Read the latest (US) National Institute of Neurological Disorders and Stroke [NINDS] Director’s Message from Dr. Walter Koroshetz: Advancing Research on ME/CFS.
A thread for sixteen #MECFS, #LongCovid and related research papers from w/c 27th May 2024.
Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.
URGENT, DUE TODAY! please help Evel! xen is #Indigenous, #trans, #disabled, exhausted, and has a family to support. xen is fundraising for their monthly bills and housing.
This is from posting pretty much solely on #MECFS , #LongCovid and related conditions and to a lesser extent chronic illness in general, which shows it is possible to build up followings on them, in case people either gave up on them or never tried.
I constantly see things like ''if you're not going to protests for this issue, you're part of the problem'' or ''don't call yourself an ally if you don't do XYZ''.
Like, I can barely get out of bed on a good day, the best I can do is share posts on social media, if that's not ''good enough'' for you go fuck yourself.
#FollowFriday I recommend @IrishMECFSAssociation if you are interested in studies and #research about #LongCovid#MECFS etc. They provide international informations.
So my pain level has hit 9, and I stayed there for the past two hours. and my sweet child is pissed and complaining that I am "acting like a whining little bitch"...
The authors emphasise orthostatic changes in cerebral blood flow, electrocortical activity, heart rate variability, or oxygen extraction, among other physiological changes, can occur in the presence of a completely normal blood pressure or heart rate response on head-up tilt table testing
Last Boosted Toot (re the Emerge Recommendations for #MECFS in Australia) - I have posted before on why I haven’t engaged with MECFS specialists in a long time. This report calls for parliament to implement these recommendations, which include updating Australia’s treatment plans to world standards instead of the current 2002 version of treatments, abandoned everywhere. Yep - 2002. Can you think of another illness still being treated in such an outdated way?
please help Evel! xen is #Indigenous, #trans, #disabled, exhausted, and has a family to support. xen is fundraising for their monthly bills and housing. anything helps!
please help Evel! xen is #Indigenous, #trans, #disabled, exhausted, and has a family to support. xen is fundraising for their monthly bills and housing. anything helps!
Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.
He concludes: "Does anyone think that LP or its promoters are remotely serious?"
BBC: #LongCovid course is 'exploiting people', says ex-GB rower
Former Team GB rower Oonagh Cousins was offered a free course of the contested
alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions.
please help Evel! xen is #Indigenous, #trans, #disabled, exhausted, and has a family to support. xen is fundraising for their monthly bills and housing. anything helps!
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The Norwegian Broadcaster NRK has an article about the survey from the European ME Alliance (EMEA) which included 11 000 people from 44 countries. 74% answered they have little to no health care.