Feature : Medical Research : Dangers of research into chronic fatigue syndrome Nigel Hawkes BMJ 2011 ; 342 : doi: 10.1136/bmj.d3780 (Published 22 June 2011 ) [ Extract ] [ Full text ] [ PDF ] Who are the real victims ? Linda Crowhurst , Very Severe ME patient Norfolk Because a few people are behaving inappropriately, it does not mean that the real physical needs of people with neurological ME are not a genuine issue. It does not mean there are not valid issues about PACE that are right to be raised. It does not make the findings of the PACE Trial any more valid for people with ME - and it certainly does not negate the ongoing biomedical neglect of patients, which is directly a result of the confusion that the psychiatric lobby has created , regarding the proper treatment of ME, a WHO-classified , serious neurological disease. Nor does it make right the implication that ME is a mental health condition requiring therapy as treatment. Peter White , the lead investigator o
Sensory signals are amplified and modified by several mechanisms. Something is terribly wrong in sensory processing in ME patients. We need to find the “broken” mechanism. It could be an autoimmune attack on ..??? We need more research!!!
ReplyDeletehttp://followmeindenmark.blogspot.dk/2013/09/transducer-and-amplifier-in-mecfsmcspain.html Sincerely Helle Nielsen
There is knowledge from other diseases that could help us understand ME, and give us ideas for new research: "Hyperacusis in patients with complex regional pain syndrome related dystonia" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2095603/ and this quote "The sensory abnormalities may include a sudden increase in sensitivity to light, noises, smells, tastes or textures of foods or items of clothing.." from "DOPAMINE (post-streptococcal) related autoimmune encephalitis" http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf Helle Nielsen
ReplyDeleteSorry. forgot this one: Vestibular Hyperacusis. Are you sensitive to certain sounds? http://vestibular.org/vestibular-hyperacusis Regards Helle
ReplyDeleteHas she ever been tested for Lyme Disease? A lot of ME patients are finding they have Borellia infections.
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