Post Viral ME/CFS
@PostViralCFSWe are in need of prognostic markers & therapeutic targets for ME/CFS
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This is as bad as saying: “What’s the danger of eating one small piece of nutritious peanut? I will tell you as a neurologist there is none” See how ignorant it is, & how being a neurologist counts for nothing when someone is ignorant? Might as well ask a plumber to treat us.
Many individuals with #POTS are often misdiagnosed as having anxiety or panic disorder. Read the study finding that POTS patients are no more likely to have anxiety than the general population: pmc.ncbi.nlm.nih.gov/articles/PMC27…
Ireland now has Covid-19 infection as a risk factor for blood clots- publicly. 👏
Blood clots usually occur when you have more than one risk factor at a time. Learn more about #bloodclots and the risk factors on our website: bit.ly/3Np6Q01 #SpotTheClot @NationalQPS @NVTEProgramme
I leave Rome and LongCOVID children conference arranged by @surf4children with a heart full of hope. Clinicians are getting it! Clotting IS a problem, together with many other issues: hormone imbalance/immunity. Great meeting old friends again!
A great highlight of our recent work by @YYexin et al in the @ScienceMagazine newsletter, written by @NerdyChristie, "Ghosts of viruses past could point to a way of combating all sorts of viruses" 👻 Link to our original paper here science.org/doi/10.1126/sc… Newsletter here…
People with ME/CFS often face dismissive attitudes from professionals. Though not a substitute for adequate education, the use of the NICE 2021 guideline for ME/CFS in clinical practice could improve care quality. Summary (& all infographics): bit.ly/NICE21MESummary #MECFS
Californian legislators pass Bill on medical education ".. the board shall consider including a course in infection-associated chronic conditions, including, but not limited to, long COVID, .... myalgic encephalomyelitis, and dysautonomia. tinyurl.com/4jye3jje
The cover
A dedicated issue of @ScienceTM on #LongCovid —Sex-specific differences, with perspective by @VirusesImmunity and @SilvaJ_C —Insights for therapies @AndreaCoxMDPhD —Deconvoluting "Osler's Web" @MichaelPelusoMD @DeeksSteven @DrMaureenHanson @SaydahSharon —+RECOVER Trial,…
A paper by independent researchers Mark Vink and Alexandra Vink-Niese confirms the conclusion by NICE that CBT is not an effective treatment for ME/CFS, and highlights the need for researchers to be open and transparent in their research. Read more: bit.ly/3O4qRt4
Congrats to Mark Vink (who is bedbound with ME) for publishing another paper "Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review" scibasejournals.org/neurology/1022… A true hero 👍👏 #MEcfs #CFS #PwME
Researchers at Murdoch Children’s Research Institute have recently published more findings from their ME Research UK-funded study looking at hypothalamus connectivity in adolescents with ME/CFS: bit.ly/4erLnPk #MyalgicEncephalomyeltis #pwme #ME #mecfs #research
Akiko Iwasaki Our bodies carry many chronic viruses and ancient viral DNA. About 40% of our genome has viral origins, with some retroviruses permanently embedded. In autoimmune disease SLE, ERVK-10 is overexpressed, hinting at a virus-disease link. 17/
Happy to share our latest work by @YYexin et al. on antibody-mediated control of endogenous retroviruses in mice. In the process, we found “natural antibodies” with broad reactivity against enveloped viruses. Here is how “panviral” antibodies work 🧵(1/) science.org/doi/10.1126/sc…
🔗 Paper Novel biomarkers of mitochondrial dysfunction in Long COVID patients link.springer.com/article/10.100…
A thread for nine #MECFS, #LongCovid, and related research papers from w/c 28th October 2024. Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation. 1/10
Great article. @DavidJoffe64 quote, "please do not psychologise ME/CFS or Long Covid...this is a direct organic, neurological condition, with a plethora of complex outcomes, including severe consequences for autonomy and quality of life." 1/6 bps.org.uk/psychologist/w…
I think most people don't understand--perhaps because it is hard to live with this news--how this virus might have led to a new set point in human health, pivoting us to a world where a majority of people, including formerly young healthy people, are chronically ill.
Many young US Marines with mild Covid prospectively followed ~1 year developed #LongCovid sequelae thelancet.com/journals/lanam…
I could not be more excited to be looking into the role of low-dose, weekly rapamycin to treat #LongCOVID. Hugely grateful to @polybioRF for their faith in us to get this exciting trial done right in collab with @VirusesImmunity and others. Looking to begin recruitment Q1 2025 🙏🏻
We are excited to announce an $800,000 donation to Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio's Dr. Amy Proal: polybio.org/polybio-suppor…
I am so motivated to move this new trial forward with @PutrinoLab! Especially because immune parameters in participants will be measured by our amazing collaborator @VirusesImmunity That analysis will help clarify rapamycin’s mechanism of actions when taken in a low dose
We are excited to announce an $800,000 donation to Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio's Dr. Amy Proal: polybio.org/polybio-suppor…
Todo tipo de esfuerzo físico, cognitivo, social o emocional puede empeorar los síntomas asociados con el #CovidProlongado, como fatiga o palpitaciones.
Anstrengungen aller Art könnten Symptome von Long COVID verschlimmern: Leeds – Alle Arten von körperlicher, kognitiver, sozialer oder emotionaler Anstrengung können die mit Long COVID verbundenen Beschwerden, etwa Fatigue oder Herzklopfen,… dlvr.it/TFrPG6
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