“UK Tribunal Orders Disclosure of Clinical Trial Data”

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“Many people with [chronic fatigue syndrome(CFS)] have been attempting to make sense of the seemingly bizarre claims made by the authors of the PACE Trial since its 2011 publication in The Lancet,” Valerie Eliot Smith, A UK Lawyer who suffers from CFS told Retraction Watch. “This judgment represents a defining moment for the community and for the Trial itself, whatever the final outcome of any further appeal.”

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1 COMMENT

  1. Thank you for posting this article. I have had CFS for over 23 years. It is not a mental disorder. It is a real physical illness. Many people seem to get it after having had a viral infection that leaves lasting neurological damage. Mine was caused by central nervous system damage from a very severe bad reaction to a psychiatric drug. Before I got it, I was into bodybuilding, bicycling, and riding horses, exercising heavily almost every day. Now I am physically disabled and can’t exercise at all. Any exercise makes my condition unbearably worse in the short-term, and may cause a severe relapse lasting many years (I know this from experience). I have to be very careful how much I exert myself. If I push myself too hard, I may end up bedridden again. The only thing that helps is sleep and total bed-rest. CBT and GET are very harmful for people who have CFS and are based on the false premise that CFS is psychological and that the physical symptoms are a result of deconditioning. CBT tries to get you to think more positively about your illness. I am not depressed. I am a positive person. Most people with this illness are very optimistic. But having this illness is very depressing. It robs you of a normal life. I want very badly to be able to exercise again and have a normal life, but I physically can’t, any more than a paralyzed person can get up and walk. GET is very bad for CFS. Not only does exercise do more harm, but attempting to do it on a regular basis is disastrous for people with this illness. It does serious long-term damage. A lot of us with severe CFS pushed ourselves too hard when we first got sick when we should have been resting, and we only made it worse. I know when people hear the term Chronic Fatigue Syndrome, they think we are just tired and need to be more active. CFS is not normal tiredness. I’ve been tired. I know the difference. This is like an ongoing extreme overexertion combined with sleep deprivation that is so bad, you physically can’t endure any more. Medical science may not understand yet how it works, but it is a real neurological condition. It is not psychological and does not respond to psychological therapies or exercise therapies.

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