Notice from the 25% ME Group issued 23 March 2009
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25% ME Group resigns from Forward ME*
This is to inform the general ME community that the 25 % ME Group has withdrawn its membership from ‘Forward ME’.
Why, well we are no longer going to work with any organisation that supports the NICE Guidelines on ME/CFS, which primarily holds the belief that CBT AND GET will help people with this neurological disease. AfME and AYME have held firmly to their support of the NICE Guidelines and therefore the primary treatments that have caused so many problems for patients with ICD10 ME.
If any charity/organisation really looked ‘INTO’ the eyes of many people with severe ICD10 ME, then they would not have supported the NICE Guidelines or the very treatments that have also devastated many people with ME.
We, as a community of sufferers, truly need to decide who to support.
25% ME GROUP
21 Church Street
Might we expect Invest in ME to follow the 25% ME Group’s lead and also resign from this caucus group?
*Forward ME www.forward-me.org.uk
Forward ME is a caucus group convened, last year, by the Countess of Mar which meets away from the public arena of the APPG on ME. It comprises representatives of selected ME/CFS organisations and a chronic fatigue society, invited to participate by the Countess of Mar who chairs these meetings. RiME was not invited by the Countess of Mar to participate in her group.
See previous posting:
In November 2008, I raised a number of questions with Sir Peter Spencer (CEO Action for M.E.) in which I requested clarification of the current status of the existing ME Alliance. Sir Peter has elected not to address these questions.
According to the ME Association’s magazine “ME Essential” Spring 2009 edition, in an article titled:
“Countess of Mar leads ME/CFS strategy group” page 36
Those invited to take part in “Forward ME” were representatives from AfME, AYME, BRAME, Tymes Trust, Invest in
ME, ReMEmber, and the 25% Group.
The ME Association writes:
“As a result of this initiative there have been no further formal meetings of the ME Alliance – a smaller group consisting of AfME, AYME, MEA and the Tymes Trust. None are planned. Although no decision has been made about the future of the ME Alliance, the likely outcome is that it will cease to function once it is clear that the new wider group has become a permanent fixture.
A date for the next meeting of FORWARD ME has not yet been fixed. Hopefully, the new group will promote effective joint working on a wide range of topical issues.”
It is disturbing that the CEO of Action for M.E. has not been prepared, in four months, to be transparent about the status of the existing ME Alliance and that the ME patient community was not consulted about the future of the existing Alliance, whether it welcomed the setting up of a caucus group by a parliamentarian, what the remit of this new group should be or the basis on which membership of this new group would be extended.
The 3rd meeting of Forward ME is scheduled for 21 April 2009.
Minutes of the first two meetings of Forward ME can be read at: www.forward-me.org.uk