All Party Parliamentary Group (APPG) on M.E.Preamble - APPG on ME, 2 July 2008From Tony Britton, Publicity Manager, The ME Association: Agenda - APPG on ME, 2 July 2008Meeting of the APPG on M.E. to be held on Wednesday 2nd July, 1.00-3.00pm, Committee Room 20, House of Commons Summary of APPG meeting on ME, 2 July 2008
Statement by Joanna Smith, read at APPG on ME, 2 July 2008Ladies and Gentlemen, Minutes - APPG on ME 2nd July 2008
Minutes of meeting of All Party Parliamentary Group on M.E. held at 1pm, Tuesday 2nd July 2008 Committee Room 20, House of Commons PRESENT Dr Des Turner MP Dr Ian Gibson MP Andrew Stunell MP Tony Wright MP The Countess of Mar
Koyes Ahmed (Office of Dr Des Turner MP)
Sir Peter Spencer, Action for M.E. Dr Charles Shepherd, ME Association Tony Britton, ME Association
Mary-Jane Willows, Association for Young People with ME Jane Colby, Young ME Sufferers Trust Christine Harrison, BRAME Joanna Smith, parent of child with ME (with Jane Colby) Ian Webster, parent of child with ME (with Mary-Jane Willows) Joy Birdsey (Kent and Sussex Alternative Group for MEE) A Gold (Patient Observer) Janet Taylor (Kirklees Independent ME Support Group) Di Newman (Peterborough ME and CFS Self-Help Group, and Cambridgeshire Neurologiical Alliance) Augustine Ryan (Person diagnosed with ME) Anna Tagliaferro (Person diagnosed with ME) Bill Kent (reMEmber) Janice Kent (reMEmber) Jo Dubiel (Person with ME) Nicky Zussman (Kent and Sussex Alternative Support Group for ME)
1. Welcome Dr Des Turner welcomed everyone to the meeting. 2. Apologies David Amess MP (group treasurer), Ann Cryer MP, Andrew Dismore MP, David Drew MP, Mike Hancock MP, Dr Brian Iddon MP, Peter Luff MP, Kerry McCarthy MP.
Heather Walker (Action for ME), Doris Jones (25% Group), Colin Barton (Sussex and Kent ME/CFS Society). 3. Minutes of the last meeting
Christine Harrison (BRAME) challenged the minute of the meeting of 22 January 2008, in particular the record of discussion with Ann Keen MP, Parliamentary Under Secretary of State for Health Services. What had crucially been omitted was the agreement reached with the meeting chairman Dr Ian Gibson before the arrival of the Minister for three key questions to be put to Ann Keen. The questions put by Sir Peter Spencer and Dr Shepherd had been included, but there was no mention of her own question.
In her complaint, Mrs Harrison wrote that the minute should show that BRAME formally asked Ann Keen for an urgent meeting between Ann Keen, Lord Darzi, BRAME and representatives of other ME organisations that would address the health inequalities and problems faced by people with ME within the NHS, and this could include Dr Chris Clough, if they wished.
Mrs Harrison wrote that she had also pointed out to Ann Keen that the Cabinet Office, in its Effective Consultation document in 2007, has as its key points on the front cover: Asking the right questions; Asking the right people; Listening to the answers. To date, in relation to ME, consultations had: Asked the wrong questions; Asked the wrong people; Listened to their flawed answers.
Mrs Harrison wrote that the relevant paragraph of the minutes should read: “Dr Gibson responded to BRAME’s question and Ann Keen’s response, by saying that he felt that such a meeting was necessary, it needed to be arranged as soon as possible, and the APPG on ME would help in any way it could”.
Subject to these amendments, the minutes of the meeting of 22 January were then agreed as an accurate record. 4 Matters Arising
There were no matters arising.
5 Presentations on Child Protection Issues by Jane Colby, executive director of The Young ME Sufferers Trust, Mary-Jane Willows, chief executive of The Association of Young People with ME, and two parents of children with ME, Joanna Smith and Ian Webster.
Two or three minutes into Jane Colby’s opening presentation, Dr Gibson said there were now sufficient members of the APPG in the room to hold the AGM. Rather than risking losing the quorum if members had to go elsewhere, he called for the AGM to be held immediately, and apologised to Jane Colby for the interruption. This was agreed. Annual General Meeting
(i) Election of Chairman
Mr Wright proposed the re-election of Dr Des Turner MP. This was seconded by Dr Gibson and agreed unanimously.
(ii) Election of Vice-Chairmen
Dr Gibson proposed the re-election of the vice-chairmen, Andrew Stunell MP and Tony Wright MP. This was seconded by the Countess of Mar and agreed unanimously.
(iii) Election of Secretary
Mr Stunell proposed the re-election of Dr Ian Gibson MP, This was seconded by Dr Turner and agreed unanimously.
(iv) Election of Treasurer Although absent, Dr Turner said he understood that David Amess MP was willing to stand again, and proposed his re-election. This was seconded by Dr Gibson and agreed unanimously.
Sir Peter Spencer (Action for ME) expressed the thanks of those present for the willingness of the officers to stand again, which enabled the work of the APPG to proceed without interruption. There was applause for the newly re-elected officers.
Dr Turner said this concluded the business of the Annual General Meeting, and added his thanks to fellow group officers.
5. Presentation on Child Protection Issues (resumed) Jane Colby
Ms Colby said sick children and innocent families were caught up in a web of professional misunderstanding about ME. It appears to these families that the presumption of innocence enshrined in British law does not apply to them.
Proceedings held in the Family Courts do not demand the same level of evidence as the criminal courts. Secrecy adds to the difficulties.
Two principles established in the children’s chapter of the Department of Health Report of 2002 are not being followed – (1) that evidence indicative of harm should be obtained before the convening of child protection conferences or initiation of care proceedings and (2) that neither the fact that a child or young person had unexplained symptoms nor the exercising of choice in the selection of treatment or education constituted evidence of abuse.
Jane Colby discussed case law in respect of Munchausen’s Syndrome by Proxy (now called Factitious Induced Illness) and the legal reasoning adopted by the UK High Court in the Family Division in which the hope had been expressed that MSBP would be ‘consigned to the history books’. However, the term FII was still in use in its place.
If a child is suspected of child abuse, the following procedure is applied:
• Within 24 hours: an initial decision is made about whether to pursue a child protection Section 47 investigation. • Within 7 days: an initial assessment must be done which involves seeing the family. • Within 30 days: a core assessment must be done.
The process moves so swiftly that parents are unprepared as to how to fight it. In practice, it appears that families in this situation are not being adequately informed of their rights or of the procedures being followed. These procedures are laid out in the Department of Children, Schools and Families’ statutory guidance in relation to child protection, ‘Working Together to Safeguard Children’.
There was another important theme to the guidance: the wishes and feelings of the child should always be sought, as should the child’s account of what has been happening to them. Jane Colby described useful techniques to assist this process.
The Young ME Sufferers Trust called for the following action:
• The Department of Children, Schools and Families should urgently alert Social Services professionals to the frequency of misunderstandings in cases of ME • A leaflet clarifying the procedures that should be adhered to by professionals in child protection investigations should be given to families under suspicion, and they should be informed of their rights.
Jane Colby then introduced Joanna Smith, a senior adviser with Brunel University Students’ Union and governor at the school attended by her two teenage daughters, both of whom have ME
Joanna Smith
Joanna Smith recalled how her older daughter Patricia became ill in 2001; it took six years for her to be diagnosed.
Mrs Smith said she was bitterly disappointed at the attitude of the consultant in the adolescent health clinic at Great Ormond Street Hospital, who not only referred to ME as “fatigue” but conducted a battery of psychological tests, spending less than 15 minutes of a three-hour visit on physical symptoms and needs. The physiotherapist there ignored her daughter’s pleas that she would rather not use the exercise bike because she was exhausted and nauseous and worried that she would fall. Her daughter suffered a severe relapse afterwards. The consultant would not support an application for disability benefit.
Educationally, things were not much better. Patricia managed to stay in top sets at her High School despite falling attendance. In year 11, she was not able to attend at all. In that year, Mrs Smith said she received one call from the LEA and a few emails from the Head of Year – none offering practical support.
“Patricia by then was suicidal from pain, insomnia and distress. And, when I say suicidal, I don’t mean she vaguely thought about it – she actually attempted to take her life.”
Mrs Smith said the LEA only admitted to serious shortcoming in provision of education for her daughter only after a year-long complaint, when she had the assistance of a specialist solicitor.
In February, her younger daughter Emily became ill. The family’s “Child Protection nightmare” began.
The school asked for a diagnosis – a legitimate request as during a prolonged absence. The vicious circle started again: a GP refusing to acknowledge ME, a long wait to see a paediatrician and pressure from the school for medical evidence.
The school would not believe that there is a tendency for clusters of ME in families, even after she sent them to scientific papers. The school started to send harsh, terse letters about de-registration and penalties.
Mrs Smith said a social worker referred by the school paid a visit, without prior warning. The school wrote to the social worker that Emily was copying her older sister, did not look unwell and was not reporting health problems to the school nurse. Mrs Smith said the social worker knew nothing about ME. A few days later, the social worker called to explain there was no case to answer, the file was closed and there was no need to continue the assessment.
“Yet the worst came recently when I was informed that, on the advice of a Child Protection-nominated nurse, the school is requesting Social Services to re-open the case. No explanation why, no information about allegations, no advice where to seek support. I was ill with shock….
“The irony of it all is that one of my responsibilities as a Governor is child protection issues. Also, please note that I am talking about the same Local Authority which already admitted inadequate support in the case of my first daughter.”
At this point, Dr Turner described the presentations as “harrowing experiences” for those involved. Many of the problems would not have arisen if all doctors were aware of the contents of the Chief Medical Officer’s Report. He said the Family Courts system was by nature secretive and arbitrary, and should be improved. Janet Taylor commented that similar cases were occurring elsewhere. If adults with ME were not being treated property what chance for children then being treated appropriately? Janice Kent asked if something could be put in place to provide redress when people’s characters were besmirched.
Tony Wright MP said that one of the problems was that many doctors still did not believe in ME and this was a societal problem. Christine Harrison said that, while the CMO Report in many respects was a good document, its recommendations on medical education and training had not been implemented. But poor communication with social services was not universal; Mrs Harrison said that when her own daughter had been unable to attend school, the family had a lovely social worker who spoke up for them.
Nicky Zussman complained that one of the Sussex health trusts still categorised ME as a mental health disorder. It was listed in a key document next to psychosis. Against this background, it was difficult to see how progress could be made. Dr Turner, as a Sussex MP, said he would be prepared to take this issue up directly with the trust, if he could be provided with a copy of the offending document.
The Countess of Mar recalled that the history of chronic illness was littered with examples of callous disbelief. Until very recently in history, for instance, both Multiple Sclerosis and Parkinson’s Disease had been dismissed as psychosomatic illnesses. The Countess said she had recently discussed the situation affecting children with ME with the Chief Inspector of Social Services, but this had not produced a satisfactory result.
Di Newman said there were similar problems in her area with social workers who had “a psychiatric reading” of ME.
Dr Turner said he would raise the issues discussed with both the Secretaries of State for Health and Children, Schools and Families to see what procedures could be put in place to improve the situation.
The discussion then returned to the main presentations. Mary-Jane Willows introduced Ian Webster, whose 14-year-old daughter Victoria has severe ME.
Ian Webster
Mr Webster said his daughter had probably had ME since she was two years old but she was only diagnosed in 2005. Currently, she is bedbound and had not been to school for three years.
In July 2007, Victoria was assigned a social worker following a referral on the grounds that adequate medical assistance was not being provided. But the social worker had little understanding of the condition. In January 2008, Veronica was seen by a paediatrician, Dr Esther Crawley, who devised a care plan, provided training for local professionals involved (although not all attended) and offered ongoing support (which was not taken up).
In April 2008, the social worker involved applied to put Veronica on the At Risk Register. Mr Webster said the criteria for placing a child on the register were whether there was risk of physical, sexual or emotional abuse or neglect. The correct procedure would have been to treat Veronica as a Child in Need. Social Services failed take account of or even grasp the concept of “boom and bust” which had been fully explained by Dr Crawley as key to his daughter’s recovery. Progress may be slow but needed to be taken at Victoria’s pace with her goals at the centre of any decisions made.
At the hearing, no evidence was offered of abuse or neglect. Both the police and Victoria’s doctor gave evidence that the case did not meet the criteria for entry on the At Risk Register and, with the chairperson’s consent, no vote was actually taken. Victoria was not placed on the register. A letter from Dr Crawley offering to support the family whatever the outcome was not even mentioned by the social worker. “My impression is that the proceedings were being driven by non-medical professionals. Bearing in mind that this was an illness case, and that the welfare of the child is paramount, this is worrying.”
The hearing was administrative in nature rather than judicial. Mr Webster said he and his wife were represented by one of his business partners; Victoria was represented by Mary-Jane Willows. The professionals made their case but the family was unable to cross-examine them. What became clear was that the professionals were not communicating either with each other or adequately with the medical professionals and were not acting as a team.
The proceedings were stressful for the family and disrupted Victoria’s the recommended therapy. All she has ever tried to do was get better. She was told by the professionals that she was not doing enough and now feels that the professionals do not trust her. The proceedings resulted in deterioration in her condition.
Mr Webster said child protection proceedings should not be used in illness cases in the absence of evidence of abuse or neglect. There were insufficient checks and balances to prevent non-medical professionals overriding the wishes and advice of medical professionals. He said there should be a presumption that the child is a Child in Need and not a Child at Risk. If ME is diagnosed or suspected, a service plan should be developed ¬– involving parents, child and all relevant professionals. The instigation of child protection proceedings resulted in breakdown of trust and the ability to work as a team.
In illness cases, the team leader must be a doctor with ME experience. Parents must have legal representation and legal aid should be available. The welfare of the child was paramount. Mary-Jane Willows
Mary-Jane Willows said the Association of Young People with ME (AYME) had supported families like the Websters for 12 years. It was hoped that, after the Chief Medical Officer’s Report in 2002, things would improve – they didn’t! The publication of paediatric guidelines by the Royal College of Paediatrics and Child Health in 2004 raised expectations of improvement. For a while, certainly among healthcare professionals, there did appear to be a mind shift but it did not last. The NICE Guidelines, published last year, have been used by AYME as a tool to fight for care of their members and have had positive outcomes. They have been positive outcomes but, like the cases heard today, they have not been universally applied.
Mary-Jane Willows asked: “What good is all the money spent on this guidance if no one reads it or takes any notice of it, or chooses to misinterpret it?”
AYME supported 37 crisis cases in the last year, most of which were families threatened with Child Care Proceedings. All were put under protracted periods of additional stress and anxiety – sometimes for many months – while professionals gathered information that would have been readily available if they had looked in the right places.
Most AYME cases were referred by education professionals while some had a background in social care. Even when parents, advised by AYME, provided all the guidance mentioned, the proceedings still went ahead. Quoting from some of those involved, the reasons included “We just want to speed up the process”, “get things moving”, “break the close bond the parents have developed with their child” (as if that is a crime), “get them back to school where they belong with their peer group”.
Mary-Jane Willows commented: “How offensive is this for parents to hear? Don’t they know that, if only it were that easy, we would have a queue a mile long. These parents will do anything to help their child, sometimes spending a fortune chasing miracle cures which we know don’t work. Who can blame them when only 25% of the country is provided with specialist CFS/ME services.”
Another vital point to consider was that all the Guidelines, including NICE, make it absolutely clear that no one should be forced into a treatment programme they don’t agree with. To quote Dr Crawley. “There is no evidence base for the best way to proceed in children who are severely affected. I advised the family based on experience and the evidence for adults. However, even if the family did not engage with this, there would be no reason for this to be a child protection issue. How much more clear could she have been but they still chose to proceed, even though Dr Crawley made it clear she would speak in court should it come to that for the family.”
Mary-Jane Willows said the position was being exacerbated by the drive and pressure in education for attendance figures to be met, to meet targets and rate highly on league tables.
In 2007, AYME chaired a working party of respected professionals from heath education and social services, all with a child protection background and developed Child Protection Guidance for professionals in education and social services. But cases continue to rise.
“When I first joined AYME, I supported a young person who was forced against her and her family’s wishes as a ward of court into hospital. It took 18 months and re-mortgaging the family home at a cost of £60,000 and a High Court battle to get her home. In court nothing was ever produced, no evidence was made available to prove why this action had been taken. The understandable result is a young woman and family who have lost faith and trust in all professionals. They now struggle on alone rather than asking for help of any kind, except from the charities that support them.”
AYME called for the following actions to be taken:
1. A directive to be issued by the RCPCH for all paediatricians to refer to the college’s guideline when treating children and young people with ME. 2. ME to be included in the training of all GPs and paediatricians. 3. All parents under suspicion of putting their child at risk should be informed of their rights and given the details of organisations which can support them. 4. An investigation into the cost of pursuing these cases.
Following the main presentations, Dr Turner asked Jane Colby and Mary-Jane Willows to produce a short summary if all the essential points which he could then send to the Chief Medical Officer and the Secretaries of State. They agreed.
In the ensuing discussion, the Countess of Mar said she also proposed calling a meeting with the chief executives of the national ME charities to hammer out areas where they shared common ground. It was vital to present a united front on key issues affecting people with ME when communicating with the Government.
Dr Turner also announced that he intended to mount an inquiry into the state of NHS services for people with ME – in much the same style as the inquiry into the state of research chaired by Dr Ian Gibson, which reported in November 2006. The services inquiry would call for written evidence and select key witnesses who would be asked provide oral evidence to the inquiry team. He said he would ask the APPG secretariat to meet with him to discuss terms of reference and the administration. In answer to questions from the Countess of Mar and Sir Peter Spencer, he said he expected the inquiry would be taking evidence on progress made since the CMO Report in January 2002.
6 Oral Reports
(a) NICE Guideline: Judicial Review hearing, 17 June
Charles Shepherd reported that, after an exploratory hearing which he attended in the High Court lasting nearly two hours, Mr Justice Cranston agreed that the application for a Judicial review on the NICE Guideline on ME/CFS should proceed to a full hearing in the autumn. Two named people had initiated the legal challenge, which relates to the processes and procedures by which NICE produced the guideline, with ME and one unnamed person. (b) House of Lords, 2 June
Dr Shepherd said that during House of Lords questions to Lord Darzi on 2 June, which he attended, the Countess of Mar asked whether his NHS review would include consideration of ME/CFS as a long-term neurological condition. In response, Lord Darzi stated that: “The long-term conditions pathway is one of the care pathways that strategic health authorities are examining as part of the NHS next-stage review. The review will increase awareness ad ensure better care for people with ME./CFS and will help to support local delivery of the National Service Framework for long-term neurological conditions.” In response to a further question from Baroness Howe, Lord Darzi said that the Government believes that ME/CFS should be classified as a neurological illness and that he would encourage the Royal College of General Practitioners to take account of the WHO classification. There were also questions from Lords Swinfen, Elystan-Morgan and Earl Howe on children with ME and care proceedings, and one on medical education from Baroness Tonge. The Countess of Mar said she had nothing to add, apart from the fact that she shared an office with Baroness Howe so it was relatively easy for them to work together on issues in which they were both interested. Christine Harrison said she had also attended the session; Lord Darzi had mentioned four times that ME was a neurological condition. (c) Royal College of General Practitioners classification
Charles Shepherd said the ME Association had been in correspondence with Dr Bill Reith at the RCGP about their decision to include CFS (using the neurological Read Code F286) as a mental health disorder in a curriculum training document. The RCGP had agreed to examine this decision but say that their administrative procedures meant that no change in position could be taken and confirmed before January 2009. The MEA is trying to fix a meeting to discuss the GP training in ME/CFS with Dr Reith.
