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Imagine if all the energy that #MECFS deniers have spent belittling patients and trying to invent new euphemisms for hypochondria were used to support patients and study the illness. There may still be no cure, but we would have come a long way! #MEAwarenessHour

submitted 9 days ago • 1 comment

ME/CFS is not being able to fulfil your dreams. ME/CFS is pain. ME/CFS is social isolation. ME/CFS is never feeling refreshed in the morning. ME/CFS is economic disaster. ME/CFS affects tens of millions. ME/CFS should be a priority. Why is it not? #MECFS #MEAwarenessHour

submitted 2 days ago • 1 comment

🚶‍♀️ Pacing Upright Activity 🚶‍♂️ Living with #MECFS and #LongCOVID requires making hard choices—including time spent upright. 🔹 Break tasks into chunks 🔹 Use seated/recumbent options 🔹 Mobility aids help 🔹 Listen to your body 📥 Learn more: loom.ly/0Or2G20 @OpenMedF

submitted 14 days ago • 4 comments

Mary Dimmock and Todd Davenport, two members of the team designated by @cochranecollab to write a new protocol and review of exercise therapy for ME/CFS, have written to Cochrane and also to the ME/CFS community. www.facebook.com/david.tuller...

submitted 10 days ago • 1 comment

Swiss doctors found that hydroxychloroquine plus sun protection reduced Epstein-Barr virus and skin lesions in a child with a rare EBV-linked disorder. This hints at a new antiviral approach for EBV. onlinelibrary.wiley.com/doi/10.1111/...

submitted 9 days ago • 0 comments

Cochrane should remove faulty and dangerous review. Do they still stand for sound scientific publications?

submitted 9 days ago • 0 comments

@cochrane needs to withdraw this ME report on GET. It is false and dangerous.

submitted 10 days ago • 0 comments

Natural killer (NK) cell dysfunction in ME/CFS. www.meresearch.org.uk/natural-kill...

submitted 14 days ago • 0 comments

Dr. Akiko Iwasaki, who has led work on the role of human endogenous retroviruses (HERVs) in chronic diseases i.e. lupus, is now investigating the role of HERVs in Long Covid.

submitted 16 days ago • 4 comments

🧵 "Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds" www.eurekalert.org/news-release... Research on people with autoimmune diseases but people with other conditions will sadly be able to relate #chronicillness 1/

submitted 16 days ago • 9 comments

🚨 SciShow just covered ME/CFS! ⚠️ Key clarification: Don’t push past your limit, even if you don't feel worsening symptoms. Clinicians recommend doing 50% of what you think you can to avoid crashes. 🎥 Watch and share: loom.ly/CeL4Zr4 #pwME #MECFS #LongCOVID

submitted 16 days ago • 2 comments

Artikel om mig i GP (öppen). Såhär har vi det i Sverige eftersom det inte finns kunskap om ME. Även i STT sedan innan. #MEcfs #semecfs #severeME www.gp.se/livsstil/jes... www.sttidningen.se/nyheter/sten...

submitted 18 days ago • 1 comment

Cerebrospinal fluid metabolomics, lipidomics and serine pathway dysfunction in myalgic encephalomyelitis/chronic fatigue syndroome (ME/CFS) www.nature.com/articles/s41...

submitted 19 days ago • 0 comments

In today’s Vatnik Soup, I’ll introduce Russia’s main narratives and explain how they are being spread online by Russian operatives and MAGA Republicans. After three years of war, Russia still relies on old narratives, now amplified by the Trump administration. 1/25

submitted 26 days ago • 14 comments

A letter to Cochrane requesting withdrawal of its flawed, outdated 2019 review of exercise therapy for chronic fatigue syndrome, in the wake of the organization's abrupt Christmas decision to abandon a planned update. virology.ws/2025/02/20/t...

