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A rapid response from Michiel Tack to the BMJ on their recent Opinion piece on #ME from Miller et al.

submitted 1 day ago • 0 comments

New PLRC-funded work out from Rob Wust & team! Skeletal muscles in #LongCovid and ME differ from skeletal muscles induced by bedrest. LC and ME is not deconditioning! 1/ www.medrxiv.org/content/10.1...

submitted 13 days ago • 3 comments

Today is the international ME day. Please spread knowledge so that we can get health care, care, research and support. We do not want to suffer any more!

submitted 8 days ago • 0 comments

#MECFS is a debilitating, neurological illness. Severe cases are like torture around the clock: pain, malaise, insomnia, sensitivity to sound, touch, and light. Some believe it’s just fatigue, but that doesn't even come close to describing the reality of ME/CFS. #MEAwarenessHour

submitted 26 days ago • 0 comments

People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MEAwarenessHour

submitted 19 days ago • 0 comments

Sadly very true. Happened to me and 30 years later I’m still suffering and much worse than I was initially (I was undiagnosed for 5 years). #MEcfs #SevereME

submitted 10 days ago • 5 comments

Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome Links in image: www.cochranelibrary.com/cdsr/doi/10.... retractionwatch.com/2025/01/23/t... Screenshot from the AMMES May email newsletter #MEcfs #CFS

submitted 16 days ago • 2 comments

#MedSky Invasive cardiopulm exercise testing (iCPET) at Brigham & Women’s finds people w/ #MECFS & #longCovid have symptomatic ⬇️ aerobic capacity at peak exercise due to preload insufficiency & impaired systemic O2 extraction, latter c/w peripheral L➡️R shunt &/or limb skel muscle dysfunction. /1

submitted 15 days ago • 3 comments

Again for those in the back: 👏🏼 PEM 👏🏼 is 👏🏼 NOT 👏🏼 deconditioning Symptoms associated with effort expenditure in #LongCOVID, #MECFS and other energy limiting illnesses are physiological, not “preferential” Thanks to @RobWust for this incredible work. www.medrxiv.org/content/10.1...

submitted 13 days ago • 9 comments

“Skeletal muscle properties in #LongCOVID and #ME/CFS differ from those induced by bed rest” Objective science debunking deconditioning theories! 💥 🎤 @patientled.bsky.social www.medrxiv.org/content/10.1...

submitted 13 days ago • 0 comments

Heart Preload Failure www.omf.ngo/heart-preloa... via @openmedf.bsky.social #ME/CFS

submitted 15 days ago • 1 comment

The Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with a Normal Heart Rate and Blood Pressure Response During a Tilt Test www.mdpi.com/2227-9032/12... Screenshot from the AMMES May email newsletter #MEcfs #CFS

submitted 16 days ago • 0 comments

Födelsedagsinsamling till fördel för RME arbete för att förbättra bla den obefintliga vården för oss med ME. Birthday fundraiser for the swedish ME association. insamling.rme.nu/fundraisers/...

submitted 15 days ago • 0 comments

Review: Pyridostigmin (Mestinon) kann bei neurogener orthostatischer Hypotension ein sinnvoller Therapieversuch sein, auch in Kombination mit anderen Medikamenten. Für #MECFS wurde das nirgends untersucht, aber neurogene oH kommt auch hier vor. openheart.bmj.com/content/12/1...

submitted 32 days ago • 0 comments

The European Commission looks like they will prioritize #MECFS funding this year under Horizon Health as they did last year, according to @emec.bsky.social :

submitted 21 days ago • 0 comments

Wow! Closing in on 300 donations and 60% of the goal. Thanks!! crowdfund.berkeley.edu/project/46120

submitted 23 days ago • 0 comments

🧵 It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships www.emerge.org.au/how-to-suppo... #LongCovid #MEcfs 1/

submitted 24 days ago • 9 comments

Who are your favorite researchers in #MECFS & #LongCOVID outside of the United States, #NEISvoid? Please do share.

submitted 26 days ago • 30 comments

🧵 Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME) worldmealliance.org/2025/04/worl... #MyalgicEncephalomyelitis #MEcfs 1/

submitted 32 days ago • 3 comments

Great news. This is needed all over the world.