(d) Lord Darzi and the NHS Review
Charles Shepherd said that, at the last meeting of the APPG, health minister Ann Keen agreed to try and arrange a meeting between Lord Darzi, APPG members and charity representatives. Despite several approaches to Lord Darzi, no such meeting took place. Lord Darzi published his NHS review on Monday 30 June Three specific recommendations that might relate to people with ME/CFS were: (1) All patients with long-term conditions will have personal care plans (2) Five thousand people with long-term conditions will have pilot personal care budgets (3) NICE appraisals of new drugs and treatments will be speeded up so they take a maximum of six months, rather then two years.
(e) Consultations by the Strategic Health Authorities on the NHS Review
Christine Harrison said BRAME and other local groups had been extremely active in promoting awareness of ME issues in their local SHA consultation on the NHS Review. In East Anglia, the consultation will close on 14 August. She spoke about the importance of the consultation and urged other groups to make similar representations to their SHAs. BRAME had draft template letters that others could use. Joy Birdsey reminded members about using the local LINks network to promote discussion and awareness; organisations in the Medway area of Kent were using this system successfully..
(f) NHS Plus occupational health leaflets – update
Charles Shepherd said that, following a joint initiative involving local and national charities/organisations, Dr Ira Madan – clinical director of NHS Plus – had attended the APPG last year to discuss our concerns about their occupational health guidance for ME/CFS. Revised versions of all three leaflets had now been published, and were available at the NHS Plus website. Although not perfect, the revisions had incorporated a large number of changes requested by those involved in the discussions ands represented a significant improvement in content.
(g) DWP Medical Guidance
Charles Shepherd said it was now almost a year since the DWP had published their revised medical guidance for decision-makers considering applications from people with ME/CFS for Disability Living Allowance and Carers Allowance. Since then, it had been impossible to objectively assess the outcomes for claimants because up-to-date information on refusals, appeals taking place and successful appeals had not been published. The ME Association continued to receive anecdotal reports of people being refused DLA – both existing and new applications but there had been a reduction in the overall number of calls and emails relating to DLA problems in 2008. One example of a letter sent to the MEA was read out: “Until May 2008, I was on high rate mobility and medium-rate care. Now I have been told I will get nothing” – from someone losing both components of his existing DLA Awards. This person had also reported that, after being placed on a graded exercise programme at a specialist NHS service, this had severely increased his bone, muscle and joint pain because of too much activity. “As a consequence of the way I was treated, I refused to attend this service any more”. Other charity representatives reported similar experiences with DLA problems and Sir Peter Spencer referred to the Action for ME patient survey which revealed that many people were still having to go to appeal, where they were often successful.
6. Any Other Business
(a) Di Newman objected that items she had asked to be considered in detail – (i) a template for a UK-wide module for ME services, and (ii) consideration of the implications of the Mental Health Act and Mental Capacity Bill for people with ME – had again found themselves at the bottom of the agenda. Dr Turner apologised, saying the meeting had run out of time. He offered to place them on the agenda for the next meeting.
7. Date of the Next Meeting
Dr Turner agreed to call the next meeting early in October, the exact date to be agreed with the secretariat
The meeting closed at 3pm. Preamble to APPG 22/1/2008 - a summaryApologies for absence
The Secretary of State for Health was said to be unable to attend but Ann Keen MP, Parliamentary Under Secretary of State for Health Services, agreed to speak to the Group. Mrs Keen is well aware of M.E. issues, both as a former nurse and constituency MP for members of Network MESH (West London).
Peter Luff, Patron of Worcestershire M.E. Group and MP for Mid Worcestershire, said he might not be able to attend because of other commitments.
Concerns in Norfolk
The following points were among concerns voiced in correspondence with RiME Norfolk:
- the fear that politicians might 'take their eye off the ball' re biomedical research in the mistaken belief that ME patients can be treated at 'CFS/ME clinics.
- the mistaken idea that ME activists should support funding for national CFS/ME clinics in the hope that psychiatrists will one day be converted to a biomedical approach.
- Norfolk & Suffolk CFS/ME Service is no longer clinician-led. The new service model includes enhanced therapy input and CBT. Patients feel that GP views CFS/ME as a biopsychosocial problem rather than a biomedical one
- Norfolk's CFS/ME clinic has been replaced by a CFS Service offering such solutions as CBT - it is feared that much 'treatment' and 'consultation' is carried out over the phone.
- It is claimed that supposed 'experts' have a poor understanding of what living with CFS/ME on a daily basis is like.
- One clinic should close now - the doctor has retired, only occupational therapists give advice - "we get psychojumbo now, nothing physical."
- Great Yarmouth/Waveney PCT has set up a Chronic Fatigue Syndrome Service. It is not about ME and the PCT is advising GPs to prescribe golf, tennis, badminton and dance.
Patient surveys funded
Barbara Robinson, Suffolk Youth & Parent Group, has been awarded funding to support a more thorough patient survey which, it is hoped, will establish where statute and law is currently being disregarded. Barbara was pleased to hear that John Sayer, Chairman, "M.E. Support-Norfolk" is engaged in an identical exercise. Barbara hoped that legislation under the 2004 Children's Act, coming into force in April 2008, could be used as "a lever to establish a proper provision, service model, pathway without any excuse over 'funding' priorities or any other let out which may be utilised."
Definition/Classification
(1) Jacqui Butterworth asked if a question could be asked at the meeting about the chances of changing the World Health Organisation's definition of M.E.
(2) Jill Pigott, Worcestershire M.E. Group, hoped for a reply from the Prime Minister on a petition to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder, not a pschosocial syndrome. She said the health service was still being directed to treat M.E. sufferers with GET and CBT despite mounting evidence that such treatments cause more harm than good.
Closures and cut backs
Jill Pigott passed on a request from Dr. Charles Shepherd, M.E.Association, that the MEA be made aware of the situation re existing services provided by 13 CNCCs and their LMDTs so that closures and cut backs not already discussed by the APPG could be raised as specific issues with Ann Keen.
Cluttered agenda
Di Newman, Co-ordinator, Peterborough M.E. & C.F.S. Self-Help Group, expressed her concern that there are too many items on the agenda and wanted this matter raised under Any Other Business. She feels that insufficient time, often five minutes or less, is given to each item and that there is a tendency to "tick" the item as having been dealt with and discard it instead of discussing it properly. From: The ME Association
Tuesday 22 January 2008 4.00pm-5.30pm Committee Room 17, House of Commons.
AGENDA
1. Welcome by the Chair, Dr Des Turner MP
2. Minutes of the last meeting • letter from Paul Davis, RiME • letter from Angela Kennedy/Ian McLachlan
3. Main speaker: Ann Keen MP, Parliamentary Under Secretary of State for Health Services
4. Matters arising • NHS services • NICE guideline • Adjournment debate and revised Early Day Motion • DWP guideline • Occupational Health Guideline • NHS Collaborative Conference
6. Any Other Business
7. Date of Next Meeting
Issued on behalf of Des Turner MP, Constituency office: 179 Preston Road , Brighton BN1 6AG Tel: 01273-330610.
E-mail: There is also an agenda at Forwarded by Barbara Robinson, Suffolk Youth & Parent Group From the ME Association
This is a short personal summary/sketch of key points to emerge from the All Party Parliamentary Group (APPG) meeting held on Tuesday 22 January 2008. A more detailed account - in the form of the official minutes being prepared by The ME Association - will follow later.
VENUE
Committee Room 17, House of Commons
ATTENDANCE
Parliamentary:
Ian Gibson MP Kerry McCarthy MP Andrew Stunell MP Tony Wright MP Countess of Mar
There were numerous apologies from MPs as other important meetings were taking place, including a debate in the House of Commons chamber on the Energy Bill.
Secretariat:
AfME: Sir Peter Spencer and Heather Walker MEA: Tony Britton and Dr Charles Shepherd
National ME charity and ME organisation representatives:
25% Group: Doris Jones AYME: Mary Jane Willows BRAME: Christine Harrison MERUK: Sue Waddle RIME: Paul Davis Tymes Trust: Jane Colby
There were also around 20 others present: parliamentary assistants; local group representatives; people with ME and carers. A full list of those attending will appear in the minutes.
In the absence of Des Turner, who was taking part in the Energy Bill debate, the meeting was chaired by Ian Gibson with his usual good humour and tolerance.
MINUTES OF PREVIOUS MEETING
The meeting opened with a prolonged and at times quite heated discussion relating to disagreements with the previous APPG minutes that had been raised in letters from Paul Davis and Angela Kennedy - both of whom spoke.
MATTERS ARISING AND ROUTINE BUSINESS
Having been notified that Ann Keen, Parliamentary Under Secretary at the Department of Health, would be late the secretariat provided a brief update on current 'hot topics'. A background briefing paper on these 'hot topics', prepared by the MEA, was circulated to those present.
Adjournment debate: CS reported that John Bercow MP had not been successful in achieving a slot through the December ballot. John Bercow is going to keep trying as the opportunity arises.
DWP medical guidance on ME/CFS: CS reported that without any DWP statistics to go by following the introduction of this new guidance in July 2007 all we have are continuing anecdotal reports, and that more information on benefit problems is really required before asking a DWP minister to return to the APPG. As an alternative, it was decided to consider the possibility of arranging a meeting with the DWP to discuss our continuing concerns over benefit problems.
NHS Plus leaflets on Occupational Health: CS reported that Dr Ira Madan had written back to the MEA on January 11 to say that she was considering the points made in the joint charity response submitted by the MEA and that revised versions of the three leaflets were now being prepared. PS was hopeful that the amendments would meet the concerns and objections that have been expressed.
NHS Collaborative Conference: PS and MJW gave a positive report on this conference about which concerns had been expressed at the last APPG meeting.
PREPARATION FOR PRESENTATION BY THE MINISTER
With no sign of the Minister, Ian Gibson felt that we should move on and agree a small number of key points that should be raised in the limited amount of time we were likely to have with the Minister and what we should ask for at the end in order to keep the momentum going - otherwise we were going to miss a marvellous opportunity to contribute to government policy making..
It was decided to concentrate on the issue of NHS services - in particular problems with existing services (ie financial cutbacks and closures following the end of the =A38.5 million ring fenced funding from the DoH) and new services that are being introduced or proposed following the NICE guideline (ie early indications that PCTs may be opting for services that are not physician led, offer no diagnostic service, and concentrate on CBT and GET). And as Lord Darzi would be completing his work on the long term neurological conditions chapter of his NHS review fairly shortly, we should be seeking an urgent meeting with him to discuss ME services.
Ian Gibson suggested that it may be useful to prepare another Early Day Motion (EDM) - this time concentrating on services. Ian Gibson also suggested that the time may have come for the government to appoint an 'ME Tsar' who can deal with all the various issues relating to ME - in the same way that high profile diseases such as cancer and heart disease now have their own government health tsars.
MINISTERIAL PRESENTATION FROM ANN KEEN MP
[NB: Ann Keen entered parliament in May 1997 as member for Brentford and Isleworth]
Ann Keen and her entourage arrived shortly after 5pm.
Accompanying her was Dr Chris Clough - a consultant neurologist from King's College Hospital, London - who is also a member of the External Reference Group for the National Service Framework in long term neurological conditions.
Ann Keen started off by explaining that she had spent 25 years in nursing - much of this in the community working with people who have long term disabling conditions.
She clearly understood and sympathised with many of the well known problems facing people with ME:
a.. Unsympathetic doctors b.. Lack of medical education and training on ME c.. The need for early diagnosis d.. Good quality management that covers all aspects of the illness e.. Research, or lack of it, including the need for better epidemiological data so that health providers know the full extent and severity of the problem
I doubt if anyone would disagree with the aspirations that Ann Keen expressed when it comes to improving the situation for people with ME. Whether the Minister can actually deliver any of these changes remains to be seen. And while accepting that local decisions about the funding of service provision could create problems, there was no indication that the DoH was going to make any further special case for ME or be more proactive in telling PCTs what to do.
On the question of classification, Ann Keen was quite happy to use the term 'neurological' as the best way of describing ME - which she did on several occasions . And there was no objection to the term neurological from the neurologist who was present. Could this actually signal the end of the road for the dreadful term 'biopsychosocial illness, so favoured by the psychiatrists and NICE?
Key points relating to existing services and new services were put by MJW (as PS had to leave and catch a train to Edinburgh), CS and Christine Harrison (BRAME).
Ann Keen said she was happy to stay on and answer a few questions - which she did. Question time included some comments on the proposed new service in Kirklees, West Yorkshire - where the impetus has come from a rise in the number of neurological referrals.
The meeting concluded by thanking Ann Keen for coming and offering to try and set up a meeting with Lord Darzi, Parliamentary Under Secretary of State at the DoH, to discuss the whole issue of NHS service provision for people with ME. More information on this proposed meeting. and the EDM, will appear on the MEA website as it becomes available.
ANY OTHER BUSINESS
Jane Colby presented a paper, through the Chair Ian Gibson, that contains a critical evaluation of some of the research input that comes from psychiatry. A copy of the paper was given to the Minister.
CLOSE OF MEETING
The meeting closed shortly before 6pm. The topic and date of the next meeting has still to be arranged.
MEA website:
Ann Keen website:
Personal comment: As has been noted many times before, MPs have a vast range of options when it comes to how they spend their time at Westminster. Although membership of the ME APPG is quite high, very few MPs and members of the House of Lords actually manage to come along to the meetings. Those that do tend to be regular supporters who are prepared to tolerate what can be prolonged and unpleasant interventions that involve only a very small section of the ME community who attend these meetings. But there are other members of the APPG who are not prepared to attend if this sort of activity is going to take up a significant part of what are normally fairly short and time limited meetings.
Dr Charles Shepherd Hon Medical Adviser, ME Association 28 January 2008
02/02/08 RiME Summary of APPG Meeting 22/1/08
Post APPG 22/1/08 concerns - a summaryDWP & ATOS
Annette Barclay asked Barbara Robinson about the work she had been doing with DWP and ATOS.
Barbara referred to a previous posting about her contact with ATOS - she had offered to liaise with them and had suggested MEA involvement, possibly bypassing DWP to some extent. She had suggested looking at ways in which decision making could be improved and money saved by a more efficient process. She believed that no-one in their right mind could turn down such a gesture unless there was a hidden agenda.
Barbara feels that no-one in DWP or ATOS knows the sum of all the parts but "unfortunately for them some of us do."
Disability Living Allowance (DLA)
As a teacher, Barbara Robinson said, she supports lots of kids who were on DLA for autism, behaviour, etc., who are losing out on renewal. First time claims are poorly processed, and much evidence is not taken into account by decision makers. Visiting medical doctors are unable to determine the level of disability and new software systems are too simplistic.
Worcestershire PCTs amalgamated
Jill Pigott, Worcestershire ME Support Group, was not able to make all her points about the West Midlands and Worcestershire/Herefordshire situation at the meeting, but she did mention that, since the three Worcestershire PCTs amalgamated, less time is available to allocate to ME/CFS.
The person in the newly amalgamated Worcestershire PCT with the title "Commissioning - Long Term Conditions) has told Jill that she does not have the time to allocate to ME/CFS. Jill has informed the relevant MPs.
New NICE guidelines
One delegate said he was happy that CFS/ME are no longer seen as purely psychological illnesses but now that CFS/ME are not necessarily going to be treated by mental health care set-ups, will PCTs use this as an excuse to cease NHS provision for CFS/ME altogether?
Countess of Mar
The Countess left the meeting prematurely, apparently unhappy about comments from certain individuals. One delegate suggested that there was no evidence of abusive language being used and that MPs must be used to much worse comments, e.g. one Party Leader calling another '"Mr. Bean" in the House of Commons. Another delegate, referring to the Countess's departure, said that Ian Gibson, the Chair, allowed a fair amount of comment before saying that any further comments would waste the meeting's time. That delegate felt that it was a "pretty productive meeting...not a riot!"
Minutes of APPG meetings
There have been several exchanges expressing concern about the accuracy of minutes and the need for objectivity. The minutes of the July meeting contained the suggestion that Paul Davis's views did not reflect those of the majority. There has been a call for this item to be clarified or removed. One delegate said that Mr Davis had fought for APPGs to be opened up to PWME, which may have led to ill feeling from MPs who did not agree. Some attendees are said to have put Mr Davis into a 'loony fringe' - the Chair was unable to prevent loud voices drowning out Mr Davis's attempts to read out letters re some new clinics. One plea for tolerance came from a delegate who said that politics comes down to individuals and opinions and ME politics is no different - "we are involved in a war against bias and untruths and sometimes the devil is in the detail."Delay in publication of minutes
Suzy Chapman was concerned that Health Ministers and members of the House of Lords were referring to statements made during the APPG meeting held over four months earlier, when no minutes had been produced during that time for interested parties to review.
The meeting had been attended by Ann Keen, the new Parliamentary Under-Secretary at the Department of Health, who had been given the job of overseeing the Department's work on M.E.
Enquiries to officials of the APPG apparently resulted in a "wall of silence". Furthermore it was reported that a secretary in Ann Keen's office said that no minutes had been taken when clearly this was not the case. It was not established until early in June that draft minutes had been approved by the chairman.
Alleged inaccuracy of minutes of previous meetings
Complaints on this topic continued to arise. One such complaint was that a statement from Paul Davis of RiME had been omitted from the minutes of the July meeting. It was claimed that the CBT clinic in Maidstone offered nothing for those with neurological conditions like ME. The feeling that the money would be better spent on biomedical research was re-emphasised. There was no mention of the "much maligned" Kent clinics and members of Kent ME Network were reported to be extremely upset that their views had not been recorded in the official minutes.