submitted 29 days ago • 4 comments

🧬Science Wednesdays: Oxidative Stress Free radicals are molecules that are produced naturally as byproducts of cellular processes, like cell metabolism, but are unstable because they have unpaired electrons on their outside. They are normally neutralized, or made harmless, by antioxidants. (1/4)

submitted 30 days ago • 1 comment

A thread for fifteen #MECFS, #LongCovid, and related research papers from w/c 10th February 2025. Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation. 1/16

submitted 33 days ago • 1 comment

Headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research from w/c 10th Feb can be found in our latest News in Brief forum post. Topics: News, advocacy and articles More on Cochrane - again & Published research www.s4me.info/threads/news...

submitted 34 days ago • 0 comments

New interesting UK study: Mechanisms of Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid with predominant fatigue: a magnetic resonance spectroscopy study of the brain and muscle at 7 tesla academic.oup.com/ijnp/article... #MEcfs #LongCovid

submitted 35 days ago • 3 comments

#CochraneStuff This is getting complicated, so I've started a page to keep track of what I post about the Cochrane Collaboration across platforms: hildabastian.wordpress.com/cochrane-stu... New today: My open letter asking the Cochrane Board questions about transparency of governance and minutes.

submitted 35 days ago • 0 comments

The GET fanatics didn't like a study last year about muscle abnormalities in Long Covid. So they sent in a response full of nonsense, and the authors' cogent responses makes the critics look silly: virology.ws/2025/02/15/t...

submitted 34 days ago • 0 comments

🩺 ME/CFS 101: What is PEM? PEM (Post-Exertional Malaise) is the worsening of symptoms and decrease in function following exertion that was once tolerated. Learn more: loom.ly/WHK9O6U #MECFS #PEM #PostExertionalMalaise #InvisibleIllness

submitted 36 days ago • 0 comments

ME/CFS is a severely disabling neurological disease. It has been largely ignored by the medical community, despite the large scale of the problem. Pre-covid estimates suggest 50–60 million people affected worldwide—more than the entire population of Canada. #MEAwarenessHour

submitted 37 days ago • 1 comment

Here, Prof. Rob Wüst et al. is giving Wyller, Garner, Chalder et al. a brilliant lesson in basic scientific methods and Post Exertional Malaise, PEM in ME/CFS and Long Covid. doi.org/10.1038/s414...

submitted 38 days ago • 1 comment

Indlæg i den norske lægeforenings tidsskrift. (PEM er slet ikke beskrevet/defineret i det danske sundhedsvæsen, se kommentarer). #dksundhed tidsskriftet.no/2025/02/deba...

submitted 39 days ago • 1 comment

(Repeat) Most Troubling Symptoms in ME/CFS and Long COVID Patients. The bar graph shows the frequency of symptoms reported by patients with ME/CFS (blue) & #LongCOVID (red) From: "Patient-Reported Treatment Outcomes in ME/CFS and Long COVID" www.medrxiv.org/content/10.1... #MEcfs

submitted 40 days ago • 4 comments

People with #MECFS suffer from post-exertional malaise, a general exacerbation of symptoms after physical or mental activity. Did you know that cells from #pwME that are stressed with saline water show a delayed response that is different from healthy controls? #MEAwarenessHour

submitted 44 days ago • 2 comments

Here's my piece for @thesicktimes.bsky.social about Cochrane's broken promises to ME/CFS patients over its crappy 2019 exercise therapy review. thesicktimes.org/2025/02/04/r...

submitted 45 days ago • 5 comments

#MECFS is a severe illness that affects tens of millions of people. To date, there is no cure and no understanding of the pathology. This challenge can be solved, if we put our minds to it and provide funding for research. In the meantime, patients need support. #MEAwarenessHour

submitted 58 days ago • 0 comments

Research paper: Post-Exertional Malaise in people with #MECFS evaluated by analysis of the cerebrospinal fluid. www.mdpi.com/1422-0067/26...

