Sponsored by: Caroline Davis, Patient
What is this petition about?
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 UK 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 getting 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 stopped funding psychological research into ME.
In January, the MRC announced £1.5m 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 its 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 of 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.