The future prospects for APPGs
The delay in producing minutes and the fact that no date was announced for the next meeting, (later scheduled for 2 July 2008), gave rise to some expressions of doubt about the future of APPGS. It was suggested that:
Minutes - APPG on ME, 22 January 2008On MEA website Aftermath of APPG 22/1/08 - a summaryConcerns continued to be raised about the importance of minutes being accurate. Jill Cooper of Rugby complained that paperwork does not reflect reality and that minute taking has now become selective note taking. What is recorded becomes the "truth". She pointed out that the NHS Ombudsman stated, in a report, that it is not the Ombudsman's remit to ascertain the accuracy of medical notes, and that as a result, whatever is written becomes "fact". Rosie Cox, Cardiff, suggested that meetings be "taped" , a point supported by Ian Lee who said "real" minutes should include everything.
John Sayer also expressed concern over this issue, suggesting an apparently deliberate policy to put a "spin" on APPG minutes.
Agenda for APPG on ME meeting and AGM: Thursday, July 12 2007May be reposted: M.E. Association summary of APPG on M.E. meetingHello all,
A very well attended meeting, plus a few MPs.
A very good presentation by Dr Terry Mitchell, regional clinical champion for East of England (Norfolk & Suffolk ME/CFS Service, and Greater Peterborough/Cambridgeshire Adult Services for ME/CFS) who said that he has always tried to look at patients holistically.
He explained that of the £8.5 m promised by the DoH, only £6.5 m was allocated for clinical development. In 2006-7 the DoH reduced this by 15% to £5.236 m as part of the need to reduce costs across the NHS. Also the fact that funding was ring fenced to the end of March 2006 and was subsequently transferred to an anonymous `bundle'.
Dr Mitchell gave details of the situation in his area, and his experience. He has been involved with helping pwme since 1984 when he had a clinic at James Paget Hospital , Great Yarmouth - at this time this was in his spare time plus the use of Haematology Secretary.
Dr Mitchell, who was a consultant haematologist before he developed an interest in ME, believes ME is often the result of an inappropriate response by the immune system. Dr Mitchell has endorsed the Canadian Consensus document on ME.
Discussion followed this presentation on services throughout the country, and I managed to say a few words near the end of the discussion - So many people wanted to add their experiences, and thanks to Charles Shepherd who had already received the WMMEG (West Midlands ME Groups) statement, I had a chance to refer to our CNCC and LMDTs. I had distributed the statement and an introductory sheet prior to the commencement of the meeting, and said most of the info in the introductory sheet, including the conference in the Autumn when NHS therapists will have a full programme on the psychosocial approach. (statement attached)
The meeting continued with John Bercow, MP for Buckingham, suggesting an adjournment debate on ME/CFS in the Autumn. He felt that if a few members of parliament put this idea forward it would be more likely that it would be included. He said it was time more MPs were aware of the situation.
www.theyworkforyou.com/glossary/
An adjournment debate is a short half hour debate that is introduced by a backbencher at the end of each day's business in the House of Commons. Adjournment debates are also held in the side chamber of Westminster Hall. This technical procedure of debating a motion that the House should adjourn gives backbench members the opportunity to discuss issues of concern to them, and to have a minister respond to the points they raise. The speaker holds a weekly ballot in order to decide which backbench members will get to choose the subject for each daily debate. Backbenchers normally use this as an opportunity to debate issues related to their constituency. An all-day adjournment debate is normally held on the final day before each parliamentary recess begins. On these occasions MPs do not have to give advance notice of the subjects which they intend to raise. The leader of the House replies at the end of the debate to all of the issues raised.
Mental Health Act and Mental Capacity Bill - the implications for ME (via Di Newman, Peterborough ME and CFS Self- Help Group) was also on the agenda.
By the time many people had been involved in the NHS Services discussions, there was very little time for Di to have her say - the few comments that I made note of were involved the fact that sectioning is going to increase, and the fact that `who can section' has been widened.
In aob Doris Jones, (25% Group) mentioned the domination of the psychology approach in the forthcoming Collaborative Conference, and also the advert for a research worker at the Institute of Psychiatry, at the Maudsley NHS Trust. Unfortunately by this time the meeting was already running late, and the MPs wanted to leave so there wasn't any opportunity to discuss this further. She read out the `background' paragraph
www.iop.kcl.ac.uk/vacancies/downloads/0740.pdf
'Emotional Processing in Psychosomatic Disorders'. This project is funded through the newly established Biomedical Research Centre at the Institute of Psychiatry . "Background: Anorexia nervosa (AN) and chronic fatigue syndrome (CFS) are classical psychosomatic disorders where response to social threat is expressed somatically (e.g. Hatcher & House, 2003; Kato et al., 2006; Schmidt et al., 1997). Other similarities between these disorders include strong female preponderance and overlapping personality characteristics, such as being introverted and anxious/avoidant."
Also, near the end of the meeting, Charles Shepherd said that we have all tried very hard to influence the NICE and DWP Guidelines, and the problems with them will become evident quickly, definitely by the time of the meeting after next. He added that they need to hear from pwme as to how they are being affected - so keep in touch with the group so your views can be forwarded.
The next APPG meeting will be in November, so no doubt the 'meeting after next' will be in Spring 2008. Jacqui Smith, MP for Redditch, announced the £8.5 m in the Spring of 2003 - time for pwme is just going by.
Jacqui Smith came to one of our meetings last November to meet pwme in Redditch - she said that she announced the funding, because it just happened to be the position she was in at that time!
That is most of the notes I made at the APPG meeting. We received handouts from the Norfolk & Suffolk ME/CFS and Greater Peterborough/Cambridgeshire Adult Services for ME/CFS, BRAME (based in Great Yarmouth, Norfolk), and Criona Wilson (Sophia's Mum).
Dr Charles Shepherd ME Association
07/12/07 Minutes, APPG on ME, 12 July 2007Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 1.30pm, Thursday 12th July 2007 Committee Room 17, House of Commons
PRESENT
Dr Des Turner MP (Chair) Dr Ian Gibson MP (Secretary) David Amess MP (Treasurer) Celia Barlow MP John Bercow MP
Koyes Ahmed (Office of Dr Des Turner MP)
Sir Peter Spencer, Action for M.E. Heather Walker, Action for M.E. Neil Riley, The ME Association Dr Charles Shepherd, The ME Association Tony Britton, The ME Association
Doris Jones, 25% Group Tanya Harrison, BRAME Christine Harrison, BRAME Barbara Robinson, Suffolk Youth & Parent Support Group, member of EAME Rosemary Page, Cambridge M.E. Support Group Richard Crossich, North London ME Network Hazel Griffiths, North London ME Network Di Newman, Peterborough ME and CFS Support Group Paul Davis, RIME Joy Birdsey, RIME Bill Kent, ReMEmber Janice Kent, ReMEmber Colin Barton, Sussex and Kent ME/CFS Society Jill Piggott, Worcester ME Support Group Dr Terry Mitchell, Great Yarmouth and Waveney PCT Barbara Boyden, Peterborough Team Nurse Dr Anne Gerken, Norfolk & Suffolk M.E. service Doug Fraser (?), Hammersmith Group Brook Hoadley, parent of teenager with M.E. Annette Barclay, person with M.E. Christine Russo, person with M.E. Augustine Ryan, person with M.E. Criona Wilson, mother of the late Sophia Mirza
1. Welcome Dr Des Turner thanked everyone for attending and welcomed them to the meeting, particularly the main speaker - Dr Terry Mitchell, the regional NHS clinical champion for M.E./CFS in East Anglia.
2. Apologies The Secretary of State for Health, Rt Hon Alan Johnson MP, the Parliamentary Under-Secretary of State for Health, Ann Keen MP, Dr Roger Berry MP, Tim Boswell MP, Angela Browning MP, Jim Cousins MP, Andrew Dismore MP, David Drew MP, Mike Hancock MP, Kelvin Hopkins MP, Dr Brian Iddon MP, Eric Illsley MP, Fraser Kemp MP, Eleanor Laing MP, Peter Luff MP, Bill Olner MP, Sion Simon MP, Clive Page MP, Dr Richard Taylor MP, Mark Todd MP, Rudi Vis MP
Jane Colby, The Young ME Sufferers Trust
3. Minutes of the last meeting: Subject to the following amendments, the Minutes of the Meeting held on 17 May 2007 were agreed as a correct record:
i. Page 5: Any Other Business (AOB): NHS-funded services for ME/CFS. Christine Harrison said that rather than just raising the issue of funding for NHS services, she and Barbara Robinson had proposed that the APPG should table a question about the closure of services and call for an urgent meeting with the Minister of Health to address concerns raised in a paper which was circulated.
Dr Turner explained that the Minister had been invited to attend to address these points but as he had just been appointed, it had not proven possible for him to attend on this occasion.
ii. Omitted under AOB: Doris Jones said she had raised concerns about M.E. services in the Plymouth area which had not been minuted. She could supply details on request.
iii. Page 6: AOB: Group for Scientific Research into ME Tony Britton (APPG Secretariat) said he had inaccurately recorded the names of members attending the last meeting of the GSRME. The list should have read: Dr Ian Gibson MP, The Countess of Mar, Dr Richard Taylor MP and Michael Meacher MP.
The Chair invited anyone wishing further information on any of these points to contact the people who had raised them.
4. Matters arising There were no other matters arising which could not be dealt with later in the meeting.
5. Annual General Meeting Dr Turner said all the existing officers had agreed to stand for re-election. He reminded visitors that only parliamentarians could vote in the election.
John Bercow MP proposed the re-election of all existing officers on block. This was seconded by Celia Barlow MP, and agreed unanimously. The following officers were duly re-elected:
Chair: Des Turner Vice Chairs: Andrew Stunell and Tony Wright Secretary: Ian Gibson Treasurer: David Amess
6. NHS services Main speaker: Dr Terry Mitchell, regional clinical champion for M.E./CFS in East Anglia
i. Dr Mitchell said he had been asked to speak about the financial problems of specialist NHS services for M.E. and the benefits of taking a biomedical approach to treatment.
He began his presentation by describing how his clinical involvement with M.E./CFS dated back to 1984/5, when he started work as a haematologist at James Paget Hospital. In the beginning he did not have a particular interest in M.E. but he saw patients whose symptoms he could not explain by any other diagnosis and soon a waiting list grew. His workload steadily increased over the years until the ME/CFS service which had developed, which was taking in patients from much of Norfolk and Suffolk, was transferred to Waveney PCT.
Ring fenced funding In 2003, the Department of Health produced £8.5 million in ring fenced funding (over two years) for the development of clinical services in England. Dr Mitchell was involved in three local bids for funding: (1) extra funding for the Norfolk and Suffolk service multi disciplinary team; (2) new funding for a paediatric service in Cambridgeshire led by Dr David Vickers plus an adult service for Cambridgeshire and Greater Peterborough - ie. two local multidisciplinary teams (LMDTs); (3) the establishment of Waveney as a clinical network co-ordinating centre (CNCC).
All three bids were successful and received funding. The total amount for 2005-2006 for all three components came to £456,000.
The money was put towards additional therapists, extra medical time being made available, reduction in waiting lists in Norfolk and Suffolk and a new service for Cambridgeshire and Greater Peterborough.
The total population covered (Norfolk + Suffolk + Peterborough + Cambridgeshire) was 2.1 million. In this total were an estimated 8,000 potential M.E./CFS patients.
During 2005-2006 the total workload for the equivalent of almost 7 full time staff was 8717 patient contacts, including 581 new patients. This made Norfolk, Suffolk and Cambridge combined the busiest service in England.
Dr Mitchell described the way in which the service was built up to provide a comprehensive package of care including both diagnosis and on-going management via a therapy team. This is based on a biomedical model with a flexible holistic approach to activity management and appropriate symptomatic management. The service also acknowledges that, as in any chronic illnesses, problems such as depression can also occur.
The service worked closely with local patient groups who formed the East Anglian M.E. Patient Partnership Network.
Overall, the service's own audit procedures and feedback from patients was extremely positive.
At a national level, of the original £8.5 million, only £6.5 million was allocated for clinical development.
Reduced funding In the financial year 2006-2007 the Department of Health reduced this by 15% to £5.236 million as part of the need to reduce costs across the NHS.
The initial £8.5 million was ring-fenced to the end of March 2006 but was subsequently transferred to an unlabelled financial 'bundle.'
The issue of significant reduction in funding for clinical services and the CNCC was not raised until October/November 2006 in Norfolk and Suffolk, and January/February 2007 for the Greater Peterborough/ Cambridgeshire service.
The situation for 2007-2008 appears to be a continuing and there is a significant deficit of around £62,400. The impact is such that paediatric services will probably continue much as before in Cambridgeshire; the Greater Peterborough adult service will have a likely budget shortfall of 23%; and Waveney is likely to have a reduction in budget of at least 21%.
The loss of funds has resulted in organisational chaos, especially in adult services. Some referrals were not being placed on waiting lists. Waiting lists had been down to 8-10 weeks but most patients were now waiting over 13 weeks and in one extreme case, 38 weeks. Patients and carers were concerned that the good service they had had, which was highly rated, was under threat. A service level agreement was needed to raise funds in Peterborough.
ii. Dr Turner thanked Dr Mitchell for his presentation, which highlighted that money not ring-fenced by Westminster would be spent on something else.
iii. Christine and Tanya Harrison thanked and applauded Dr Mitchell for the outstanding care he had given people with M.E., not least Tanya, who is severely affected, over 16 years, including regular out-of-hours home visits.
iv. Di Newman added that the Peterborough service could provide a template for developing services elsewhere.
v. Paul Davis read out a letter from of the Norfolk Group which listed dissatisfaction with CBT-led NHS specialist services amongst local support groups in Norfolk, Manchester and Winchester and Eastleigh, adding that the money would be better spent on biomedical research.
vi. A number of people responded saying that services had benefited many and provided a foundation on which to build. Christine Harrison and Barbara Robinson said that the views expressed by certain individuals did not reflect the consensus. They described the services provided by Dr Mitchell and his team as 'An oasis in a desert.'
vii. Dr Mitchell added that patient feedback through the audit process had been positive.
viii. Dr Ann Gerken pointed out that there was no simple audit system in place across the services, pulling together what has been learned.
ix. Paul Davis asked Dr Mitchell what criteria were required for people to access his service. Dr Mitchell said: referral from a GP.
x. The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority.
xi. Sir Peter Spencer said that the failure to expand specialist M.E. services across the whole of England and the failure to prevent closures were inexcusable. The APPG had had a clear warning of the crisis in the paper tabled by Action for M.E. in 2006. Political intervention was urgently needed to protect these services.
xii. Sir Peter then read out a brief statement at the request of AYME which said AYME was very positive about the CFS/M.E. services and had worked with them in an open and positive way. Although no service could meet every service user's needs, on the whole AYME members reported satisfaction and gratitude for the help and support they received. AYME wanted to see more services, not less and all fully funded.
xiii. Annette Barclay asked what impact the new NICE guideline would have on NHS clinical services and to what extent their guidance would be mandatory on clinicians. Colin Barton also voiced concern. Tanya Harrison replied saying PCTs are not legally bound to adhere to NICE as the guidelines are not mandatory and that legally PCTs are bound to act in the best interests of patients. However, she felt that PCTs would use the guidelines.
xiv. Jill Piggott summarised a statement prepared for the APPG by the West Midlands ME Groups Consortium (Herefordshire ME/CFS/FMS Group; Shropshire and Wrekin ME Support Group; Solihull and South Birmingham ME Support Group; Warwickshire Network for ME; Worcestershire ME Support Group) regarding the closure of the West Midlands CNCC due to lack of funding. The statement went on to criticise the way in which they believe the CNCC Collaborative for M.E./CFS is placing too much emphasis on psychological aspects. It also criticised the proposed agenda for the NHS Collaborative Conference due to take place in October.
xv. Janice Kent was concerned that the Sussex service was overworked and under-funded and about the length of waiting lists.
xvi. Joy Birdsey called for consistency across NHS services and was supported by Bill Kent.
xvii. Dr Turner suggested that the new Secretary of State for Health, the Rt Hon Alan Johnson MP, should be invited to address the APPG about loss of funding for NHS services, lack of biomedical research and concerns about recent guidelines. M.E. needed to be listed as a priority condition so that PCTs would take it seriously.
7. Adjournment debate i. John Bercow referred to his recent meeting with the MEA at which all the current concerns relating to DWP medical guidance, NHS Plus occupational health guidance, NICE guidelines, NHS services and MRC research strategy were discussed in some detail.
ii. John Bercow felt that the best way to bring these matters to wider attention would be through a 90 minute adjournment debate once parliament returns after the summer recess. To obtain a debate would involve entering a parliamentary ballot but if a number of MPs joined in there was a reasonable chance of success.
iii. This was welcomed by the Chair.
iv. Sir Peter Spencer strongly supported the idea of an adjournment debate. While he was very grateful to those MPs who had attended the APPG, greater numbers of MPs were needed to achieve the political interest necessary for change. 250,000 people with M.E. were suffering injustice, ignorance and prejudice - probably a million citizens, when their families were included; a significant proportion of the electorate. M.E. cost the nation £6.6 billion every year. The adjournment debate was an opportunity to raise M.E. on the political agenda and provide focus.
v. Charles Shepherd said that the MEA would prepare a media and political briefing paper, based on the paper prepared for John Bercow, which could be used for media and political campaigning.
v. Di Newman asked that the Mental Health Bill should also be raised as an issue for concern.
vi. Christine Harrison asked that the impact on the severely affected of the removal of NHS services should also be highlighted.
Dr Turner suggested that new Ministers responsible for Health should be contacted, such as Ben Bradshaw, Minister of State for Health Services and Ann Keen, Parliamentary Under Secretary for Health Services.
8. Mental Health Act and Mental Capacity Bill i. The Mental Health Bill to amend the 1983 Mental Health Act completed its parliamentary stages on 4 July.
ii. Di Newman raised concerns about the amended legislation and the possible impact for people with M.E.
iii. Although the Government had made important concessions to protect patients and their families, the Bill would increase the number of people who can section patients. Ms Newman was concerned that people who refused treatment would be sectioned. There was a risk of over-use of community treatment orders and there were concerns about the powers given to clinicians.
iv. Criona Wilson described how her late daughter Sophia was taken to a mental hospital against her will for two weeks in July 2003.
9. Any other business i. Dr Charles Shepherd reported that the tenth and final version of the Department for Work and Pensions guideline on M.E./CFS had been sent to charity representatives involved in the negotiations and would be published officially on 20 July 2007.
Christine Harrison said that BRAME was very disappointed to find that their suggestion for the inclusion of a disability rating scale had not been accepted in the final version.
Dr Turner said that he would invite the new Secretary of State for Work and Pensions, the Rt Hon Peter Hain, to address the APPG at its February meeting.
ii. The National Institute for Health and Clinical Excellence guideline would be published 22 August 2007.
iii. As the APPG was now involved in trying to secure an adjournment debate, Dr Shepherd suggested deferring work on a revised Early Day Motion. It was decided that an EDM would remain as a future possibility.
iv. Dr Ira Madan had agreed to meet two charity representatives, Sir Peter Spencer from Action for M.E. and Neil Riley of the MEA on Monday 16 July. A meeting which included a larger number of patient and charity representatives had been requested but Dr Madan had declined.
v. Doris Jones expressed concerns about the NHS Collaborative Conference that will take place in October, because of psychosocial management presentations included in the programme and about the wording of an advert for a research worker at the Institute of Psychiatry, Maudsley NHS Trust, which said: "Anorexia nervosa and chronic fatigue syndrome are classical psychosomatic disorders."
