#NIHMECFSTelebriefing
Walter J. Koroshetz highlights a sensitive topic: there is a lack of research on autopsy samples.
He mentions the NIH Neuro biobank and that people can sign up to donate their tissue (post death).
#MEcfs #CFS #MyalgicE
Conversation
please confirm if is the post-mortem biobank? I'm sure you are aware that most #PwME are undiagnosed a/o misdiagnosed and that the majority of MDs are not familiar with the '15 IOM diagnostic algorithm yet = low organ donations.
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Hoping the center of excellence could house this initiative of collections tissue and whatever they need (gut tissue/heart/ brain etc) it would make sense. Maybe that could become an advocacy initiative or talk to key centers?
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I don't think they do tissue just brain. Or did I hear wrong. I was hoping advocacy could get our center of excellence develop a program for #pwme to donate whatever is needed for this disease (gut tissue/heart, etc) and have set up prior to dying
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Are we kidding ... ⁉️
NIH-->After yr dead #pwme
We can use yr tissues
2 investigate #MyalgicEncephalomyelitis.
This is beyond
INsanity.
AND
NOthing I see to celebrate.
#SevereME
#MyalgicE
Is this what is offered to AIDS,
Cancer, Parkinson's, MS patients.
THIS is
INsanity ‼️
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i remember a while back, the widow of an ex mp who actually die of ME years ago, was approached by the authorities and told to keep quiet about her husbands autopsy results. i wish i could remeber the names now, but i was v shocked at her revealing this via net.




