Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
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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