10. Date of next meeting The Chair suggested meeting on 1, 8 or 15 November 2007, depending on the availability of the Secretary of State for Health.
08/07/07 RiME Summary of APPG Meeting, July 2007 from Stephen Ralph, ME ActionUKPERMISSION TO REPOST
Campaigning for Research into ME (RiME)
Summary of APPG Meeting July 2007
The main speaker was Dr Terry Mitchell. Dr Mitchell, who used to work at the James Paget Hospital Norfolk with 'CFS/ME' patients, talked about his experience in that field. He used terms like 'fatigue' and 'post-viral fatigue'.
He said both he and his patients were originally naive and that patients were treated 'holistically'.
He also mentioned 'anxiety', 'boom and bust', and that some benefited from CBT. He said that the original £8.5 2003 - to be spent over 2 years - had been reduced 2006-7 to 5.24m, and that has affected services in the Anglia region.
When I asked about admittance criteria, his reply suggested that there was none. He said patients were referred via GPs; he said they had looked the Canadian and CDC Criteria and, if I remember correctly, said something about them being similar. I said they're not.
Paul Davis (RiME) said that the overwhelming feedback from ME patients re. the clinics is negative:
Chair of Norfolk Group said they now have a ' ''CFS service'', which according to the Chief Executive of Norfolk PCT, '' ... incorporates a mix of GPs with a Special Interest, enhanced therapy input and access to other specialist input such as CBT'' ... It is clear that the general feeling in this part of the country is that anything other than biomedical treatment and/or research where ME is concerned is a waste of time, money and resources at best and actually harmful (both psychologically and physically) to ME sufferers at worst'.
The leader of the Manchester Group says a psychiatrist, who deems ME a psychosocial illness, is the Champion of the Manchester CNCC. He is also Chair of the whole English CNCC set up. Representations from Manchester ME Group rejected.
Birmingham: The B'ham Group broke off dialogue with health authorities July '05 - assurances had been given by S B'ham LMTD that ME/CFS services would operate independently from the psychiatric. This was not the case. A survey to ME attendees produced many zeros.
Leader of Winchester + Eastleigh Group: ' ...they call this (Southampton Clinic) the ME/CFS clinic when in reality it's the Hants.. Chronic Fatigue service.... We are meant to be reassured that the S'ton Clinic is modelled on the Wareham Clinic in Dorset.
From correspondence.. from PWME... I'm not... Wareham seems to show a strong psychiatric bias of it's own.... '
The leader of the Kent Group wrote to APPG chair recently, 'I attended the CBT clinic in Maidstone... it offers nothing to those with neurological conditions like ME... members feel the money would be better spent on biomedical research.... '
Common themes running through letters: ME patients
(1) would prefer to see the £8.5 spent on biomedical research
(2) suspect results will be skewed (imprecise admittance criteria) and used by the Govt as an excuse not to research the physical causes of ME.
RiME's position contrasts with that of AfME/MEA but there is a difference. RiME's is backed up with evidence - on it's website, no fewer that 20 pages (www.erythos.com/RiME - letters Sept' 06 - July '07).
Jill Piggott West Midlands ME Consortium criticised the way in which the CNCC Collaborative is placing too much emphasis on psychological aspects.
She condemned the proposed agenda for the forthcoming collaborative conference, especially the way it is dominated by the psychosocial approach to management.
Doris Jones 25% Group made reference to RiME's account and said she wanted it put on record - on behalf of the 25% ME Group - that, apart from the Norfolk clinic under Dr Terry Mitchell, experiences of members of this group at most other clinics were very similar to those which RiME described.
Many letters and emails were sent to the APPG Chair prior to the meeting. They raised concerns about the clinics and their authors asked they be included by proxy. None were. (Examples in Letters July '07, RiME Website).
Christine Harrison BRAME and Barbara Robinson East Anglia ME Network said the services provided by Dr Mitchell and his staff were appreciated by persons in East Anglia. 'An oasis in the desert' was one term used.
Annette Barclay asked what impact the NICE Guidelines (more GE/CBT... - ed.) would have on NHS clinical services and to what extent their guidance would be mandatory.
John Bercow MP said a Commons adjournment debate might be sought in the future but not this term. Dr Turner agreed.
Sir Peter Spencer AfME was appalled by the lack of MPs at APPG Meetings and said the absent members showed ignorance, prejudice and sheer injustice to PWME.
Des Turner MP + Chair said there was a deteriorating situation re. ME treatment, and that the budget should be increased in that respect. He mentioned changes at the Health Dept (Alan Johnson, new Secretary of State, Ben Bradshaw - ME remit). He said a minister would be invited to the next meeting. I got the impression that the clinics would be the main item on the agenda. I asked that the issue of ME research be discussed.
NB A colleague who has done sterling ME service in the face of great adversity asked me to read out a statement (there wasn't time july 12, so I do it now).
Sheffield: The former Chair of the North Derby group with 250 members condemns the Sheffield Clinic. Sent info. which showed the treatment involves CBT, 'I can't relate to this at all... '
Disclaimer: the above is based on scribbled notes and others' recollections of the meeting. I cannot guarantee 100% accuracy.
Overview
The arrangements for the meeting were quite bizarre. The speaker Dr Mitchell was someone who
(1) had addressed the APPG before
(2) no longer works with 'CFS/ME' patients at the James Paget Hospital. Wouldn't it have been more useful to invite a couple of doctors from other parts of England who hadn't previously addressed the APPG and who were currently working with 'CFS/ME' patients.
A number of people from East Anglia were present. It would appear that they want the current services, there, to continue. One party sent a letter to members of the APPG in May. The letter, which refers to biomedical services in East Anglia, appeals for further funding for the clinics (the letter also mentions services in other parts of England with a similar appeal).
Current services in Norfolk and Suffolk appear not to be about ME but Chronic Fatigue. A document entitled 'Waveney Primary Care Trust - Norfolk and Suffolk Chronic fatigue Service' says:
Front page: Recommendation... the transfer of the remaining staff working within the Chronic Fatigue Service from The James Paget Healthcare NHS Trust to Waveney PCT. The.. Executive Committee has agreed this is best for the clinical care of patients...
1 Introduction: .... Patients are assessed by a medical practitioner at either The James Paget or Northgate Hospitals before starting on a program of therapy led intervention aimed at helping the patient to better manage their own condition....
4.2 Staffing: The Head of Intermediate Care and Rehabilitation is responsible for the service which is led by a Specialist Occupational Therapy Practitioner....
Appendix 1 New Service Model: 1 Reduced medical follow-ups
2 Group intervention rather than individual
3 Enable GPs to better support their own patients
4 Patients discharged once goals have been met.... Moving to a therapy-led service....
The document does not mention the terms ME or biomedical.
Another piece 'Health News' Jan/Feb 2007 is on the Great Yarmouth and Waveney PCT website -
Dance Classes, badminton, tennis, Pilates, chair-based aerobics, t'ai chi, golf and yoga. These are just some of the physical activities that the 27 GP practices across Great Yarmouth and Waveney will be recommending their patients take up in 2007.
And these patients have one thing in common - they have a chronic (long-term) condition such as arthritis, MS, CFS (sometimes known as ME) or fibromyalgia...
Paul Price, Physical Activity Lead for Great Yarmouth and Waveney PCT....
'The aim is to focus on a person's ability rather than disability and to help them develop a positive mind-set....'
.... As well as the physical benefits, people also gain by getting out of the house and meeting other people which, in turn, gives them more confidence....
If delegations who purport to represent people with neurological ICD-ME (the G93.3 code was recognised by the APPG Nov. 2006) want to go Westminster re. the Clinics issue, I think they should think carefully as to whom they are representing and what they are doing.
The overwhelming feedback RiME gets is negative; this includes ME patients in East Anglia eg:
King's Lynn: ... I think the Norfolk PCT is a load of pants as far as neurological ICD-ME is concerned.
There is currently no specialist residing at the Great Yarmouth 'Chronic Fatigue' Centre but that's no loss as these centres were developed for people with chronic depression by a psychiatrist working outside this field, and cannot address the needs of ME patients.
Dance classes, badminton, tennis... being recommended... Obviously they don't know that ME and CFS are not the same and that exercise is very dangerous for people with ME...
I'm afraid to say that my experience re. APPG meetings has been quite depressing. It would appear to be primarily a vehicle for rubber-stamping Govt policy. Anyone who dares to voice dissent is usually either attacked during or after meetings or humoured. Its current objective seems to be endorsing the bit of chicken-feed which the Health Dept is investing in clinics which predominantly offer more GE/CBT modes of treatment. Biomedical research has not featured at recent meetings. Unless more (those who can) get active and vocal and quickly, it will continue to be same old, same old...
There will be a newsletter in the autumn, health permitting. RiME welcomes postage stamps.
RiME is unable to answer emails at present because it is experiencing computer problems.
Paul Davis RiME rimexx@tiscali.co.uk
11/08/07 RiME request for APPG Minutes to be amendedPERMISSION TO REPOST
Campaigning for Research into ME (RiME)
Minutes of APPG Meeting 12/7/07
The minutes for the above meeting were written by AfME (with the help of the MEA); then approved by the Chair. They are totally unacceptable in their current form and RiME has, accordingly, emailed and written to the APPG Chair with copies to AfME and MEA - see below. If you are also concerned, why not write to the three parties yourself; please send us copies.
Dr Des Turner MP
House of Commons
London, SW1A OAA
turnerd@parliament.uk
Nov. 8 2007
APPG Minutes 12/7/07
Dear Dr Turner,
First, according to the minutes the Chair Dr Des Turner said:
'The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority'.
This sentence is poorly written in that it is unclear as to what 'the letter' is. I think it is probably the letter from the leader of the Norfolk Group. I don't recall the Chair saying this, nor do others who were present. Accordingly, RiME is writing to all three parties (APPG Chair, AfME + MEA) asking if they are absolutely sure the statement was made. If I remember correctly, the Chair said something along the lines that there seemed to be some doubt over the veracity of the comments expressed in the letter.
What I read out on behalf of the leader of the Norfolk Group is below.
Here is my oral statement 12/7/07:
Paul Davis (RiME) said that the overwhelming feedback from ME patients re. the clincs is negative eg:
Chair of Norfolk Group said they now have a ' ''CFS service'', which according to the Chief Executive of Norfolk PCT, '' ... incorporates a mix of GPs with a Special Interest, enhanced threrapy input and access to other specialist input such as CBT'' ... It is clear that the general feeling in this part of the country is that anything other than biomedical treatment and/or research where ME is concerned is a waste of time, money and resources at best and actually harmful (both psychologically and physically) to ME sufferers at worst'.
The leader of the Manchester Group says a psychiatrist, who deems ME a psychosocial illness, is the Champion of the Manchester CNCC. He is also Chair of the whole English CNCC set up. Representations from Manchester ME Group rejected.
Birmingham: The B'ham Group broke off dialogue with health authorities July '05 - assurances had been given by S B'ham LMTD that ME/CFS services would operate independently from the psychiatric. This was not the case. A survey to ME attendees produced many zeros.
Leader of Winchester + Eastleigh Group: ' ...they call this (Southampton Clinic) the ME/CFS clinic when in reality it's the Hants.. Chronic Fatigue service.... We are meant to be reassured that the S'ton Clinic is modelled on the Wareham Clinic in Dorset. From correspondence.. from PWME... I'm not... Wareham seems to show a strong psychiatric bias of it's own.... '
The leader of the Kent Group wrote to APPG chair recently, 'I attended the CBT clinic in Maidstone... it offers nothing to those with neurological conditions like ME... members feel the money would be better spent on biomedical research.... '
(There are other examples ... )
Common themes running through letters: ME patients (1) would prefer to see the £8.5 spent on biomedical research (2) suspect results will be skewed (imprecise admittance criteria) and used by the Govt as an excuse not to research the physical causes of ME.
RiME's position contrasts with that of AfME/MEA but there is a difference. RiME's is backed up with evidence - on it's website, no fewer that 20 pages (www.erythos.com/RiME - letters Sept' 06 - July '07).
----------------------------------------------------------
Corroboration:
a. I sat next to Paul Davis 12/7/07 and took notes. I don't recall the Chair saying 'The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority'. The above is what Paul said. Joy Birdsey, Kent.
b. I was at the back of the Committee Room and taking notes. I don't recall the Chair saying 'The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority'. I do recall Paul Davis trying to read out the comments of five English Group Leaders. Annette Barclay, London.
----------------------------------------------------------
Contrast this to what is in the official minutes: with the exception of a question I asked Dr Mitchell re. admittance criteria, this is what I reportedly said:
'Paul Davis read out a letter from the Norfolk Group which listed dissatisfaction with CBT-led NHS specialist services amongst local support groups in Norfolk, Manchester and Winchester and Eastleigh, adding that money would be better spent on biomedical research'.
RiME's reported statement was (1) inaccuratre (2) 'selectively edited'. Consequently, RiME asks that the minutes be amended and it's contribution edited in full. This is necessary since (A) I was reading out the comments of five Group leaders (B) we feel that people should be invited to read the comments on RiME's website. The minutes then need to be redistributed to all those parties they were originally sent to.
Many appear to be of the opinion that the minutes were edited in such a way as to try to send out 'a positive message' (erroneously in their opinion) re. the clinics.
Yours Sincerely Paul Davis
cc:
Heather Walker AfME Floor 3 Canningford House 38 Victoria Street Bristol BS1 6BY Heather.Walker@afme.org.uk
Tony Britton MEA 4 Top Angel Buckingham MK18 1TH tbritton02@yahoo.com
Aftermath of APPG 12/7/07 - a summary"Blatant representation" All Party Parliamentary Groups on M.E. (APPGs)All Party Parliamentary Group on M.E.
Chair: Dr Des Turner MP Vice- Vice-Chairs: Andrew Stunell MP Tony Wright MP Secretary: Dr Ian Gibson MP Treasurer: David Amess MP
Meeting of the APPG on M.E. to be held on Thursday 17 May 2007, 1.30-3pm
Committee Room 17, House of Commons
AGENDA
1. Welcome by the Chairman, Dr Des Turner MP 2. Main speaker: Dr Ira Madan, Director of the NHS Plus project which recently published three guidelines, 'Occupational aspects of the management of chronic fatigue syndrome: evidence based guidance' for employers, healthcare professionals and employees. (Dr Madan must leave for another meeting by 2.30pm) 3. Apologies 4. Minutes of the last meeting 5. Matters arising - NICE - DWP - EDM 6. Mental Health Act and Mental Capacity Bill - the implications for M.E. 7. Code of Practice for the APPG on M.E. 8. Any Other Business 9. Date of Next Meeting Contact details: Des Turner MP, 179 Preston Road, Brighton BN1 6AG Tel: 01273-330610 Email: turnerd@parliament.uk
Minutes of February APPG
www.afme.org.uk/res/img/resources/APPG%20minutes%2022-02-07.pdf
News of APPG on M.E., 17 May 2007Director of NHS Plus guidelines project to attend APPG
Dr Ira Madan, Director of the NHS Plus project which recently published occupational health guidance on M.E., will appear before the next All-Party Parliamentary Group on M.E. Thursday, 17 May 2007, 1.30pm Committee Room 17, House of Commons
The three guidelines, 'Occupational aspects of the management of chronic fatigue syndrome: evidence based guidance' for employers, healthcare professionals and employees, have been condemned by M.E. charities asthey were drawn up without adequate consultation with patient groups.
Concerns include a statement under the key priorities for implementation that retirement should be deferred until cognitive behavioural therapy and graded exercise therapy (CBT and GET) have been explored.
Dr Madan will be present for the first hour of the meeting. The last half hour will be given over to other Group business, including discussion about the Mental Health Bill. The meeting will close at 3pm.
The agenda for this meeting and the minutes of the last meeting, held in February, are now available (from Action for M.E. and MEA websites) 05/17/07 Director of NHS Plus project at APPG on M.E., 17 May 2007 - Summary by AfMEThe meeting of the All Party Parliamentary Group met yesterday, 17 May 2007 in the House of Commons. Dr Ira Madan, Director of the NHS Plus project, said that she would be happy to include the WHO definition of M.E. as a neurological illness and was open to suggestions for further rewording of the guidance leaflets, if appropriate evidence was made available to her.
Dr Madan gave a presentation where she outlined the process by which the guidelines had been produced and addressed the points raised in the joint charities' statement on them.
Following questions from the ME Association (MEA), BRAME and others, her agreement came after Peter Spencer, CEO, Action for M.E., said:
"You mentioned that the guideline development group was not interested in clinical outcomes because their focus was occupational and that clinical outcomes were the responsibility of the National Institute for Health and Clinical Excellence (NICE). You also stated that the aim was to get people back to work as quickly as possible.
"The problem is that inappropriate treatments have caused damage to people. By focusing on trying to make things better for the majority of people in the workplace, you have, perhaps inadvertently, missed evidence and made decisions which could cause real harm for some people and particularly those with M.E.
"You said that you would not withdraw the leaflet but I hope that, after what you have heard, you would be receptive to evidence we could provide from eminent clinicians and be open-minded about amending the guidelines."
Dr Madan said, "I take your point. I think that would be useful."
Dr Charles Shepherd, MEA, asked if she would then be willing to meet with a small group of representatives from the APPG to reconsider the draft. Dr Madan said that she would.
Full minutes of the meeting will be available in due course.
Peter will send to Dr Madan the evidence which highlights the neurological nature of M.E. and the consequences for many people of persisting with inappropriate treatment, especially Graded Exercise Therapy.
05/17/07 Summary of APPG on M.E., 17 May 2007COMMITTEE ROOM 17: HOUSE OF COMMONS
IN ATTENDANCE:
Des Turner MP Sarah Vero (representing Ian Gibson MP) Koyes Ahmed (Researcher to Dr Des Turner)
AfME: Sir Peter Spencer, Trish Taylor, Heather Walker BRAME: Christine Harrison MEA: Charles Shepherd and Tony Britton Suffolk Youth and Parent Support Group: Barbara Robinson Sussex and Kent ME/CFS Society: Colin Barton and David Butler 25% Group: Doris Jones
Plus several members of the public
NHS PLUS - 1.30pm till about 2.40pm
Dr Ira Madan (Director of NHS Plus and Consultant in Occupational Health at St Thomas's and Guys Hospitals London) started off by describing:
Alan Milburn initiative to provide central guidance on occupational health issues Specialist Registrar in Occupational Medicine at BUPA Wellness in London consultation with stakeholders, DWP, NICE and Pat Noons at the DoH
Dr Madan explained that the main purpose of the NHS Plus guidance was to answer three basic questions:
to return to or remain in work in individuals who are currently absent from work relapse in terms of non attendance or poor functioning at work
She then went through the Joint Charities Response point by point and tried to respond to all the specific criticisms. NB: The joint charities response is available in the news section of the MEA website: http://www.meassociation.org.uk
There was very critical questioning during and after her presentation. Some of the answers were not at all convincing: eg it was decided to omit the term ME from any of the NHS Plus literature because it might confuse employers who are used to seeing CFS on sick notes!; two psychiatrists acting as external referees was not considered to be biased.
