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@MEawareness
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#MyalgicEncephalomyelitis(M.E) sufferer. I had a virus & didnt recover. Are questions usually rhetorical? I cannot give blood: https://t.co/tU1sspbOiU
UK
Joined July 2011
#MEcfs few psychiatrists hijacked illness, claimed treated by CBT & GET, enlisted CMO at DWP, got £5mn for 'definitive trial', found no evidence, changed analysis, claimed success, used Lancet & SMC smear patient critics, spent £100sK hide data, proper analysis found no evidence
@SpencerHakimian All of these that turned out to be true here in the UK Initially labelled far fetched conspiracies. Only decades later found to be completely true. - Tainted blood plasma - Thalidomide - Aberfan - BSE - PPE VIP lane - Partygate - Ground rent - Cladding - Dodgy concrete for
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Be sure to register! Agenda coming out soon
Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: https://t.co/QMlULV0d23 See photo below:
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There is no threshold for exertion under which a patient with PEM experiences normal exercise physiology. It is a lie rooted in ableism and toxic workout culture. The science is clear - any amount of exertion causes muscle, mitochondrial, and neurological dysfunction.
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“If somebody wanders into an emergency department with their arm lopped off, you don’t walk up to them and say, gee, you seem upset about this arm being lopped off, should we set up an appointment with a psychologist so you can talk about it? No, you address the missing arm,
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I’m excited to share the first part of an absolutely stunning analysis from the GPT-5 thinking model! I uploaded a huge spreadsheet, nearly 1,300 metabolites (lipids, carbohydrates, microbiome-derived compounds, and much more) measured in 150 ME/CFS patients and 100 healthy
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This meta-analysis from a Lancet journal promotes exercise for Long COVID, although most of the trials included are at high risk of bias and quality of evidence for 84% of the outcomes were of either low or very low quality. https://t.co/QXmxY89aC1
virology.ws
By David Tuller, DrPH Added: On X, @mecfsskeptic has posted a very useful thread explaining how loosely the investigators applied the meaning of "Long ...
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Neurologist here and I am so done with this. “Teaching your brain and body new ways of doing things” is not why you recovered. You were lucky to get back on track. Media, stop misleading people and show kids like ours @ErinAPN1 @Swiftsswallows @Anon61152358473 who are bedbound
New Zealand former TV reporter Joy Reid says she’s about 90% recovered after a 2½ year battle with long Covid. Through gradual rehab and brain-body retraining, she’s regained a fulfilling life but can’t yet return to journalism. https://t.co/N7vdCGmdq4
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The “psychologisation” of ME/#CFS has been part of the problem as we’ve said before and, sadly, will keep having to say. As a psychologist, it’s especially important to be clear and amplify: every year, science confirms more — this is a biological illness.
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These words are from Ziyad Al-Aly’s speech at #KeystoneSymposia. I wish I could edit @ngklimas ‘s video so it plays right after Al-Aly’s speech, when she says “o-oo here we go again,” but the symposium cannot be shared. So please read Al-Aly’s words first, then watch Nancy
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Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: https://t.co/QMlULV0d23 See photo below:
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In case this was missed by some : The @DecodeMEstudy identified PRDX6 as a Tier 1 Gene. #AI suggests that this gene may have a central role to the pathology of #MECFS. And it is directly related with Phosphatidylcholine ! cc : @tamararivc
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....and from 1978...
🔬New @BhupeshPrusty paper breakdown - very cool paper: The study finds that people with ME/CFS & Long COVID have antibodies in their blood that may directly interfere with mitochondria (how human cells create energy and regulate inflammation) In simple language all findings 🧵
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1) A thread for people worrying that the DecodeME effect sizes are too small… In an interview with David Tuller, Prof. Chris Ponting pointed out that "just because the human genetics gives a small effect size, does not predict the effect size of an intervention like a drug."
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Together we’ve marked a turning point, and on behalf of the DecodeME team - thank you 🙏
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Got a question about our results? Our FAQs page has more information about our initial genetic results and what they mean for people with ME/CFS: https://t.co/TLUqsYc0XT . You can also join our webinar on Thursday where there will be a Q&A session: https://t.co/Hw86A8k4hs
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The latest paper from the Cornell ME/CFS Center is in PNAS today. RNA released into the blood differs in cases vs sedentary controls, who can be distinguished at 77% accuracy. Biological network analysis shows dysfunction of the immune system in ME/CFS, as in other assays.
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US press release: Researchers identify key biomarkers for chronic fatigue syndrome https://t.co/3Y61Jyzbr7
#MEcfs #CFS
The latest paper from the Cornell ME/CFS Center is in PNAS today. RNA released into the blood differs in cases vs sedentary controls, who can be distinguished at 77% accuracy. Biological network analysis shows dysfunction of the immune system in ME/CFS, as in other assays.
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1) Study finds healthy lab-grown muscle exposed to ME/CFS or Long COVID blood quickly loses strength, temporarily boosts metabolism, then undergoes mitochondrial and structural collapse with prolonged exposure. Distinct metabolic and structural differences separate ME from LC.
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Study Shows that Mitochondrial Dysfunction in Long COVID and ME/CFS is a CONSEQUENCE or EFFECT. and the ROOT CAUSE is at the Vascular Level, which can be transmitted through the blood: https://t.co/hFnRW3HbOU Findings support our statements from years ago: https://t.co/9J0OTs8Ka4
ME/CFS,FM: MITOCHONDRIAL DYSFUNCTION IN DISEASES PRESENTING CHRONIC FATIGUE AND BRAIN FOG IS ASSOCIATED WITH CELLULAR HYPOXIA, HYPOPERFUSION, ENDOTHELIAL DYSFUNCTION AND PERSISTENT CLOTS. https://t.co/z5QdUJLG6m Analysis of Venous Blood Gases, Lactate and D-Dimer is recommended
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A very moving, sad and beautiful video about severe ME from my friend @AnilvanderZee. He posted it to mark the awareness day for severe ME, which was on Aug 8th.
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