SEVERE ME UNDERSTANDING AND REMEMBRANCE DAY Aug 8th We were asked by ME Group Australia to write an article on finding Hope in this place of endless, severe suffering: You Are Precious And Your Presence Matters, a Reflection on Hope. Greg and Linda Crowhurst When you are diagnosed with Severe/Very Severe ME, hope is an ephemeral, delicate thing. If you hope to be immediately better, or return to your previous life, those hopes will, most likely, be dashed, if the diagnosis is correct. When I was asked to write this article for ME Group Australia, I asked Linda, my wife, what hope means to her. She commented : “Hope for me cannot be about anything specific, unless that specific thing is actually achievable, or potentially achievable or possibly achievable at some point in time, even if it feels unlikely . For me hope comes in small things, not big things. Hope of a better moment, hope to not be irritated, hope to not be distressed, hope not to be tormented in every single mome...
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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