Dr Madan obviously believed that the three leaflets were fit for purpose ("We've had lots of positive feedback") but appeared to accept under pressure that some amendments might be made - but there would not be a complete rewrite.
She agreed to the MEA suggestion that there should be a meeting with a small group of charity representatives to discuss in more detail the criticisms being aired and possible amendments to the three leaflets. Des Turner pressed her on this and emphasised that a meeting date should not be delayed - ie in weeks rather than months.
In the meantime AfME are going to send her some more information on patient evidence on CBT and GET, which she should have received via NHS Plus last year. Dr Madan said it had never been received.
There was some discussion about the circumstances surrounding the decision by Chris Clark, former Chief Executive at AfME, to sign up to the guidance before he left his post last year. It was generally agreed that a lesson to be learnt here is that when a guideline group such as this includes a patient representative it should be someone with personal experience of the problems created by the illness.
Finally, there were questions about possible conflicts of interest - especially relating to members of the guideline development group and external referees having links to insurance companies. Dr Madan stated that no conflicts of interest had been declared.
EDM
Dr Ian Gibson MP was unable to attend so Sarah Vero reported that although the EDM remains suspended, it remains on the parliamentary agenda. One possible way forward is for the APPG to look at some rewording - and this will be discussed in the run up to the next APPG meeting. The MEA suggested that as publication of the NICE guideline in August may well be very close to an EDM finally being put forward, this issue might be incorportated into the wording of the EDM.
Sarah also reported that the work of the Gibson group was basically coming to an end. Some members wanted to move on and so there would be no revision of the report. There will be an announcement on the Gibson website: www.erythos.com/gibsonenquiry. NB: This announcement has now been made. It can also be read on the MEA website.
NICE
The MEA gave a brief update on developments at NICE.
First was some feedback from the House of Commons Health Committee Inquiry into NICE that Charles Shepherd and Doris Jones had attended in the morning. The Wilson Room in Portcullis House was packed - standing room only. Some of the DoH responses to questions from the MPs brought to mind the phrase 'wading through treacle'. Sir Michael Rawlins and Andrew Dillon from NICE were rather more open about the financial problems (ie the 'postcode lottery') resulting from NICE recommendations. David Amess (ME APPG member) asked about the NICE guideline on ME/CFS. Sir Michael Rawlins responded by saying how important the views of patient representatives now were to NICE! NB: There has also been a joint charities submission to the Health Committee Inquiry into NICE.
The MEA informed the APPG about our discussions with Professor Richard Baker (Chairman of the ME/CFS Guideline Development Group), and that there would be an MEA public meeting on Saturday September 15th to discuss the NICE guideline. Professor Baker and other members of the NICE team will be there to present the guidance and answer questions. Details about the venue and time of this meeting will be made available on the MEA website fairly shortly.
DWP
It appears that some further amendments were being made to what everyone had assumed was the final final draft of this new medical guidance relating to DLA applications. The MEA reported that the charities would be monitoring the situation very closely once the new guidance comes into effect - presumably still in early June.
NHS SERVICES
Problems with the past (ring fenced), present, and future financing of the new NHS clinical services were raised by Christine Harrison and Barbara Robinson - with particular reference to what is happening in the new East of England SHA and East Anglia CNCC regions (ie Suffolk, Norfolk, Peterborough, South Cambs, Waveney). It was decided that NHS services would be the main topic for discussion at the next APPG meeting and that Patience Wilson, National Service Framework Manager at the Department of Health, and the Secretary of State for Health (Patricia Hewitt if she is still there), would be invited to attend. Patience Wilson has taken over responsibility at the DoH for ME/CFS from Pat Noons.
MENTAL HEALTH REFORM BILL
Discussion deferred to next meeting as Di Newman was unable to attend.
APPG CODE OF CONDUCT
Nothing new to report
DATE OF NEXT MEETING
Provisionally arranged for Thursday 12 July - this will also be the APPG AGM and the last meeting before the summer recess.
Thanks to Dr Des Turner MP for chairing a very full, lively and interesting meeting.
Summary prepared by Dr Charles Shepherd, Medical Adviser to the ME Association. The official minutes are being prepared and will appear later.
AfME News: NICE Chair to attend APPG
01 February 2007
Sir Michael Rawlins, Chairman, National Institute for Health and Clinical Excellence, will appear before the next All-Party Parliamentary Group on M.E., Thursday, 22 February 2007, 1.30pm - 2.30pm, Committee Room 17, House of Commons
The clinical practice guideline being developed by NICE for CFS/M.E. is due to be published in August. It will be the first time in four years that the NHS has drawn up guidance on the assessment, diagnosis and treatment of the illness which affects up to 240,000 adults and children in the UK.
The draft guideline was vigorously condemned by M.E. charities and patient groups after it was published in September.
A number of concerns were voiced at the last APPG, the minutes of which are now available.
Please do your best to attend this meeting.
Meeting of the APPG on M.E. to be held on Thursday 22nd February, 1.30-2.30pm Committee Room 17, House of Commons
AGENDA
1. Welcome by the Chairman, Dr Des Turner MP
2. Main Speaker:
Sir Michael Rawlins, Chairman, National Institute for Health and Clinical Excellence (or substitute) will speak on the NICE clinical practice guideline for ME/CFS which is due to be published in August.
3. Apologies
4. Minutes of the last meeting
5. Matters arising
6. Mental Health Act and Mental Capacity Bill - the implications for ME (via Di Newman, Peterborough ME and CFS Self-Help Group)
7. Code of Practice for the APPG on M.E. Copy of previously considered draft will be tabled
8. Any Other Business
9. Date of Next Meeting
NOTICE: APPG on ME, Thursday, 22 February, revised details.
Tony Britton, ME Association, for the APPG joint secretariat
We have just had it confirmed that Professor Michael Rawlins, chairman of the National Institute for Health and Clinical Excellence, will be unable to attend the meeting of the All-Party Parliamentary Group on ME at Westminster on Thursday (22 February 2007).
Instead, NICE will be represented at the main discussion on the draft clinical guideline for CFS/ME, due to be published in August, by two people. They will be Professor Peter Littlejohns, Clinical and Public Health Director of NICE, and Dr Esther Crawley, Consultant Paediatrian and Guideline Development Group member.
The meeting is going ahead as planned - in Committee Room 17, House of Commons, between 1.30 and 2.30pm. Enter Parliament through the St Stephen's entrance.
So far eight MPs have indicated they will be attending the meeting. They are:
Dr Des Turner MP (Chairman); Dr Ian Gibson MP (Secretary), for at least the first part of the meeting; Andrew Stunell MP (Vice Chairman), for the first half an hour; Peter Luff MP; Dr Julian Lewis MP ; John Baron MP (or his researcher); Betty Williams MP; and Kelvin Hopkins MP
Tony Britton, ME Association for the APPG joint secretariat
RiME's Summary of APPG on M.E., 22 February 2007The main speakers were Professor Peter Littlejohns, Clinical and Public Health Director (NICE) and Dr Esther Crawley, Consultant Paediatrician and Guideline Development Group member.
In a brief introduction, Prof. Littlejohns talked generally about the NICE Guideline Development process. Since 1999 he has been responsible for the overall process of producing clinical guidelines. He then handed over to Dr Crawley who sees around 150-200 children and adolescents with CFS each year. She said that CFS was a diffuse condition which was difficult to diagnose and that, consequently, it was hard to write guidelines.
She waffled about 'areas of challenge', 'direction and scope' and 'consultation'. They said they wanted to look at all forms of evidence re. management (not just randomised controlled trials) but evidence pertaining to what? Not neurological ICD-ME, it would appear.
Points which emerged during the meeting:
1. The intention is to publish the Guidelines in August 2007 (postponed from April). This was to do with feedback being one of the largest ever.
2. There will be no further consultation with ME organisations, it appeared.
3. If ME organisations still deem it 'unfit for purpose', it would still be published.
4. They do not seem to recognise ICD G.93.3 and deem CFS? biopsychosocial.
5. It appeared that GE, CBT would be offered as options not dogmatic ecommendations.
6. It was acknowledged that an opening statement in the current draft - When the adult or child's main goal is to return to normal activities then the therapies of first choice should be CBT or GET.... was badly worded and it looks as though it will be withdrawn.
Hugh Berger said there was a huge amount of biological information which was being ignored and raised the issue of WHO's classification of ME (neurological illness ICD 10 G.93.3). He fronted the above two re. the WHO definition, 'do you recognise it?' but did not get a definitive answer. They did not appear willing to include it in the shortened version - the one that will be read by doctors
Charles Shepherd (MEA) raised concerns and issues re Graded Exercise and CBT.
Paul Davis (RiME) said that RiME condemned the NICE Guidelines and that it was more misinformation based on misinformation. The early chapters of the Draft did not get to grips with the pivotal issue of nomenclature. What follows, therefore, was skewed and misguided. Via HD Publications treatments, notably GE, harmful to ME patients are being recommended:
CMO Report Section 46: GE is a form of structured and supervised activity management that aims for gradual but progressive increases in aerobic activities such as walking and swimming. It is based on a principle... that a principal factor maintaining the illness is inactivity...
The Occupational Aspects of the Mangement of CFS, P.2 .... CBT and GE have been shown to be effective in restoring the ability to work in those.. currently absent from work....
People with neurological ICD-ME find them offensive. (I was going to say that ME patients are seeking legal advice. I was cut off by the Chair but mentioned the law later).
Christine Harrison BRAME talked about the importance of definitions, and the plight of severely affected people with ME.
Criona Wilson (Sophia Mirza's mother) talked movingly about her daughter's history. How she had been locked up in a mental hospital due to ME being mistaken for mental illness and two years later died. Also, how the WHO Guide was being ignored, and that the physiological aspects of the Guidelines needed to be strengthened.
Tony Wright MP talked of how the Govt had a duty to protect the public against the medical profession, and listen to families.
Di Newman said the Guidelines were muddying the waters, and that ME was being portrayed as a psychological illness.
Ciaran Farrell said that G.93.3 was mentioned at the back of the Guidelines but not discussed in the text. The early sections dealt with definitions of CFS not ME. Why was the Canadian Criteria not looked at? The Guidelines were based on The York Review 2 (biased toward psychiatry) and, consequently, they:
(1) were flawed
(2) used randomised controlled evidence. Particularly worrying is Section 1.3.1.20 which says that exercise or physical activity should be maintained during setbacks.
Angela Murphy AfME spoke at this stage but I had difficulty picking up what she said. Another report says she said she was disappointed not only with the draft guidelines but the consultation process. One of her points led Dr Crawley to talk about epidemiology. She said that epidemiological work hadn't been done and this needs looking at. I said 'you're the Health Dept, don't talk it, just do it'.
Doris Jones (25% Group) made 4 points:
(1) GE/CBT is known to cause harm
(2) The Guidelines are not fit for purpose
(3) Dr Crawley is involved with NICE and AYME, is there a conflict of interests?
(4) The recent Florida Conference had reported further organic evidence pertaining to ME. Studies showed damage to mithochondria and DNA: how can GE/CBT address this?
At 2.25 pm Des Turner MP Chair left the room for 10 minutes. There was no other MP present to chair (the other 3 had left) and there was a bit of a free for all.
Di Newman spoke briefly about the Mental Health Act and the implications for ME patients. She reinforced the concerns raised by Criona Wilson earlier: How people could be detained under its powers. She believed there is a connection with GE/CBT in that these are presented by the Govt as the only treatments for people with 'CFS'. Di mentioned the Precautionary Principle with reference to NICE. We need it in the ME world as this would mean that anyone sitting on the NICE, DWP (or any other committee) should not be able to do so if they are also sitting on drug, insurance (or any other committee). This is clearly the case with ME, and the conflict of interests needs to be addressed.
Any other business: I made a point on behalf of the leader of the Kent/Maidstone Group: 'The Kent Clincs are irrelevant to people with neurological ICD-ME. The Group welcomes the fact that the APPG now recognises G.93.3 but is the APPG Chair aware that patients who meet the G.93.3 criteria should be excluded by definition?' The Chair said he wasn't. I pointed out that he had appeared to support the Kent Clinics at the July '06 APPG meeting. I think he said something about 'take it up later'. I said I had already written.
Copies of the EDM prepared by Dr Ian Gibson were handed out:
This House recognises Myalgic Encephalomyelitis (ME) as a serious, long term, debilitating illness, that affects more people in the UK than HIV/AIDS;
welcomes the Group on Scientific Research into ME's Report 'Inquiry into the status of CFS/ME and research into causes and treatment';
notes the Department of Health classification of ME as a neurological condition; calls on all government departments to accept this definition;
calls for the implementation of internationally recognised clinical and research criteria which reflect the Department of Health classification, similar to the guidelines used in Canada;
calls for the collation of national epidemiological data of ME patients based on this criteria;
calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research; calls for massive further research into potential aetiology and treatments of ME.
Disclaimer: The above is based on scribbled notes, and it was not easy to hear some of what was said. I've tried to get it as accurate as possible, liasing with others, but cannot guarantee 100% accuracy.
Paul Davis
We welcome people's views on the Gibson Report/Inquiry.
From Doris Jones, 25% Group Representative
It was quite well attended - probably 25-30 people there, but few MPs (think a few more had come early and then quickly departed, before the meeting really started).
The two representatives from NICE were there, but did get what you might call 'a real roasting', especially Dr Esther Crawley. She started off by stating the well-known old mantra, i.e. that there was no point in differentiating between physical and psychological aspects of any illness, and admitting that she firmly believed in the biopsychosocial model of CFS/ME. However, she very quickly came unstuck when being questioned about NICE accepting the WHO classification of ME/CFS as a neurological disease, and just would not (or could not) give a clear-cut answer.
From then on it was largely a question of 'dodging all those criticisms' and she was clearly floundering. Professor Peter Littlejohns said he had been involved in the process since 2001 (I think), but really didn't know much about it all and simply produced a lot of what you might call 'diplomatic waffle'.
I don't think anyone had anything decent to say about the draft guidelines, and it was very much a question of heaping criticisms upon criticisms, even Angela Murphy from AfME spoke out in very clear and determined terms, expressing her great disappointment not only about the draft guidelines themselves, but also about the entire consultation process. Charles Shepherd, too, was highly critical and circulated copies of the joint charities statement to everyone present. He also stressed that when push comes to shove, every institution or organisation involved in dealing with issues related to ME/CFS at some stage has to come off the fence and declare its position, i.e. whether they accept the WHO classification of ME/CFS as a neurological condition or not.
I think - maybe - just maybe! - there may be a second consultation before the final guidelines are published later this year. It was requested by several people, and although no guarantee was given by the two NICE representatives that this was going to happen, Professor Littlejohn indicated that this was one possible option which NICE might consider.
I took with me copies of Margaret Williams' 8-page summary of key findings from the Fort Lauderdale IACFS Conference 'Facts from Florida', copies of which were given to the two NICE representatives and to Dr Des Turner, but I had also prepared two separate A4 sheets, in one extracting some key points from this document, the other extracting some specific problems from the same document.
When I was given the chance to speak I not only raised the 3 main issues we had discussed in the morning, i.e.
1) In proposing CBT + GET as main approaches, there was the potential to do immense harm to many patients;
2) that the 25% ME Group wants a re-write of the guidelines - not just a 'tinkering around the edges', adding 'THE PRESENT DRAFT IS NOT FIT FOR PURPOSE'; and
3) I said that as far as Dr Crawley was concerned, it was felt that there might be a conflict of interest, inso far as she is a medical advisor to AYME, and therefore could not represent both the interests of NICE as well as the interests of patients with ME/CFS (I didn't go as far as asking that she resign her position as medical advisor to AYME). - Attached are copies of 'Some Key Points from the January 2007 Fort Lauderdale IACFS Conference ...' and 'Some Specific Problems' (from the Fort Lauderdale IACFS Conference - Jan 2007). After raising the 3 main concerns of the 25% ME Group, I read out the details of 'Some Key Points from the January 2007 Fort Lauderdale IACFS Conference ...', finishing with the question at the end. - Christine Harrison then spoke and said she agreed with everything I had said.
So - I think the two NICE representatives went away feeling rather 'bruised'. 'GUS' - Stephen Ralph's friend - said to me after the meeting that he had never come across any official representative from a professional institution who was so completely lost for words as Dr Esther Crawley had been at this meeting. - There can be no doubt about it that these 2 people from NICE can believe for one moment they can somehow riggle out of all the criticisms and do what they want.
They admitted that they were still looking at all the feedback they had received, but would not give any clear-cut decision or answers to any of the many questions and queries raised.
We shall have to wait and see what happens. We have all done what we possibly could - the rest of it, as they say, is in the 'lap of gods'. We pray ... and some more!
Best Wishes
Doris
Lets hope they reconsider and allow for further consultation on the NICE Guidelines, which in the opinion of nearly all the charities, are; NOT FIT FOR PURPOSE
Brief Personal Notes on the APPG on M.E. Meeting, 22 February 2007 Dr Charles Shepherd, Medical Adviser, MEALIST OF THOSE PRESENT
Des Turner MP - Chairman Andrew Stunell MP - Vice Chairman Tony Wright MP - Vice Chairman Peter Luff MP Dr Esther Crawley, Professor Peter Littlejohns and Adrian Ward - representing NICE Sarah Vero - research assistant to Dr Ian Gibson MP Doris Jones - 25% Group Fiona Cairns, Angela Murphy, Heather Walker - AfME Christine Harrison - BRAME Dr Charles Shepherd and Tony Britton - MEA Paul Davis - RIME Hugh Berger Jo Dubiel Ciaran Farrell Gus John Diane Newman Clive Page Jill Pigott Criona Wilson
Apologies were received from a number of MPs and Jane Colby (Tymes Trust).
Before the meeting started Dr Turner asked that if anyone was intending to tape record the meeting then this should be made clear at the start.
