TUESDAY 18 NOVEMBER 2008 at 2.00pm in
THE TELEVISION INTERVIEW ROOM, HOUSE OF
Minutes of the meeting held on 8 October 2008.
Constitution for Forward-ME.
correct recognition of myalgic encephalomyelitis as an organic illness requiring
biomedical research to treat and cure
correct diagnosis of patients
specialised biomedical centres for education/treatment/cures
- Membership should be allowed to all organisations
which agree to the aims and objectives.
Beliefs about ME and CFS
- We must refer to the same name as is used in WHO
ICD-10 G93.3 – ME/CFS Myalgic encephalomyelitis.
It has been commented that the name is not important.
However, we believe we must establish which illness we
are dealing with.
To illustrate the problems of ignoring the name then
imagine participants of this meeting being asked to comment on the illness and
each party using a different name for the illness – it would be somewhat absurd.
Chronic Fatigue is a symptom, not a disease or
So we believe we need to be talking about ME/CFS
(Myalgic Encephalomyelitis) and not chronic fatigue.
In the UK CFS refers to an illness defined by the
Oxford definition (chronic fatigue) which is not the same as the US version of
CFS which was originally created based upon an epidemic in Incline Village.
We believe that opposition to the current NICE
guidelines must form part of the position of the group.
Reasons for rejection of NICE:
i. Action for lobbying for changes to be made to HMG’s proposed reforms to the
The government views on disability are too simplistic
and there needs to be greater understanding on how an illness like ME affects
fluctuates and is unpredictable so it is difficult for people with ME to
adhere to any targets and deadlines demanded by any employment situation.
The welfare reform puts undue stress on people with ME
and patients’ fear of losing benefits affects their health.
People with ME are motivated and want to be productive
but their healthcare needs are not met to allow them to regain their
studies or employment.
Emphasis should be placed on regaining
health rather than returning people to work.
Approach to the APPG Inquiry into NHS services for people with ME.
We have published our views and concerns on the Terms
of Reference for this proposed inquiry (a copy is attached [click
With the judicial review of NICE we don’t believe this
is a sensible proposition to begin whilst the NICE review is being undertaken.
Biomedical Research needs to be made into the following -
- We need to
treat the illness as having distinct subgroups and understand that ME/CFS is
separate from the various fatigue states which have so benefited the psychiatric
lobby and rewarded them with the near totality of available funding.
- Research a
diagnostic test to identify subgroups
into pathogenesis of ME
research on the severely affected.
trials on treatments available now such as antivirals.
of the next meeting.
Earliest would be in the new year.