- Closing Date 30 August 2011
In January the Medical Research Council, the body which disburses UK
taxpayer funds for medical research, announced =A31.5m of ring-fenced bud=
get
for research into ME/CFS. Applications for this funding were submitted in
June, and the MRC is due to announce its decisions in November 2011.
In over 30 years the MRC has not funded any significant biomedical
research into ME/CFS, yet it has consistently awarded funding to
behavioural/psychological studies, including the widely discredited PACE
Trial which cost taxpayers =A34m ($6.6m).
The MRC has mandated conditions on applications for the =A31.5m, includin=
g
that they should focus on particular symptoms of CFS/ME such as sleep
disturbance, and include at least one scientist who has won MRC funding
before. These conditions mean it will be very easy for the MRC to slide
back into simply funding more behavioural studies.
This petition calls upon the MRC to commit all of the promised =A31.5m
funding to biomedical studies.
Because so many countries follow the UK=92s lead in research and treatmen=
t
policy, signatures are requested from all countries. You do not need to b=
e
a British citizen or resident to sign.
The short title is: NO MORE psychiatric research into ME/CFS
The e-petition detail is:
ME (myalgic encephalomyelitis) or, as the media and many doctors term it
'Chronic Fatigue Syndrome' (CFS), is a complex neurological condition
leading to severe disability in many cases. About 250,000 people in the U=
K
have this condition; up to 4 million in the USA and as many as 17 million
worldwide.
Why are we petitioning?
For 30 years, the UK and American research establishments have either
refused to fund research into ME/CFS in any meaningful way, or
consistently funded research by psychiatrists who believe that ME/CFS has
a 'biopsychosocial' basis (ie that it is psychosomatic, or all in our
heads) the same thing they used to tell patients with diabetes and MS.
As any ME patient can tell you, you only have to spend a week with this
condition to know it is not imaginary. Some patients have lived for more
than 30 years severely disabled, unable to move, speak, think clearly and
participate in any of the activities that make life worthwhile. Nobody
would want to live this life, because a life with ME is no life at all.
Despite monopolising Government research budgets, the psychiatrists have
failed to prove that ME is a psychological (or 'biopsychosocial')
condition, or that their suggested treatments are effective.
Worse, ME/CFS has become a dustbin diagnosis for patients with all kinds
of illnesses where chronic fatigue is one of the symptoms. This means
that, not only are real ME patients not getting research funding for
causes and treatments, but those who are wrongly diagnosed are not gettin=
g
appropriate treatment either.
What needs to happen?
While the UK and USA Governments, research and medical establishments
continue to ignore the problem, scientists around the world have produced
some 4,000 peer-reviewed, published scientific papers which show clearly
that there are systemic, biological changes in the bodies of ME/CFS
patients. This is the research direction that is most likely to lead to
finding a cause - and a cure.
Who are we petitioning, and what do we want?
So far, every study funded by Britain's Medical Research Council (MRC)
into this condition has had a psychiatic basis. It is time the MRC stoppe=
d
funding psychological research into ME.
In January, the MRC announced %uFFFD1.5m funding for research into the
causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).
Applications for funding must be made this June, and the MRC will make it=
s
decisions on which proposals to fund in November 2011.
It is important that ALL of this funding is focused on biomedical
research. It must not be wasted going over old ground or down any more
blind alleys. It must capitalise on the work already done by such eminent
scientists and physicians as Dr Jose Montoya of Stanford University, Dr
Judy Mikovits of the WPI, Dr Harvey Alter at the NIH, Dr Nancy Klimas of
the University of Miami, Dr Gwen Kennedy and her team at the University o=
f
Dundee and many others.
250,000 patients in Britain need to know they are no longer being ignored=
,
sidelined or labelled as psychiatric cases. They need answers; they need
treatments and they need them without any further delays.
The closing date is: 30 August 2011.
The target is more than 1,000 signatures, but the more signatures we have=
,
the more powerful the petition. Please do sign and encourage others to
sign by forwarding the link: http://bit.ly/Research4ME as widely as
possible.
Thank you
Caroline Davis
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