All of those present were provided with a copy of the joint statement on the September 2006 draft of the NICE guideline that had been prepared by the patient support charities and organisations (ie 25% Group, AfME, AYME, BRAME, CHROME, ME Association, National ME Centre, Tymes Trust)
PRESENTATION BY REPRESENTATIVES FROM THE NATIONAL INSTITUTE FOR HEALTH AND CINICAL EXCELLENCE (NICE)
The main part of the meeting - lasting from about 1.40pm to 2.45pm with an interruption for a division bell at 2.30pm - was devoted to presentations and discussion involving Dr Esther Crawley (Consultant Paediatrician who sees around 150 - 200 children and adolescents with ME/CFS each year and is a member of the NICE Guideline Development Group) and Professor Peter Littlejohns (Clinical and Public Health Director at NICE). They had agreed to attend in place of Professor Michael Rawlins. The presentations were followed by a question and answer session.
Professor Littlejohns started off by giving some general information on the NICE guideline development process. Since 1999 he has been responsible for the overall process of producing clinical guidelines at NICE - the organisation that now produces more guidelines on health topics than any other similar body in the world.
Dr Crawley briefly described the process relating to ME/CFS.
These two short presentations mostly covered very familiar ground - all information is based on the best available evidence to answer clinical questions; an active consultation process; nothing is set in stone etc etc. However, it was interesting to note that NICE are now giving a clear indication that they wish to be far more receptive in relation to looking at all forms of evidence regarding management options - the results of randomised controlled trials are not necessarily at the top of the hierachy of evidence. This appears to be a significant and recent shift and is something that is obviously very relevant to the ME/CFS guideline.
Among the main points to emerge:
a.. There appears to be no more room for public and stakeholder consultation on the content of what NICE believe is going to be the final version.
b.. The intention is still to publish the final guidance in late August and it looks as though the charities will not have access to the guideline before publication.
c.. Feedback on comments sent in on the September draft will be made available before publication.
d.. It was put to NICE in very forceful terms that in view of the importance of getting things right, especially in view of some of the information that had come from patient representatives during the course of the meeting, there should now be a further delay in publication. This was not greeted with any enthusiasm by NICE.
e.. In response to a question about whether NICE would still publish the guideline if it was clear that patient representatives still regarded it as unfit for purpose, and patient representatives on the GDG refused to endorse it, the answer was that publication would still occur.
f.. However, it was pointed out that there has been one precedent for a final NICE guideline not being published.
g.. On the issue of WHO classification of ME/CFS as a neurological disorder in G93.3 of ICD10, the NICE representatives had great difficulty in giving a clear answer as to whether NICE supported this classification. They did not appear to be receptive to including this information in the shortened version - the copy that will be read by doctors.
h.. When questioned as to whether ME/CFS was primarily a physical or psychological illness, the best answer that could be obtained was that it was 'biopsychosocial' - in other words there are physical, psychological and social aspects all interacting. It was pointed out that in the real world official bodies such as the DWP do make decisions on whether an illness is physical or psychological.
i.. On the issue of behavioural interventions - ie CBT and GET - there were several contributions from the floor regarding the unacceptability, lack of effectiveness and potential harm that can arise from these approaches. The NICE position appeared to be that the guideline would be offering these as options to patients rather than dogmatic recommendations about their use by health professionals. It was acknowledged that an opening statement in the current draft - When the adult or child's main goal is to return to normal activities then the therapies of first choice should be CBT or GET.... was very badly worded and it looks as though this will now be withdrawn. It was also pointed out to NICE that people with ME/CFS want to get better and that the reference to those whose main goal is to return to normal activities was offensive and insensitive
j.. Issues relating to the severely affected and how these had not been properly addressed in the guideline were once again emphasised by several charity representatives.
k.. There appeared to be acknowledgement from NICE that the guideline had not made a good case for more research into biomedical aspects of ME/CFS.
l.. Defects in the methods for collecting feedback from stakeholders and people with ME/CFS during the consultation process on the September 2006 draft were highlighted.
m.. NICE acknowledged that the volume of feedback received from stakeholders and other interested parties was one of the largest they had ever received - and this was the main reason for the delay in publication from April to August. Among the contributions from the floor was a very moving account by Criona Wilson of events leading up to the death of her daughter, Sophia Mirza.
By the time the NICE discussion had finished, the meeting was running well over time - so discussion on remaining items was either brief or deferred till next time.
MENTAL HEALTH ACT AND MENTAL INCAPACITY BILL
Discussion deferred till next meeting
NEW CODE OF CONDUCT FOR APPG MEETINGS
Further discussion deferred to next meeting.
EARLY DAY MOTION (EDM)
This has now been prepared by Dr Ian Gibson, who was unable to attend the meeting. Copies of the EDM were handed out by his research assistant, Sarah Vero.
Wording of the EDM This House recognises myalgic encephalomyelitis (ME) as a serious, long term, debilitating illness, that affects more people in the UK than HIV/AIDS;
welcomes the Group on Scientific Research into ME's Report 'Inquiry into the status of CFS/M.E and research into causes and treatment';
notes the Department of Health classification of ME as a neurological condition;
calls on all government departments to accept this definition;
calls for the implementation of internationally recognised clinical and research criteria which reflect the Department of Health classification, similar to the guidelines used in Canada;
calls for the collation of national epidemiological data of ME patients based on this criteria;
calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research;
calls for massive further research into potential aetiology and treatments of ME.
NEXT APPG MEETING
Date to be arranged - probably after Easter.
It is hoped that the NHS Plus guideline on employment will form part of the agenda at this meeting and that a representative from this guideline group will be able to attend NB: It isn't always easy contributing, helping to administer a meeting, and taking notes at the same time. So please let me know if anything appears to be factually incorrect and apologies if I have spelt any names incorrectly. This is a personal note of the meeting for the MEA. The APPG minutes will be produced by the charity secretariat in the normal way.
Dr Charles Shepherd Medical Adviser, ME Association
Agenda APPG for ME meeting and AGM, Thursday 16 November 2006ALL-PARTY PARLIAMENTARY GROUP ON ME
Chair: Des Turner MP Vice-Chairs: Andrew Stunell MP Tony Wright MP Secretary: Steve McCabe MP Treasurer: David Amess MP
Agenda
1.30pm Thursday 16 November 2006 Committee Room 17, House of Commons, Palace of Westminster
1. Welcome
2. Apologies for absence
3. Secretary of State for Work and Pensions, the Rt Hon John Hutton MP, discusses proposals to revise the medical guidance on M.E. / CFS for Disability Living Allowance and Carer's Allowance decision makers (1.30 - 2pm)
4. Minutes of the last meeting
5. Matters arising
- confirmation of AGM appointments
- other
6. Update on consultations on the draft NICE guideline on M.E.
- attendees are invited to bring summary reports / written comments so that information may be circulated in hard copy if discussion is limited by time constraints
7. AOB
8. Date and time of next meeting
Contact details: Dr Des Turner MP, 179 Preston Road, Brighton BN1 6AG Tel: 01273 330610. E-mail turnerd@parliament.uk
11/16/06 Minutes for APPG on M.E., 16 November 2006The minutes for the last meeting of the APPG are now available on the MEA news blog:
Thursday, February 01, 2007
APPG on ME - minutes of last meeting (Nov 2006)
All Party Parliamentary Group on M.E. Chair: Des Turner MP Vice-Chairs: Andrew Stunell MP Tony Wright MP Secretary: Ian Gibson MP Treasurer: David Amess MP
Minutes of the meeting of the All Party Parliamentary Group on M.E.
Held 1.30pm, Thursday 16th November 2006
Committee Room 17, House of Commons
PRESENT
Dr Des Turner MP Dr Ian Gibson MP Steve McCabe MP Tony Wright MP Betty Williams MP Andrew Stunell MP Koyes Ahmed, Office of Dr Des Turner MP Louise Leighton, Office of Tony Wright MP Adrian Ward, NICE Dr Charles Shepherd, The ME Association Fiona Cairns, Action for M.E. Tony Britton, The ME Association Heather Walker, Action for M.E. Doris Jones, 25% Group Barbara Robinson, Suffolk Youth Parent Support Group, East Anglia Patient Partnership (EAME) Paul Davis, RiME Annette Barclay, person with M.E. Jo Dubiel, person with M.E. Rosemary de Hussy, Youth and Carers for M.E., member of World M.E. Committee Augustine Ryan, person with M.E. Clive Page, father of person with M.E.
APOLOGIES
David Borrow MP, Peter Bottomley, Russell Brown MP, Janet Dean MP, David Drew MP, Andrew George MP, Mike Hancock MP, Dr Evan Harris MP, Kelvin Hopkins MP, Dr Brian Iddon MP, Peter Luff MP, Dr Richard Taylor MP, Mark Todd MP, Rudi Vis MP, Hywel Williams MP
1. WELCOME
Dr Turner welcomed everyone to the meeting, especially guest speaker, the Rt Hon John Hutton MP, Secretary of State for Work and Pensions.
2. GUEST SPEAKER
The Secretary of State thanked Dr Turner for inviting him to join the Group to discuss welfare reform, guidance and benefits, including the draft medical guidance on M.E. / CFS for DWP decision-makers adjudicating claims for Disability Living Allowance (DLA) and Carer's Allowance.
He said that the Welfare Reform Bill which is going through Parliament will replace Incapacity Benefit (IB) with a new benefit, Employment and Support Allowance (ESA). The Department for Work and Pensions (DWP) had consulted widely on the Bill, which marks the next stage in the Government's plans to modernise the welfare system. He said the Bill was not about trying to force people to do work they were not able to do, as that would be wrong on medical and ethical grounds. Incapacity Benefit had failed: people were becoming more socially isolated and less well off. Government needed to provide help and support in getting people back into work.
Mr Hutton said that conditions like M.E. are problematic because of the fluctuating nature of the illness. Disagreement amongst the medical profession made the work of decision makers more difficult. Government recognised that too many people had to go to appeal before they received the benefits to which they were entitled. The Government aimed to cut down the number of appeals by improving decision making.
Mr Hutton said that, however much consultation took place, where medical opinion differed, it would be impossible to achieve consensus and there would be 'hot spots' of disagreement. Under these circumstances, the DWP's job was to ensure a fair and transparent process.
With regards to Disability Living Allowance, the DWP would not be in a position to issue guidance until 2007. There was still the opportunity for people to be involved in the process. The next draft would be available soon.
Dr Turner noted that the Secretary of State rightly wanted to achieve high standards of professionalism amongst DWP staff and commented that high standards were also required in terms of medical input.
Mr Hutton replied by saying that the process of assessing people is done through Atos Origin. The DWP is working with Atos Origin to make sure they fulfill their contractual obligations.
Andrew Stunell made the point that there was a risk of 'payment by inverse results' ie. the fewer the people who were paid state benefits, the more successful the assessors and the medical guidance on M.E. might be seen to be.
Mr Hutton rejected this saying that it is a myth that there is a conspiracy to stop people getting benefits. The Government has given vulnerable people a statutory right to benefits and it is the DWP's job to give benefits to those who are entitled to them.
Consulting on the guidance is a way to improve the decision making process. Charles Shepherd said that the drafting of guidance for DLA decision makers had taken 18 months so far and consultation had reached an impasse at version 8. There was a fundamental problem in that those drafting the guidance were receiving advice from a neurologist who did not believe in the biological nature of the illness.
Mr Hutton said that Ministers make decisions based on medical advice given, which is difficult when there is dispute among the medical profession. He had not realised that there had been so many drafts of the guidance.
Dr Turner asked Mr Hutton if the DWP had taken account of the Chief Medical Officer's Report. Mr Hutton said 'we're trying.'
Barbara Robinson made a number of points, citing examples of good practice in guidance, asking how people who may be too ill too express themselves can be properly assessed, saying assessors are not adequately trained to assess people with M.E and pointing out that local GPs should get more interested and involved in M.E. cases, make more home visits and be asked to provide more evidence for the assessment process.
Mr Hutton did not dispute that better medical assessments were required and said that the DWP would listen to any sensible suggestion which helps to achieve that. He agreed that there should be more home visits for the severely affected if people wanted them.
Annette Barclay asked if Atos Origin were subject to any contractual penalties. Mr Hutton said he would write to Dr Turner, as Chair of the APPG, with details.
Mr Hutton said that it was right and proper for the DWP to assess a person's ability to work even if they have a disability and wrong to leave a person with benefits but without adequate help and support. He invited anyone with specific concerns about DWP assessments to raise them in writing through Dr Turner as Chair of the APPG and that he as Secretary of State would respond.
Doris Jones voiced concerns that the psychiatric bias towards M.E. / CFS was already apparent in Occupational guidance recently published by NHS Plus and in the draft NICE guideline.
Mr Hutton was unable to comment on guidelines not drafted by his Department but presumed the Department of Health, like the DWP, had acted on expert advice received. He said he would raise the issue with the Secretary of State for Health.
Dr Turner thanked Mr Hutton for his attendance.
The Secretary of State left the meeting at 2.10pm
3. Group business
a. Minutes of last meeting
Doris Jones had submitted a written request for a change under 3.iii.e., as, in her experience and contrary to what was stated, DSS/DWP assessment was better 16 years ago than it is today. Clive Page asked that the minute also be changed as it implied that he and Doris Jones were both parents of the son and daughter noted, rather than members of separate families.
b. Election of Office Bearers
A question had been raised about the quoracy of the Annual General Meeting on 20 July 2006. Accordingly, the business of the Annual General Meeting was revisited and the following Office Bearers were elected:
Dr Des Turner MP (Chair), Anthony Wright MP (Vice-Chair), Andrew Stunell (Vice-Chair), David Amess (Treasurer), Dr Ian Gibson (Secretary).
The Chair took the opportunity to ask Ian Gibson for an update on the Inquiry into the progress of scientific research into M.E. since the Chief Medical Officer's report. Dr Gibson said that the Inquiry's report would be published very shortly, and would be submitted to NICE in time to meet its deadline for the close of the close of their consultation on ME/CFS Guidelines. He said that members of the Inquiry Group were as frustrated as many people with M.E. were by the lack of research and that the research undertaken in the UK to date was very one-sided. The Chair welcomed his comments and looked forward to the publication of the report.
c. APPG definition of M.E. and Code of Conduct
The Chair circulated a draft code of practice for the APPG (attached), which stated that: "The APPG and the Secretariat (Action for M.E. and the M.E. Association) accept the WHO Classification of M.E. as a neurological condition and welcome the recognition by the Department of Health of M.E. as a long term neurological condition. The APPG strives to support the improvement of health, social care, education and employment opportunities for people affected by M.E. The meetings of the APPG are held in public and it is expected that attendees will adhere to the principles of best practice in meetings" (which were listed).
Comments were invited.
4. Draft NICE guideline
The Chair asked for views on the draft guideline on the diagnosis and management of M.E. / CFS, produced by the National Institute for Health and Clinical Excellence (NICE). He felt the documents were extremely problematical, and ran to so many pages that they probably would not be read by the medical profession any way.
Dr Gibson agreed, saying few people would have the patience to read the guidance. He said they would be taken back to be rewritten.
Paul Davis said that the NICE guidelines ignore the WHO classification of M.E., and that that there were problems with terminology which made the guideline skewed towards vague chronic fatigue conditions and irrelevant to the assessment, diagnosis and treatment of people with M.E.
Charles Shepherd complained that NICE had paid lip-service only to the consultation process. Strongly expressed views from experienced clinicians had been airbrushed out.
NICE proposed Cognitive Behaviour Therapy and Graded Exercise Therapy as treatments of first choice without taking the economics into account: where were the CBT therapists who could treat an estimated 180,000-200,000 patients who might benefit from it? The cost of each course of CBT had been estimated at £1,000. If the recommendation was pursued that could result in the NHS being burdened with additional expenditure of £200m a year.
Dr Turner said there was one safety valve - the guideline would not be mandatory. He suggested that, as people felt so strongly on the issue, NICE should be invited to address the next meeting.
Adrian Ward, from NICE, said he was attending only in the capacity of an observer but he would make sure the views of the APPG were passed on to colleagues. He said that NICE were planning to publish the guideline in April.
Paul Davis said the APPG and the ME charities, ever since the Chief Medical Officer's Report in 2002, had been sidetracked by issues around the treatment of ME. What RIME's supporters wanted was for the focus to be entirely on research issues.
5. Any Other Business
The Chair said he had received a request from Di Newman, from Peterborough, who was not at the meeting, that discussion be held on the Mental Health Bill now in Parliament. It was agreed to put the item on agenda for the next meeting.
6. Next Meeting
At the Chair's suggestion, members agreed that Sir Michael Rawlins, Chairman of the National Institute for Health and Clinical Excellence, be invited to address the next meeting about our concerns about the proposed NICE clinical guideline for CFS/ME.
He hoped a convenient date could be found early to mid-February.
The meeting closed at 2.41pm
Appendix attached.
APPENDIX
DRAFT CODE OF PRACTICE FOR THE ALL PARTY PARLIAMENTARY GROUP ON M.E.
1. The APPG and the Secretariat (Action for M.E. and the M.E. Association) accepts the WHO Classification of M.E. as a neurological condition and welcomes the recognition by the Department of Health of M.E. as a long term neurological condition.
2. The APPG strives to support the improvement of health, social care, education and employment opportunities for people affected by M.E.
3. The meetings of the APPG are held in public and it is expected that attendees will adhere to the principles of best practice in meetings:
Attendees will abide by the APPG Governance Procedures and Practices
This means that the attendees will honour the policies set up by the APPG to govern its own activities, including meeting protocols, committee rules etc. It is anticipated that attendees will follow basic rules of personal courtesy, attendance and being prepared.
The APPG and the Secretariat recognise the connection between the behaviour of individuals in meetings and the ability of the APPG to address their business effectively.
Attendees will be expected to participate so that APPG business progresses smoothly and efficiently.
Participants will give apologies ahead of time to the Chair if unable to attend meetings.
The Secretariat will ensure that information is distributed prior to meetings, allowing participants time to read and digest important information ahead of a discussion.
Attendees will honour the authority of the Chair and respect his/her role as the meeting leader. When problems arise with meetings they should be dealt with as procedural issues rather than a personal criticism of the Chair and other officers.
Participants will engage in debate according to procedures, maintaining a respectful attitude towards the opinions of others whilst making their own point.
Attendees must express their views clearly when it is their turn to speak and then allow others to express their opinions in turn.
Attendees must listen respectively to other meeting participants, to the Chair and to other speakers. They must not attempt to silence minority opinions, nor should they talk over others.
Attendees must not use their mobile phones in meetings or adopt any other bullying tactics.
Attendees are invited to offer suggestions to the Secretariat or the Chair on how best to enhance the role and function of the APPG.
These guidelines are produced as a method of efficiency. If an individual attendee does not comply with the code the Chair may institute a warning system. The APPG anticipates that debate should be lively but controlled and every effort will be made to hear a wide range of different opinions and elicit the opinions of those who may be inclined to be silent.
posted by ME Association at 10:24 AM
Report of the APPG on ME, 16 November 2006Prepared by the MEA/AfME Secretariat:
A meeting of the APPG, chaired by Des Turner MP, took place on 16 November 2006, in Committee Room 17, House of Commons. It was attended by MPs Ian Gibson, Steve McCabe, Andrew Stunell, Tony Wright and Betty Williams, an observer from NICE, representatives from a number of M.E. organisations, people with M.E. and carers.
