Think about this for a moment- how difficult do you think it might be to maintain any kind of hope, if you were seriously physically ill, with multi- system dysfunction, for decades on end, yet you had no way of finding out what is going so fundamentally wrong, physiologically, in your body ? How would it be if you were not taken seriously by main-stream medicine or even if you were, the answers were still not forthcoming? What if your horrendous physical illness was consistently misinterpreted as just unexplained fatigue without any underlying pathology? What if you were harmed, sometimes for years or forever, by any and every intervention tried, because the physiological insight pertinent to your illness,is missing, so it cannot be taken into account? What if you were left to “just get on with it”, in the most intense, disabling, horrendous pain and agony, becoming more and more isolated and invisible? What if it was safer for you to not engage with people than to ...
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.
ReplyDelete