“Action for M.E., the country’s biggest M.E. charity, supports the guideline.”
Ed: Action for M.E. has around 9,000 members. Many of the estimated 250,000 ME sufferers in the UK lost confidence in Action for M.E. years ago and have terminated their memberships; this is reflected in falling membership figures. They have become disillusioned with the way in which Action for M.E. operates, with its lack of transparency and are critical of the charity’s relationship with government and with bodies such as NICE and the MRC. They do not believe that Action for M.E. properly represents their needs as sufferers of a disabling and debilitating illness.
Membership of this patient organisation carries with it no voting rights and therefore no ability to participate in trustee election processes; no ability to put oneself forward for election as a trustee through a ballot of the membership at an AGM, or to nominate others to stand for election in AGM elections; no rights to attend AGMs or EGMs held by Action for M.E. and no rights to make proposals at AGMs or to call for an EGM. Although Action for M.E. issues occasional invitations for expressions of interest from prospective trustees, via its magazine, trustees are selected by the existing trustees, not via a ballot of the membership through a democratic election process.
So although Action for M.E. claims on its website that “…our direction and policies are informed by the voices of people with M.E.” it is only those voices to which Action for M.E. chooses to listen, since the membership, itself, plays no part whatsoever in the selection of its trustees who “…guide, advise and support the Chief Executive to implement the charity’s strategy”.
When Action for M.E.’s members become disillusioned with the organisation’s policies, with its lack of transparency and with its general view of ME as a biopsychosocial condition as opposed to a physical neurological disease, as defined by the World Health Organisation and that it continually fails to represent their best interests, they are disenfranchised from influencing its governance, its policies and its direction because they have no vote. All they can do is vote with their feet.
The MS Society is the UK’s largest charity for people affected by multiple sclerosis (MS) – an estimated 85,000 people in the UK. The MS Society has over 46,000 members . Action for M.E. should be asking itself why?
Action for M.E. did not consult its membership over its position on the NICE High Court challenge.
For further information see the ONE CLICK AfME Dossier: The ONE CLICK AfME Dossier
 Source: MS Society http://www.mssociety.org.uk/
Action for M.E.
High Court challenge against NICE is dismissed | 13 March 2009
Today, the judge ruled in favour of the National Institute for Health and Clinical Excellence (NICE) regarding its guideline on the diagnosis and management of M.E. (Myalgic Encephalomyelitis/ Encephalopathy) and chronic fatigue syndrome.
Action for M.E., the country’s biggest M.E. charity, supports the guideline.
The guideline was challenged in a judicial review at the Royal Courts of Justice, The Strand, London, 11-12 February 2009.
The case generated considerable interest among the 250,000 people in the UK who have M.E., as some patients hoped the legal proceedings would lead to the withdrawal of the guideline.
CEO Sir Peter Spencer says:
“We understand and respect the arguments brought by Kevin Short, from Norfolk, and Douglas Fraser, from London, who have M.E., but overall we think the NICE guideline represents an opportunity to drive forward the improvement of services for people with M.E. most of whom obtain their treatment from the NHS.
“Yes, we are concerned by the emphasis on graded exercise therapy (GET) and cognitive behaviour therapy (CBT). Our latest health survey showed 34% of patients who had received GET in the past three years felt worse after treatment. The randomised controlled trials which are cited by NICE are given too much emphasis in view of their limitations.
“I would therefore refute today’s NICE statement by Professor Littlejohns that the NICE guideline is “the gold standard for best practice in managing CFS/M.E.”.
“At present there is no “gold standard”. That is why so many patients are angry and upset. That is why we continue to campaign vigorously for more scientific research into this illness.
“Nevertheless we believe that there are other aspects of the NICE guideline which could bring considerable benefits, as long as there is adequate funding for its implementation, especially in terms of training health care professionals to understand M.E./CFS better.
“We are all aiming to achieve the same end result which is better treatment for all M.E. patients. However the route which Action for M.E. will take to bring this about will be to engage with the normal NICE review process.
“The one thing that patients, doctors and NICE all agree is that far more scientific research is needed into the disease mechanisms of M.E.”
Action for M.E. works with the NHS as a critical partner, lobbying for more M.E. specialists and improved quality of treatment for M.E. patients. The charity also offers telephone support and a range of helpful publications.
Further information to follow as more details emerge.
Judicial review website by people opposed to the NICE guidelines http://www.nicemecourt.co.uk/index.html
NICE statement about High Court ruling