The Secretary of State for Work and Pensions, the Rt Hon John Hutton MP, joined the Group, 1.30 - 2pm, to discuss reforms to the benefits and assessments system, including Incapacity Benefit and the draft medical guidance on M.E. / CFS for Disability Living Allowance and Carer's Allowance decision makers.
He described his Department's aim to improve decision-making and to agree a fair and transparent process of decision-making. He stressed that draft guidance was based on received medical advice, acknowledged the difficulties of assessing a fluctuating medical condition and said that achieving consensus was impossible in an area where there is differing medical opinion.
Points raised by MPs and charity representatives related to:
- the strong bias in the guideline towards the psychosocial model of causation and management of M.E./CFS - which is why it is taking so long to reach agreement; problems with doctors who carry out medical examinations;
- why generic guidance for chronic conditions wasn't being used more widely; problems of using computer technology to assess benefit applications; the unacceptability of the new NHS Plus guideline on occupational health aspects of ME/CFS.
Further details will be available in the minutes on the meeting, which will be available in due course.
In the second half of the meeting, Dr Ian Gibson MP was elected as Secretary of the APPG, replacing Steve McCabe MP, who has had to stand down following his appointment as a Whip. Dr Gibson reported that the findings of the inquiry into scientific research on M.E. would be published shortly.
Other APPG office bearers were confirmed as continuing in post.
The meeting closed with discussion of the draft NICE guideline, which was described as skewed and impractical. Points raised by MPs and charity representatives related to:
- cost implications to the NHS of treating everyone with mild to moderate M.E./CFS with a course of CBT and/or GET;
- the legal implications of prescribing exercise therapy.
Dr Turner, as Chair of the APPG, will write to Sir Michael Rawlins, Chairman of NICE, expressing concerns and inviting his or his representative to attend the next meeting of the APPG, sometime in February, before the final guideline is published. Date to be confirmed.
The meeting achieved all its objectives - attendance of the Secretary of State, agreed APPG action on the NICE guideline, and a quorum which enabled the election a new APPG secretary and the confirmation of other appointments from the AGM.
RiME summary of APPG Meeting, 16 November 2006RiME
Campaigning for Research into Myalgic Encephalomyelitis
MPs in attendance: Des Turner, Tony Wright, Andrew Stunell, Ian Gibson, Steve McCabe, Betty Williams and John Hutton. Also in attendance were members of the public and an observer from NICE. The meeting was chaired by Des Turner and was quorate.
First to speak was the secretary of State for work and Pensions, John Hutton. He spoke about benefits and assessments system reforms and about the draft medical guidance on M.E./CFS for Disability Living Allowance and Carer's Allowance decision makers. He explained his Department was trying to improve decision-making and to agree on a fair and transparent process. He said the draft guidance was based on medical advice, and that there are difficulties assessing a medical condition that fluctuated. He also said that achieving consensus was impossible in an area where there is differing medical opinion.
Charles Shepherd (MEA) mentioned how the DWP 'Panel' were now on their 'ninth draft Guidelines' and how polarised views were preventing consensus; the neurologist on the panel, for example, does not accept the ICD listing of ME. Dr Shepherd said that 1,000 PWME pa were having to 'win' their benefit on appeal.
Barbara Robinson (Suffolk) and Doris Jones (Independent Researcher) drew people's attention to an NHS Document entitled 'Occupational Aspects of the Management of CFS'. The document discusses 'pathways to work', leading PWME of working age to fear that the Govt might try to force them into work.
Doris said the Document preempted the NICE Guidelines.
Second item was the confirmation of elected officers. Because of complaints made to the Parliamentary Commissioner by members of the public concerned that the last APPG meeting was held as an AGM, and officers were elected even though the meeting was not quorate, the process was correctly repeated at this meeting with no changes to officers other than the group secretary
Steve McCabe was replaced by Ian Gibson MP. At that point Dr Gibson made an exit for the door. On the way, he talked briefly about his imminent Inquiry, saying how difficult it had been to reach any sort of consensus due to the range and diversity of views.
Third item was a discussion regarding the NICE guidelines for ME/CFS. They have been condemned as unfit for purpose by the ME community. Dr Turner said they were fit for 'neither man nor beast', and the Health Dept would be unwise to try to implement them. Points raised were (1) the aspects of the costs to the NHS of implementing them (2) the risk to sufferers (3) the legal ramifications of prescribing exercise. Paul Davis RiME said the crucial issue, again, was terminology and that based on a 'wide Fukuda, Section 1.2.' what followed was both skewed and irrelevant. The person from NICE did say a few words, but he was at the back of the room and barely audible. Dr Turner said he would write to the Chairman of NICE, Professor Rawlins, to convey concerns raised, and also to invite him to the next APPG meeting.
Doris Jones expressed her concern that the NICE Guidelines were based on the 2005 York review, which is psychiatrically biased. Paul Davis agreed and pointed out that the CMO Report, which had been mentioned a number of times during the course of the meeting, had been largely based on the original York Review 2002. Paul read out sections 46 + 48 of the CMO Report: they associate ME with activity avoidance and abnormal illness beliefs to be combated by GE and CBT respectively; ME patients do not view these recommendations as dissimilar to those in the NICE Guidelines; by signing the misguided CMO Report the ME Charities had put the ME cause on the backfoot, and they were now 'running with the hare and the hounds'.
Finally, at the end of the meeting Paul expressed his concern that discussion of issues such as the NICE Guidelines was deflecting attention away from the issue of research - what PWME primarily want. He asked Dr Turner what he intended to do about it only to receive the same question back. Paul pointed out that he was campaigning for research into ME but didn't have the same powers MPs have at their disposal, and that if 330 MPs thought there should be research into the physical causes of ME, it should happen.
Disclaimer: Due to technical problems, there has been no tape-recording to work from this time. The following is based on scribbled notes made at the meeting. Those who took the notes said there was difficulty in hearing what some people said. We have tried to make the summary as accurate as possible.
After the meeting members of the public were given an A4 sheet of paper. It declared that the APPG on ME does endorse the ICD Classification of ME. It also lists a set of rules under 'Code of Practice for the APPG on ME'.
Although not unsurprising, it is ironic that the public were handed these rules given the fact that the Parliamentary Commissioner recently received a number of complaints asking for the rules governing APPGs to be strengthened, and he refused to do so on the grounds that it would be unduly prescriptive. It waits to be seen how these rules will be enforced, but the fact that this action was taken only serves to strengthen people's dissatisfaction with politicians. It would appear it is deemed unduly prescriptive when the public asks for safeguards to be directed at MPs, but not so if MPs decide - for whatever reason - they want safeguarding from the public. Most of those in attendance at the APPG for ME are in reality either extremely ill with ME, or caring for someone that is. They justifiably feel they have been left with no other choice than to try to address politicians directly.
Ian Mclachlan
Thanks to Ian for above.
News re. RiME newsletter No.8 will follow very shortly.
Paul Davis RiME 10 Carters Hill Close Mottingham SE9 4RS
ALL-PARTY PARLIAMENTARY GROUP ON ME
Chair: Des Turner MP Vice-Chairs: Andrew Stunell MP Tony Wright MP Secretary: Steve McCabe MP Treasurer: David Amess MP
Draft minute of the meeting of the All Party Parliamentary Group on ME held 2.30pm, Thursday 20th July 2006 Committee Room 19, House of Commons
PRESENT Dr Des Turner MP (Chair) Celia Barlow MP Simon Alcock (Office of Ed Miliband MP) Colin Barton (Chairman, Sussex and Kent ME/CFS Society) Paul Davis (RiME) Neil Devlin (North London ME Group) Ciaran Farrell (Person with ME) Douglas Fraser (Person with ME) Christine Harrison (BRAME) Tanya Harrison (BRAME) Aidan Hocking (Office of Ed Miliband MP) Doris Jones (25% Group) Dera Kow (Patient) Ruth Manning Di Newman (Peterborough ME and CFS Group and Cambs Neuro Alliance) Clive Page (Father of person with ME) Augustine Ryan (Person with ME) Dr Charles Shepherd (ME Association) Trish Taylor (Action for ME) Stephen Vaughn (Sussex and Kent ME/CFS Society) Heather Walker (Action for M.E.) Adrian Ward (NICE)
APOLOGIES
Secretary of State for Work and Pensions, the Rt Hon John Hutton MP, Lord Bilston , Paul Burstow MP, Peter Bottomley MP, Graham Brady MP, Russell Brown MP, Tom Clarke MP, Tony Cunningham MP, Nadine Dorries MP, David Drew MP, Bill Etherington MP, Dr Evan Harris MP, Lady Hermon MP, Stephen Hesford MP, Jim Hood MP, Kelvin Hopkins MP, Dr Brian Iddon, Eleanor Laing MP, Julian Lewis MP, Ian Liddell-Grainger, Elfyn Llwyd MP, Peter Luff MP, Ann McKechin MP, Chris Mullin MP, Eddie O'Hara MP, Andrew Stunell MP, Mark Tami MP, Mark Todd MP, Ed Vaizey MP, Ben Wallace MP, Betty Williams MP, Hywel Williams AS/MP, Roger Williams MP, Mike Wood MP, Jeremy Wright MP, Tony Wright MP.
1. WELCOME
Dr Turner welcomed people to the meeting. He passed on the apologies of the Secretary of State for Work and Pensions, John Hutton MP, who had been called to a meeting of the Cabinet.
2. MINUTES OF THE LAST MEETING / MATTERS ARISING
Ciaran Farrell said the minutes did not include a full account of the meeting held 26 April 2006 in the Boothroyd Room, Portcullis House. He circulated proposed amendments, which gave a more detailed note of his comments at that meeting, together with a briefing paper on the issues surrounding the drawing up of a new Disability Handbook entry for CFS/ME, asking if the minutes could be amended to include his additions and/or circulated to MPs not present. The Chair declined, explaining that the minutes were not intended to be a verbatim account and that circulating Mr Farrell's papers at the meeting was sufficient. His ruling was supported by Colin Barton and others round the table.
3. MEDICAL GUIDANCE ON ME/CFS FOR DISABILITY LIVING ALLOWANCE AND CARER'S ALLOWANCE DECISION-MAKERS
i. The Chair asked Dr Charles Shepherd to provide an update on the latest draft of the guidance being prepared by the DWP on ME/CFS for Disability Living Allowance (DLA) and Carer's Allowance decision-makers.
ii. Dr Shepherd described the meeting which had taken place that morning at the DWP, when a Principle Medical Adviser and a member of the Customer and External Relations Directorate at the DWP had met representatives from Action for ME, AYME, BRAME, the ME Association, 25% Group, two physicians and a representative for Professor Puri, to discuss the latest draft (version 8) of the proposed new guidance on DLA and Carer's Allowance. Disappointingly, the Chair, Kim Archer, was ill and unable to attend the meeting and none of the team of doctors who were involved in the drafting process, nor the neurologist who is advising the DWP, were present. All the charities present at the DWP agreed that the latest draft:
a. failed to explain at the onset that the term ME/CFS relates to a variety of clinical presentations, with a range of possible triggers, pathologies, degrees of severity and responses to treatment
b. contained factual errors, inconsistencies and dogmatic statements which were inappropriate
c. showed a significant bias towards the psychosocial model of causation and management along with a failure to properly refer to research that supports an organic basis, neurological research in particular
d. included inappropriate discussion as to whether ME/CFS is a physical or psychological illness (which does not happen in DWP guidance for other conditions)
e. provided inappropriately detailed information on the management of the illness
f. did not include early specialist reports or take into account the views of the person's GP or consultant.
g. failed to reflect that the views of people with ME/CFS, and their physicians, are often very different to the generally positive outcomes for CBT and GET found in clinical trials
h. was completely inadequate in its description of the disability and state of health experienced by people who are severely affected by ME and the way in which this impacts on care and mobility, as evidenced by BRAME.
i. The ME organisations who attended were united in their belief that the guidance should note the neurological nature of ME as recognised by the World Health Organisation, the UK's Chief Medical Officer and, most recently, by Ivan Lewis MP, Parliamentary Under-Secretary of State, Department of Health. The DWP did not feel that this was relevant to decision makers but to qualify for the higher rate mobility component of DLA a person has to have a physical problem.
j. Trish Taylor, Action for ME pointed out that, under the current situation, an unacceptable number of applicants have to go to appeal in order to get the benefits to which they are entitled. She quoted the case of Jo-anne, aged 39, who wrote, "When I became severely affected I applied for DLA and was turned down. I didn't know the system and was too ill to appeal. I tried again 2 years later and was turned down again despite being hospitalised at the time. I employed a welfare rights solicitor and won 14 months later at appeal. I still get DLA but have been turned down 3 times following a medical exam - all 3 times being successful at tribunal." The DWP acknowledged that far too many people were having to go to appeal and said the system was under review.
k. The outcome of the meeting was that the DWP agreed to take comments back to the doctors who are drafting the guidance. The Acting Chair acknowledged that the current draft was a consensus document and that the doctors who had written it were unlikely to make major changes. However, she agreed that there were inaccuracies, inconsistencies and inappropriately dogmatic statements which needed to be changed. The possibility of a further meeting to discuss version 9 was raised but not confirmed.
iii. Dr Turner thanked Dr Shepherd for his update and invited comment.
a. Tanya Harrison, BRAME, said that Dr Nigel Speight, the Consultant Paediatrician who had attended the DWP meeting, believed that consultants were better placed than visiting doctors to decide a functioning scale for people with ME
b. Christine Harrison, BRAME, expressed her appreciation of the DWP for holding meetings about the guidance. BRAME looked forward to the next draft and would continue to fight for better guidance and caution when making reference to potentially harmful and outdated treatments.
c. Di Newman made the point that hard-won diagnoses were often ignored by decision-makers and asked what legal redress there might be for individuals who might suffer if the issues raised about the guidance were not addressed by the final draft.
d. Trish Taylor, Action for M.E., endorsed everything that had been said and highlighted the agreement shared by voluntary organisations about the guidance.
e. Doris Jones and Clive Page said that little seemed to have changed since their son and daughter had first become ill several years ago.
iv. Dr Turner concluded that resolution on sensible guidance for decision makers had not yet been achieved. The guidance needed to reflect the comments of voluntary organisations, medical consultants and clinicians. It should also state that ME is a physical illness with serious effects.
Dr Turner would ask the Secretary of State for Work and Pensions to attend the next APPG to discuss these issues.
Sir Liam Donaldson would be invited to a future APPG to discuss what had changed since 2002, when as Chief Medical Officer he published the report which highlighted the lack of understanding about ME amongst health professionals and the general public, saying ME had been a 'disease in the wilderness' and calling for more research.
4. UPDATE ON THE DEVELOPMENT OF NHS SERVICES FOR ME / CFS
i. Trish Taylor, Action for M.E., reported that Action for M.E. had drafted a briefing report on the situation regarding the new NHS services in England, as requested at the last meeting. Some of the services were under serious threat of closure as funding for them did not appear to be included in the baseline budget controlled by Primary Care Trusts (PCTs).
The paper included quotes of support and concern from a number of patient representatives.
After sending the briefing paper to all members of the APPG and constituency MPs, Action for M.E. had written to the Rt Hon Patricia Hewitt, Secretary of State, about the perilous situation facing some of the new services.
ii. Paul Davis was forcefully critical of the new NHS services, insisting that he had letters of complaint which said their approach was too biased towards the psychological school and that their definition of ME was too broad. He was concerned that financing ME services could distract the government from investing in research and asked if the research and development fund at the Department of Health could be called upon to fund more research.
iii. Tanya Harrison, BRAME, who has severe ME, argued that her NHS ME service had been very beneficial for her.
iv. Trish Taylor said that the centres were still new and developing and that contact with their patient representatives had produced an overwhelmingly positive response. Although some difficulties had been reported, over 80% had adopted multi-disciplinary approaches. Some had been excellent. Overall, the services provided a foundation for future development from inside the NHS.
v. Colin Barton said the services had got off to a good start.
v. [sic] The Chair thanked Trish Taylor for her work and noted that questions had been raised in the House about future funding for ME services. He thought there was scope for the services to contribute to research.
5. AGM
The following MPs are members of the APPG: Dr Des Turner, Anthony Wright, Dr Ian Gibson, Bob Blizzard, Janet Anderson, Liz Blackman, Dr Rudi Vis, Steve McCabe, Chris Mole, Julie Morgan, Peter Luff, Damian Green, Oliver Heald, Henry Bellingham, Laurence Robertson, Andrew Stunell, Bob Russell, Mike Weir, Paul Holmes.
The Office Bearers are: Dr Des Turner MP (Chair), Anthony Wright MP (Vice- Chair), Andrew Stunell (Vice-Chair), David Amess (Treasurer), Steve McCabe (Secretary). The Chair noted that Mr Stunell had agreed to continue in post only because noone else had agreed to be put forward.
6. DATE OF NEXT MEETING
To be confirmed, subject to the availability of the Secretary of State for Work and Pensions. The meeting closed shortly after 3.30pm.
APPG Meeting 20 July 2006: Summary by RiMECampaigning for Research into Myalgic Encephalomyelitis
The main item was the drafting of the DWP Guidelines which are set out in the Disability Handbook. Dr Shepherd reported on the meeting that morning between the DWP and a 'Working Group' (WG) which included representatives from MEA and AfME:
The process had been going on for about a year.
The draft document of Oct. 2005 was totally unacceptable.
Dr Pinching had acted as a mediator between the DWP and the 'ME WG' revision and Draft 8 2006.
The new draft had been viewed by the WG and rejected.
One of the points raised by the WG was whether the DWP accepts the G.93.3 WHO Classification of ME as a neurological disorder. It never got a clear response, the DWP saying 'it's a statistic not a clinical practise matter'. Related to this, the WG feels the DWP Guidelines fail to address the physical effects ME has on a person, especially the severely affected.
Dr Henderson (Medical Advisor to DWP) said she would take the document back to the 'DWP Writing Group' with the WG's comments.
Dr Shepherd felt that although there may be some alterations the overall message will be the same.
Dr Turner (APPG Chair) said the discussion of the DWP Guidelines will continue at the next APPG meeting. Those involved should get their opinions on paper and put them to John Hutton DWP Secretary of State.
Ciaran Farrell expressed concern that the ME Charities were failing to distinguish between the Disability Handbook - it sets out the Guidelines which outline the illness and its effects - and The Decision Makers Guide (DMG), which is used by DWP Adjudication Officers who are now known as Decision Makers and who make decisions within the DWP on claimants' entitlement to benefit. Both can be referred to when making a decision and both need to be revised re. ME's status.
