• Petition - Hypothyroidism in Wales - Petition
• Action for M.E. - focus group for website needed
• R.E.S.C.I.N.D.
• Benefits Petition
• Campaigning for Research into ME (RiME)
• Traumatic Hospital Treatment of a patient with M.E.
• A Lobby of the APPG: A need of Accountability and a Firm Resolution
• Saying "No" can be positive.
• Click here to fund research

We call upon the National Assembly for Wales to investigate the non-diagnosis and mismanagement of hypothyroidism in Wales with a view to producing recommendations to rectify this situation.

Further Information (provided by the Petitioner)

It is felt that the current method of diagnosis and management of hypothyroidism, which is dependent on the interpretation of blood tests, [whilst often ignoring the signs and symptoms of hypothyroidism], is flawed and has led to a failure to diagnose and/or adequately treat this debilitating condition in many thousands of patients, rendering many of them profoundly disabled. In addition, many patients are being denied alternatives to thyroxine even when this is merited. The non-diagnosis and mismanagement of hypothyroidism is not only catastrophic for the patients concerned but is a financial drain on the Welsh economy, the NHS, the Benefits Systems and Social Services Systems throughout Wales.

Click title to sign petition.

We are at the initial planning stages of developing a new website.  We would like to invite people who are affected  by M.E., who live near Bristol, to take part in a small focus group to hear your views.

We'd like a range of people of different ages and technical abilities to take part, especially people who are new to using websites or not very confident, as well as more experienced web users.

The focus group will take place on Wednesday 27th August in central Bristol.  We will provide lunch from 12  - 1 and the session will be from 1pm - 3.30pm.  Travel expenses will be paid.   If you would like to attend or require more information please contact me on 0117 9301322 or email kimberley.hogarth@afme.org.uk by Wednesday 20th August (please note I will not be in the office between 11th - 19th Aug but will respond to you as soon as I return).
 
Many thanks
Kimberley

Kimberley Hogarth
Press & Communications Officer
Action for M.E
Direct line: 0117 930 1322

Action for M.E. is the leading charity dedicated to improving the lives of people affected by M.E.
PO Box 2778, Bristol, BS1 9DJ, Main number: 0117 927 9551

www.afme.org.uk

Petition for the Recognition of

Myalgic Encephalomyelitis

"While efforts on renaming the disease known as Chronic Fatigue Syndrome (CFS) continue to stagnate, an alternative course of action is to simply recognize in the United States the disease already internationally known as Myalgic Encephalomyelitis (ME).

The name Chronic Fatigue Syndrome has proven to be detrimental. We deserve an established, legitimate diagnosis that can be properly diagnosed, researched and treated in order to end the medical and social abuses to which we have been subjected for far too long.

To Read more click here and please sign.

We are "Tired of being sick, not sick of being tired."

Tom Hennessy, President

RESCIND Inc.

Jill McLaughlin, Former Executive Director

National CFIDS Foundation, Inc.

petitions.pm.gov.uk/DLA-genuine/

"We the undersigned petition the Prime Minister to protect & help people recieving DLA who are having to reapply due to Government changes in how this benefit is allocated."

"People who are genuinely chronically ill/disabled & have been recieving DLA/SDA are having to do battle with their local DHS/GP's etc to reapply/appeal to have their allowances re-instated.This is causing untold stress, distress & adding to their illnessess & no doubt will cause ultimately some poor souls death.

HOW DOES THE GOVERMENT INTEND TO LOOK AFTER THESE VULNERABLE PEOPLE IN OUR SOCIETY?"

Closing Date: 21 February 2009

The above has been prepared and is ready to go to all 646 MPs. The top part of the page presents a few facts about ME and the current state of biomedical research in the UK. Then, lower down the page, MPs are invited to declare whether or not they think the British Government should be funding research into the underlying physical causes and disease process of ME.

In order to save on postage, the letters were going to be hand delivered to the House of Commons. However, shortly before Easter I learned that there would be a handling charge of 24p on each letter - meaning a total cost of around £160.

Having reflected on the matter, I have decided I will probably post the letters and, accordingly, put out a stamp appeal. I feel the best way of doing this is to ask people to pledge x number of 2nd Class stamps via email. If the greater number of stamps are pledged, I will then ask for the stamps in and the project will proceed.

Please help.

Best Wishes

Paul Davis

10 Carters Hill Close

Mottingham

London SE9 4RS

rimexx@tiscali.co.uk

www.erythos.com/RiME

NB I have considered doing this over the internet but decided against (1) I think one is likely to get a better response doing it through the post (2) I don't think it would mean any less work; it would involve keying in (and then deleting) 646 email addresses; I don't have a secretary to help.

ME Free For All.org supports this great initiative from RiME and suggests that you follow our example of putting as many 2nd class stamps as you can afford in an envelope and sending them to Paul. We are sure that he will achieve the target but he is always able to use stamps wisely, so be generous.

Read about the treatment of one severe M.E. sufferer, in a locked psychiatric unit, in an open letter from Catherine Ashenfelter of The Grace Charity for M.E.

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 'Chronic Fatique Syndrome / Myalgic Encephalopathy (CFS/ME)' clinics amongst the CFS/ME community, and that this fact was not properly recognised at the APPG meeting for a number of reasons ........ For more details and how to become a co-signatory, click A Lobby of the APPG.

Catherine Ashenfelter of The Grace Charity For M.E. would like you to complete this survey about any treatments that may have been helpful, or that may have had any bad side effects. While there, you are invited to download a useful document, "Saying No can be positive", warning against Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET).

Von Jones from ME Chat reminds us how much we can raise for M.E. research funds by using the search engine Everyclick. So far £2146.84 has been raised for ME Research UK (biomedical research into ME) just from clicking. Everyclick is a search engine (like Google) but gives 50% of its profits to charities according to the number of clicks the charity supporters make.

As Everyclick becomes more well known, MERUK is competing with more charities for the available funds so needs as many supporters as possible. If you haven’t joined already, please go to www.everyclick.com/uk/meresearchuk. Make it your home page so your clicks will benefit ME Research UK, click on the icon to become a supporter and do some clicks each day. It will say at the top 'Your selected charity is ME Research UK ' and if you click on the charity name it will show you the total number of clicks, number of supporters and amount raised so far.

Please spread the word among all your friends and relations. Von says: "I made it my signature on every e-mail because some friends said they needed reminding, and I make Everyclick my first port of call for searches and also click daily on the various news headlines. The average number of clicks per supporter per day is less than 2 so just 2 extra clicks would make a big difference."