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.
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"...
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 Can you think of another illness still being treated in such an outdated way?
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.
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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.
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!
(UK)
"Government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit"
A thread for twelve #MECFS, #LongCovid and related research papers from w/c 20th 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.
Arvo, Toots. Having a slow one today - all of us feeling the colder weather, and feeling it in our bones. #Wonderdog is booked in to see her vet later in the week, for a refill of her arthritis medicine; partner has retreated for a nap. I am reflecting on a discussion I had last night with an old friend who still thinks that #MECFS can be managed with “routine,” and maaate. I’ve lived with this since 1992, that’s 32 years now. You think there’s anything I haven’t TRIED?!
"Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS."
Researchers from the Quadram Institute and University of East Anglia are testing the feasibility of red light therapy for people with ME. This pilot study, called Light ME Up, is being supported by the charity Invest in ME Research @invest_in_me_research
"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.
The survey will be open from 5/24/2024 to 6/23/2024."
Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.