Ciaran pointed out:
(1) That in an early draft of the current revision of the Disability Handbook it stated it was law that CFS/ME has both a physical and a psychological component; this is not true, as this conceptualisation of CFS/ME in DWP arises from the DMG which has the status of internal DWP policy.
(2) That there have been commissioners' decisions favourable to ME; these should serve as case precedents and could be used to revise the DMG and the Disability Handbook to the advantage of PWME.
Ciaran's points are very valid and the fact the ME Charities fail to see their importance is both disturbing and remiss. The Disability Handbook is also used by people such as Disability Employment Advisors who work in Job Centres.
If the ME Charities expect the DWP to acknowledge and accept the WHO Code, why didn't they do the same re. the CMO Report? Because they misguidedly signed up to a report which does not recognise ME to be a physical illness, future efforts to tackle issues such as this will always become an exercise in damage limitation.
The situation is complicated further in that Dr Shepherd is the Medical Director of an organisation (MEA) which has -opathy and not -itis in its title, thus flouting the G93.3 Code.
There are concerns, thus, as to whether the WG is on top of its brief. And it would appear that the ME community might have to resign themselves to another failure - one which could have serious ramifications for us all.
AGM: Since there were only two MPs there (Des Turner and Celia Barlow, both patrons of the Sussex Group,) the meeting and hence the AGM were not quorate. The Group, therefore, would appear to have no constitutionally elected officers and one wonders if it can continue?
NHS Clinics: Trish Taylor AfME reported that funding might run out in some areas.
Paul Davis (RiME) said that the issue to the 'front bench' was not patient perception ie do ME patients want them but funding ie they must be saved. Paul brought people's attention to a dossier he had with him. It contained a selection of 34 letters from around the British Isles which condemned the Clinics. He presented this to the Chair. Primary concerns were:
(1) That the treatment was 'same old, same old ...' - essentially of a psychiatric/ psychcological nature.
(2) That admittance criteria was too broad: people with a whole range of conditions being admitted skewed and misleading results.
Paul said that if MPs thought that ME patients were being 'treated' at the clinics, they could turn off re. biomedical research. When Paul specifically mentioned opposition to the Kent clinics, holding up a copy of the Maidstone Newsletter, the Director of the Sussex Group said, 'There are thousands? (with what - ed?) of patients who are helped by these centres and you do them an injustice ... '
Paul said, 'I don't think so' (Paul was talking from the context of neurological ICD-ME) and pointed out the treatment was still essentially 'Wessely Psychiatry'. Shepherd tried to dismiss this saying Lesley Findlay was involved. This doesn't alter the reality that the treatment described in the relevant leaflet is 'Wessely-Chalder' style. Patients are referred to the King's College website and Chalder's book, Coping with Chronic Fatigue, prefaced by Wessely. Members of the Maidstone Group are boycotting the centres.
Paul went on to ask a question about research in conjunction with the Chair mentioning that the Director of the MRC had addressed the last meeting: 'The MRC is not the only Govt agency to fund medical research; the Health Dept has a Research and Development Fund - had the APPG approached the Health Dept re. this fund being used to research the physical causes of ME'.
Dr Turner's response: things were happening on that front, referring specifically to the Gibson Inquiry. But we don't know at this stage how the Gibson Inquiry will report. If it did recommend that the Govt invest money in ME biomedical research, it has no powers to implement such a recommendation. And is there not every likelihood that the Govt would ignore the recommendation as it has recent patients initiatives on the subject?
The reply given by Dr Turner, together with the poor attendance of the APPG's AGM, raises the question: has Dr Gibson's Group superseded the APPG?
Ian McLachlan
Paul Davis - Thanks to Ian for writing the above.
I am going to limit myself to a few comments re. the clinics:With the exception of one recent communication, we get nothing but complaints about them. The issue which features relentlessly is nomenclature: That because admittance criteria is so broad, patients with a whole range of conditions will attend skewed and inaccurate results ...
One might arrive at a situation where the Govt reports that 60,70% ... of 'CFS/ME' patients are being successfully treated. If so, such misleading results would have a range of consequences. Let's look at two:
1. MPs might well think that since such a high number of 'CFS/ME' patients were being 'treated', is there a need for biomedical research?
2. Attendance of clinics might be connected to benefits. Govt Ministers seem desperate, currently, to get people off ICB and into work, and CBT has been specifically mentioned in that respect. Might one reach a scenario where some ME patients were requested to attend: the penalty if they didn't - their ICB would be capped?
To the few who dogmatically insist that the clinics are helping PWME per se, some say:
a) do they have neurological ICD-ME or understand what it is?
b)have they considered the wider implications for PWME?
Following the July 20 meeting, the Medical Adviser to the MEA and the leader of the Sussex group got on the 'net and accused Ciaran and I of acting aggressively. This was not the case. People who both attended the meeting and have listened to the tape ie Ian rebut the allegations as baseless. That the above would choose to launch these personal attacks is both disappointing and sad. I think it says something about them ...
Rest assured, RiME will not sink to this level and get embroiled in pointless feuds or vendettas.
RiME will stick to the job in hand:
(1) putting info. in the public domain.
(2) representing people with neurological ICD Canadian ME as best it can.
With this in mind, RiME will shortly:
A. Write to Dr Shepherd MEA and Trish Taylor AfME in a detailed way re. their perceived support for the Kent Clinics. These letters will be put in the public domain.
B. Publish 'NHS 'CFS/ME' Centres Condemend Part 4 - another 8 letters, which were in the dossier presented to Dr Turner July 20.
Good Wishes Paul RiME 10 Carters Hill Close Mottingham SE9 4RS
rimexx@tiscali.co.uk
www.erythos.com/RiME APPG on M.E.- Interim report by RiMECampaigning for Research into Myalgic Encephalomyelitis
Hi,
Another meeting has taken place outside Westminster involving the APPG Chair and 'outside parties'. See the below letter for details. RiME has written to the Parliamentary Commissioner Sir Philip Mawer (House of Commons SW1A OAA) with its concerns.
If you share our concerns, please do likewise. And please send us a copy. It is important that collections of letters are banked on these matters. If someone in authority were to say, 'there were few, if any complaints... ' one can then say otherwise. The letter below was drafted by two of RiME's supporters. They say, 'feel free to use it as a guide'.
Good wishes
Paul
``````````````````````
All Party Parliamentary Group on ME (APPG)
Dear Sir Philip,
Concerns were raised at the end of last year about a meeting re. the APPG on ME.
The Chair of the APPG Des Turner MP, Action for ME, the ME Association, and the Sussex/Kent ME Group met outside the Palace of Westminster to discuss a business plan for the APPG involving issues such as supporting the development of the NHS services. You stated 30/1/2006:
... I have now heard Dr Turner's account of the meeting he attended in Sussex about which you expressed concern...
Dr Turner has explained that the meeting was a completely informal one with the local Sussex ME Group... Representatives of AfME and MEA were present and, since they currently provide the secretariat for the APPG, it seemed sensible to take the opportunity to have an informal discussion to set up a program for the Group's first two meetings.
Dr Turner has confirmed his wish that... the APPG should operate in a fair and open manner.
I'm sorry, but I fail to see how a meeting which involves outside interested parties and 'sets up a program for the Group's first two meetings' can be informal. It just doesn't add up. Moreover, this meeting was not a 'one-off'. There has been a further meeting...
Posted by: "Colin Barton"
Fri Sept. 1, 2006 12:44 pm (PST)
There was a meeting today in Brighton between the APPG chairman Des Turner MP and officers from the main national charities Action for ME and The ME Association. The meeting was to discuss the way forward for the parliamentary group and how best they can work in the interests of those with ME/CFS.
It is plain wrong and undemocratic that an APPG should conduct its business this way. All meetings should be held at the Palace of Westminster and be advertised and conducted in the usual way.
Please note each of the private parties who attended the Sept. 1 meeting toe the Govt line and, in turn, support psychiatric/ psychological models of treatment.
Those who subscribe to a different view (the majority with ME, in my opinion) were excluded.
The Maidstone Group, for example, within Sussex/Kent, has condemned the new NHS Centres in Kent, and is boycotting them. Please note, also, that correspondence sent to the APPG expressing opposition to the 'CFS/ME' Clinics is not being answered eg The Chair of RiME presented the APPG Chair at the July 20 APPG meeting with a dossier; it contained 34 letters from people around the UK condemning the Clinics, and a covering letter. There has been no reply.
APPG meetings at Westminster are now open to the public. But one questions the value of the latter's attendance if (1) agendas are prescribed (2) the business is tightly led and dominated by those who were at the recent Brighton meeting. 'Open and fair'? I don't think so.
You said it is up to a Group's officers to see fair play prevails. This is all very well, but if they don't attend meetings or show little, if any, interest, abuses will go unquestioned. Re. the July 20 meeting - the AGM - none of the other four officers attended. The Sept. 1 posting refers to Dr Turner as Chair of the APPG on ME, but on whose authority? The AGM was not quorate (only two MPs turned up) and he was not re-elected. Would you please look into this?
I feel it is up to you Sir Philip to see these abuses are stopped. If necessary, by a tightening of APPG Rules. Could one suggest two new clauses: (1) That all APPG meetings must be held inside the Palace of Westminster (2) That APPG Chairs cannot meet outside the Palace of Westminster with private interest Groups to set business agendas for their particular Group. This could be the thin end of the wedge. What if, next, the Chair of APPGs to do with medical matters accept invitations from pharmaceutical companies to discuss business agendas. Would this be appropriate and in the spirit of democracy?
RiME 10 Carters Hill Close Mottingham SE9 4RS
From RiME Summaries of APPG Meetings 26/4/06 & 10/7/2006
MINUTES OF THE ALL-PARTY PARLIAMENTARY GROUP ON M.E. HELD ON WEDNESDAY 26TH APRIL 2006 IN THE BOOTHROYD ROOM, PORTCULLIS HOUSE
PRESENT
Andrew Stunell MP (in the Chair) Liz Blackman MP Russell Brown MP Dr Julian Lewis MP Peter Luff MP Anthony G Wright MP Professor Colin Blakemore (Chief Executive, Medical Research Council) Sarah Perkins (Programme Manager, MRC) Dawn Duncan (Public Involvement and Consultations Officer, MRC) Adrian Ward (National Institute for Health and Clinical Excellence) Jane Allen (Office of Andrew Stunell MP) Trish Taylor (Chair, Action for ME) Heather Walker (Communication Manager, Action for ME) Dr Charles Shepherd (Medical Adviser, The ME Association) Tony Britton (PR and Communications Adviser, The ME Association) Paul Davis (RiME) Ciaran Farrell (Person with ME) Kate Tompkins (Person with ME, from Reading) Augustine Ryan (Person with ME) Louise Ellis (Group Leader, Manchester ME Society) Colin Barton (Chairman, Sussex and Kent ME/CFS Society) Annette Barclay (Person with ME) Jo Dubiel Martin Sayer (Member, Guildford ME Group) Rosemary Underhill (Member, The ME Association) Di Newman (Peterborough ME and CFS Self-Help Group)
APOLOGIES
David Amess MP Charlotte Atkins MP Rt Hon John Battle MP Michael Connarty MP The meeting started at 10.35am
1. WELCOME
Andrew Stunell welcomed people to the meeting, the first public hearing of the APPG on ME. He passed on the apologies of Des Turner, who was attending a meeting of the Select Committee on Science and Technology. He said members of the public would be welcome to ask questions but should remember that the meeting had to be completed within an hour.
2. MINUTES OF THE MEETING ON 16TH NOVEMBER 2005
These were agreed as a correct record.
3. MATTERS ARISING
(i) Department for Work and Pensions Medical Guidelines - update Charles Shepherd (The ME Association) said that the new medical guidelines used to inform DWP decision-makers when considering Disability Living Allowance claims had now been through eight revisions, and the situation had descended into farce. The latest version still demonstrated that the DWP working group gave more weight to the psychological construct of ME than than its rapidly emerging neurological causes. The ME charities were united in continuing to find the draft guidelines unacceptable.
Tony Wright said the APPG should ask the Minister to attend to listen to the objections. Mr Stunell suggested the Minister be invited to the next meeting. This was agreed.
Paul Davis (RiME), Kate Tompkins and Ciaran Farrell all raised issues relating to the terminology and definitions of the illness, which they said were fundamental to diagnosis and management of the illness, and on the outcome of any research trials. Mr Davis said patient admittance to the clinics was too broad. Ms Tompkins said the definition of ME had got vaguer and vaguer, and that ME had become associated with people who felt a bit tired. Mr Farrell said ME had been reduced to 'a dustbin diagnosis'.
In addition, Mr Farrell said clarity on the subject and removal of the psychiatric paradigm in ME in the negotiations over the DWP medical guidelines would assist inform decision-makers higher up in the chain - at Tribunal and Commissioner level. Dr Shepherd said that these points had been raised with great robustness in the discussions with the DWP.
Mr Wright said the APPG had in the past few years received huge amounts of correspondence from people with ME about their difficulties in obtaining Disability Living Allowance. At heart, they wanted to know why their applications could not be treated like those from people suffering from any other more visible disabilities. This must be recognised in the final guidelines from the DWP.
(ii) The new NHS clinical services for ME/CFS - update Trish Taylor (Action for ME) said the ME charities remained very concerned about the future of the new Local Multi-Disciplinary Teams now the £8.5m ring-fenced funding had ended, and given that it is a time of acute financial uncertainty in the NHS. In some areas, vacant posts in the LMDTs were not being filled. Potentially, 21,000 patients could be seen by the existing services in a full year; she was concerned that the actual numbers of patients seen might be much less.
Mr Wright urged discussion on the subject with the Health Minister. Mr Stunell reminded members that in his constituency the Lottery-funded Stockport ME/CFS service, regarded as a model of excellence, had ended and been replaced with an inferior NHS service. Dr Shepherd pointed to Oxford where not only had the new ME/CFS service not received assurances about its long-term future but the older service at the John Radclffe Infirmary was also under threat.
Mr Stunell asked to be supplied with a list detailing services under threat, which could be forwarded to relevant constituency MPs.
4. PRESENTATION BY PROFESSOR COLIN BLAKEMORE, CHIEF EXECUTIVEE, MEDICAL RESEARCH COUNCIL - THE MRC's RESEARCH STRATEGY FOR ME/CFS
Professor Blakemore thanked the APPG for their invitation to attend the meeting - the MRC's third appearance before the group.
He reminded members that the MRC, like all other UK research councils, operated at arms-length from government with funding by an annual Grant in aid from Parliament via the Office of Science and Innovation, part of the Department of Trade and Industry. It operated according to the Haldane principle that detailed decisions on scientific strategy and research should be taken by the research councils rather than by government. Scientific excellence was the prerequisite for funding.
The MRC spends around £500m a year, and had already spent, in total, £3.5m in the area of CFS/ME, including the PACE and FINE trials - 0.8% of its annual budget. This compared with £2m on addiction, another major health issue causing concern and the subject under discussion at the Select and Technology Committee earlier in the morning, and £10m being spent on research into avian flu - which has the potential to cause a global health disaster if the virus mutates to allow human to human transmission
Professor Blakemore traced the involvement of the MRC with research into CFS/ME to the 2002 Chief Medical Officer's Report, when the CMO asked the MRC to develop a broad strategy for advancing biomedical and health services research on CFS/ME. Following a consultation exercise in July and August 2002 and the establishment of a dedicated Research Advisory Group, the MRC strategy was published in May 2003. This defined a number of important areas for research, as follows: case-definition, understanding symtomatology and new approaches to management.
He acknowledged that there was a shortage of good research in the area and said an illness could often be treated and managed successfully without knowing the cause.
Professor Blakemore said he was aware of the concern expressed in some parts of the ME community that the MRC has not paid sufficient attention to physical causes, but said the concern was misplaced.
MRC issued a Highlight Notice to encourage high-quality applications in the area. So far 24 proposals of relevance to CFS/ME had been received, five of which had been funded. Two of those - PACE and FINE - were clinical trials, which had attracted a great deal of comment by the patient groups. PACE and FINE, both very high quality studies, were at present recruiting participants; the results were expected to be published in 2008. Six of the 24 applications were resubmissions, which are not normally allowed for a year. To aid the CFS/ME field MRC allowed the resubmissions straight away after discussion and further peer review, of which one was funded.
In association with Action for ME, the MRC will be holding a research workshop later this year. Every effort was being made to attract the brightest researchers to the meeting and, in particular, those in related fields who have so far not shown an interest in ME.
In addition, the MRC was supporting the PRIME project funded by the GUS Charitable Trust. This identified the experiences of people affected by ME/CFS, studying them using qualitative research methods and facilitating communication between clinicians and researchers.
Mr Stunell then opened the subject for discussion.
Tony Wright said that, despite the money spent so far on the PACE and FINE trials, no priority appeared to be given to research into physical causes. He asked where was the recognition that ME was a real clinical identity with extremely disabling and debilitating effects?
Dr Julian Lewis said there was great cause for concern that people with full-blown versions of the illness could not be certain they were obtaining accurate diagnosis and appropriate tests while there was still widespread debate about whether they were suffering from a physical syndrome or something that was psychological. He asked when the MRC would research an accurate diagnostic test.
Professor Blakemore said the main criterion was always whether the proposed project was of high enough scientific quality. But budgets were finite: sometimes even top-quality projects could not be funded. He pointed to the developments in the diagnosis of schizophrenia which have taken place in recent years: once it was regarded as one illness, now it is widely considered to be a constellation of different conditions. He also commented that it was by finding ways to treat the illness that lead to greater understanding of the underlying causes.
Paul Davis (RiME) said the PACE and FINE trials were using the Oxford and Fukuda research criteria, which failed to separate out people with full-blown, neurological ME. Professor Blakemore said that it could not invent research proposals - the proposals submitted for consideration used these criteria. Dr Shepherd said that, as was made clear in the CMO Report, there remained an urgent need for research into aetiology and pathogenesis. He urged the MRC to consider a program of commissioned research in these areas.
Professor Blakemore said that using commissioned research as a tool to push forward strategy had not been particularly successful when used by the research councils in the past. There were no guarantees that research of the highest quality would be funded by this method. He hoped the research workshop later this year would produce brain-storming of the highest order and bring in bright, young researchers who would be prepared to submit applications.
Annette Barclay commented that people with ME were having to raise money themselves for biomedical research. Di Newman made a comment about the need for biomarkers.
Andrew Stunell thanked Professor Blakemore and everyone else for attending.
DATE OF THE NEXT MEETING
Mr Stunell said the Secretary of State for Work and Pensions would be invited to talk to the next meeting on the subject of the draft medical guidelines, at a convenient date.
The meeting finished at 11.35am
|
||
| Top ^ | ||
| M.E. Free For All, Bristol, UK © 2004 - 2007 All Rights Reserved. ICT-Consultancy 1Link4IT Ltd |
http://www.meassociation.org.uk/content/view/579/70/
turnerd(at)parliament.uk