submitted 47 days ago • 2 comments

Why does JAMA Network Open allow investigators to claim an intervention was "effective" when the trial's primary outcome results did not reach the threshold for clinical significance??? Where are the peer reviewers??? virology.ws/2025/01/30/t...

submitted 51 days ago • 2 comments

A letter to @bmj.com from Professor Jonathan Edwards of UCL about Cochrane's indefensible decision to abandon a long-promised update of its very flawed 2019 review of exercise therapy for ME/CFS: virology.ws/2025/02/03/t...

submitted 47 days ago • 0 comments

This is extremely important in a lot of countries at the time. Please please do think before letting the wrong people get into power.

submitted 48 days ago • 0 comments

CBT and graded exercise therapy studies have proven that ME/CFS and long COVID are physical diseases, yet no one is aware of that. www.frontiersin.org/journals/hum...

submitted 52 days ago • 0 comments

Lokaltidningen har skrivit om min situation. Gilla, kommentera och dela gärna. Måste nå politikerna i kommunen. #MECFS #ME www.facebook.com/share/p/15tf...

submitted 52 days ago • 0 comments

#ME/CFS Research Roadmap Webinar Series icons Members of the working group and people with lived experience worked together to plan and execute eight webinars focused on specific topic areas in ME/CFS research. www.ninds.nih.gov/about-ninds/...

submitted 54 days ago • 1 comment

The following #MECFS, #LongCovid, and related topics from w/c 20th Jan are covered in our latest News in Brief post. Cochrane review of Exercise Therapy for ME/CFS Other news, advocacy and articles Research news and commentary Coming events & Published research www.s4me.info/threads/news...

submitted 55 days ago • 0 comments

Excellent blog. Here's my post on the Cochrane mess: virology.ws/2025/01/24/t...

submitted 57 days ago • 1 comment

Cochrane's decision to pull the plug on its five-year commitment to produce a new review of exercise interventions for ME/CFS was a disgrace. The latest: a longtime Cochrane insider @hildabast.bsky.social takes the group to task for harming patients: virology.ws/2025/01/24/t...

submitted 57 days ago • 1 comment

Learn all about Post-Exertional Malaise (PEM) in the latest episode of The Basics with Clayton Powers, DPT! ✅ What is PEM? ✅ Symptoms ✅ PEM Triggers 💡 Consult your medical team before changes. 🔗 Watch: bit.ly/3BR3LnD #PostExertionalMalaise #PEM #BHC

submitted 64 days ago • 0 comments

CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases. Yet no one is aware of that because many of the researchers involved in the studies have built their careers on the CBmodel... www.frontiersin.org/journals/hum...

submitted 65 days ago • 1 comment

A thread for eleven #MECFS, #LongCovid, and related research papers from w/c 6th January 2025. Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation. 1/12

submitted 68 days ago • 1 comment

New US research Incidence & Prevalence of Post‑COVID‑19 Myalgic Encephalomyelitis:A Report from the Observational RECOVER‑Adult Study link.springer.com/article/10.1... "ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection" #MEcfs #LongCovid

submitted 67 days ago • 7 comments

Research paper: “Hippocampal alterations may contribute to the neurocognitive impairment experienced by long COVID and ME/CFS patients.” #MECFS journals.plos.org/plosone/arti...

submitted 67 days ago • 0 comments

Svenska Covidföreningen JO anmäler socialstyrelsen för undermåligt kunskapsstöd och bristande rutiner. (Problemen med detta kunskapsstöd gäller även ME). #postcovid #mecfs www.altinget.se/artikel/sven...

submitted 68 days ago • 0 comments

Mein Interview mit Christian Puta von der @uni-jena.de über (muskuläres) #PEM ist online! EN: My interview with Christian Puta on #PEM is now online and accessible without paywall (it's in German but browser translation does a decent job): www.wissenschaft.de/gesundheit-m...

submitted 92 days ago • 8 comments