• A Lobby of the APPG
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A Lobby of the APPG : A Need of Accountability and a Firm Resolution

PERMISSION TO REPOST

Following the events of the APPG meeting of July 12th, and the official minutes that followed, it has become clear that there is a high amount of dissatisfaction with or objection to the approaches of the majority of the NHS 'CFS/ME' clinics amongst the ME/CFS community, and that this fact was not properly recognised at the APPG meeting for a number of reasons.

If the objections of people to these clinics are prevented from being aired and formally acknowledged, the current situation, by which the only 'treatments' being offered by the clinics are those psycho-social in nature, with serious physiological impairments being trivialised and/or ignored, is likely to become more and more entrenched as 'best practice', with disastrous results for the community on an individual and collective basis.

It is therefore vital that people register their objections to this state of affairs now, if they have them.

With this in mind, it is proposed that a formal statement is delivered to the APPG, both as written communication to the chair, and as an oral statement read out at the next APPG meeting under 'Any Other Business', in which people have the opportunity to become co-signatories to the statement.

The statement will be as follows:

STATEMENT TO THE APPG: "We are a group of individual people suffering from or closely connected to someone suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome; an illness classified as neurological by the World Health Organisations ICD-10 under code G93.3.

We advise the APPG today of the following:

From the evidence available, it has become apparent that the majority of NHS 'CFS/ME' clinics do not adopt a suitably biomedical approach towards M.E. sufferers. Instead, these clinics inappropriately focus on a Cognitive Behavioural Therapy approach, some combined with Graded Exercise Therapy approaches, neither of which has been shown to be effective treatments for M.E. sufferers, and for which there is evidence of potential risk to patients from both treatments.

We advise you that, by not focusing on a biomedical approach to diagnosis and treatment/support, and by focusing on controversial psycho-social treatments, such clinics are causing M.E. sufferers to be put at risk, both physically and psychologically.

We therefore feel the approaches of these clinics are inappropriate for M.E patients.

In addition we remind the APPG of its duty to safeguard the interest of ME sufferers, and ask that it immediately clarifies its ambiguous position of supporting the setting up and continuation of the CFS/ME clinics - especially as that support is also being given on the extremely vague pretext that they are "a base to build from", despite all evidence to the contrary. We also remind the APPG that their remit is to support, only the WHO code G93.3 of ME/CFS, and therefore believe an unequivocal position of insistence on only a biomedical approach should have been taken from the outset.

We trust that the APPG will now acknowledge that there are, within the ME/CFS community, serious concerns about and objections to the approaches of the majority of the NHS 'CFS/ME' clinics, and have this formally entered in the minutes."

STATEMENT ENDS

Unlike other petitions that might be more generalised, this is a single issue campaign.

The bottom line is, if, from the evidence available, you have come to the conclusion that THE MAJORITY of NHS 'CFS/ME' clinics are inappropriately focusing on a psycho-social CBT/GET approach, and LACKING in a very necessary biomedical approach to the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome WHO ICD 10 393.3, and you wish to register your objection to this situation formally to the APPG, then by putting your name as co-signatory to this statement, you are registering your objection to this situation only.

The purpose of this statement is to ensure that the APPG formally recognise that there are many people who DO object to the current approach of the majority of the NHS clinics, a situation implicitly denied in the minutes of the APPG meeting of July 12th, and are formally reminded of their duties to safeguard the interests of ME/CFS sufferers, in acknowledging the objections formally.

Your agreement or disagreement with other people (including this campaign's co-ordinators) on other issues is not at stake here. Becoming a signatory to the above statement in no way implies agreement with any other campaign of any other co-signatory or co-ordinator.

If you become a co-signatory to this letter, your full name will be listed at the bottom of the statement delivered to the Chair and other members of the APPG. Your name will not be read out at the APPG meeting, although the amount of co-signatories will be stated at this meeting.

To become a co-signatory to this letter, please email either of the persons below, as soon as possible, advising of your willingness to become a co-signatory to the statement as above. It is intended to deliver this statement to Des Turner, Chair of the APPG before the next APPG meeting in November 2007.

Angela Kennedy angela.kennedy@virgin.net

Ian McLachlan im012c1136_4@blueyonder.co.uk

19th August 2007.

Re: A need of Accountability and a Firm Resolution

PERMISSION TO REPOST

We are sorry that we are not able to contact you all individually but we are pleased to inform you that the statement you agreed to co-sign was read out at the APPG meeting held on the 22nd of January.

Although it came as somewhat of a surprise and was rather perplexing to many, Dr Gibson (who chaired the meeting

in place of Dr Turner) decided to ask for a vote to be taken as to whether the statement be entered into the minutes. Although there were some abstentions the statement was supported by a show of 14 hands to 0, and will be included.

We are delighted that the faith shown by you for this initiative did achieve its objective.

Since this meeting took place, Dr Gibson has announced his intention to look at other types of forums that he feels may be helpful to the ME cause. One such forum suggested would be for the current APPG to reregister as an Associate

group. This would allow people other than Parliamentarians full membership.

It is to be welcomed that politicians are appearing to take an interest but we feel the underlying lack of faith the ME community currently has in them will always remain unless the forum created allows the individual voice of sufferers

to be heard. We need to see a clear indication from politicians that they are willing to listen to a cross section of views, not just a continuation of the last ten years in which they have constantly submitted themselves to an unquestioning belief in the divine right of charities. They have been the only representative voice in which they have been prepared to tolerate.

It therefore remains to be seen, as to whether we will ever have a group that will allow itself to be fully accountable, and resolute enough to effectively highlight our desperate plight in a way that will motivate MP's to act together to deliver much needed funding for biomedical research.

Angela Kennedy

Ian McLachlan