submitted 27 days ago • 0 comments

179 experts. 28 countries. 1 message: Long COVID is real, multi-systemic, and devastating. It affects over 400 million people. And we're not prepared. New global consensus just dropped. link.springer.com/content/pdf/10… 🧵

submitted 29 days ago • 51 comments

Persistent immune dysregulation and metabolic alterations following SARS-CoV-2 infection Pre-print; comparing those not infected with SARS-CoV-2, those infected and those infected with longer-term symptoms. www.medrxiv.org/cont... 1/10

submitted 30 days ago • 2 comments

You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal by George Monbiot www.theguardian.com/commentisfre...

submitted 434 days ago • 2 comments

A review that focuses on the pathophysiology of skeletal muscle in ME/CFS. The authors believe that skeletal muscle tissue offers opportunities for diagnosis and treatment. onlinelibrary.wiley.com/doi/10.1111/...

submitted 431 days ago • 0 comments

This is not what many people would like to hear I suspect but is important to take on board: "The majority of research funding [in general] comes from charities, with only a small percentage coming from the government for other diseases" From: www.youtube.com/watch?v=W3Ji... #MEcfs #CFS #PwME

submitted 417 days ago • 1 comment

From the Workshop on Postviral Ethics, 3 February 2025, organized by the Radboud Center for Philosophy and Society (RCPS) and Post-COVID Network Netherlands (PCNN). Quote by Prof. Dr. Georg Schomerus, University of Leipzig. #MECFS www.ru.nl/en/about-us/...

submitted 30 days ago • 0 comments

Norwegian patient/advocate & former HSEQ CEO Nina E. Steinkopf @ninasteinkopf.bsky.social engaged with Royal New Zealand College of General Practitioners, who investigated & subsequently removed endorsement of a Lightning Process article previously published in NZ Doctor melivet.com/2025/04/08/a...

submitted 36 days ago • 0 comments

ME/CFS is a severe, neurological illness that imprisons affected people in their own bodies. Severely ill people are in constant pain, must rest in a dark and soundproof room due to sensory sensitivity, and are confined to bed nearly around the clock. #MECFS #MEAwarenessHour

submitted 40 days ago • 0 comments

Dr Jarred Younger presents some new research analyses that show elevated lactate in the ME/CFS brain. "I believe these results show that ME/CFS involves brain inflammation." [8 mins] +Transcript www.youtube.com/watch?v=KDnK...

submitted 46 days ago • 1 comment

The authors of the infamous #PACEtrial for #MECFS have argued that the graded exercise they promote does not use fixed increments. Vink et al.: “Our analysis of […] the PACE trial’s GET manual for therapists exposes the fixed incremental nature of GET.” www.mdpi.com/2075-1729/15...

submitted 46 days ago • 0 comments

Several studies show that #MECFS is one of the most debilitating chronic illnesses. Many patients have symptoms around the clock and have lost many of the things that really matter: social network, career, leisure activities etc. Your support may mean the world. #MEAwarenessHour

submitted 47 days ago • 0 comments

Help. If you would like to give "newly publicated" (last years) studies to prove biological changes in ME, what would you use?

submitted 50 days ago • 0 comments

Wearable heart rate variability monitoring identifies autonomic dysfunction and thresholds for post-exertional malaise in Long COVID www.medrxiv.org/content/10.1... Rob Wüst et al. 🇳🇱 #HRV #PEM #AutonomicDysfunction #LongCOVID #ME/CFS

submitted 56 days ago • 4 comments

Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia. pmc.ncbi.nlm.nih.gov/articles/PMC...

submitted 52 days ago • 0 comments

From ME Research UK: Jente Van Campenhout at Vrije Universiteit Brussel has published a review summarising the evidence connecting energy metabolism (the process of energy production and utilisation in the body) and dysfunction of the immune system in people with ME/CFS bit.ly/41w6HyJ #mecfs

submitted 56 days ago • 1 comment

New publication: "A network medicine approach to investigating ME/CFS pathogenesis in severely ill patients: a pilot study” 🔬Read the summary: ow.ly/AFCv50VpGXA 📖 Access the publication: ow.ly/tAkl50VpGXz #MECFS #pwme #severeME #OMF

submitted 53 days ago • 0 comments

A network medicine approach to investigating #ME/CFS pathogenesis in severely ill patients: a pilot study www.frontiersin.org/journals/hum... Ron W. Davis & Wenzhong Xiao @openmedf.bsky.social

submitted 53 days ago • 2 comments

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 68 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 61 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 73 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 69 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 68 days ago • 0 comments

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

submitted 68 days ago • 0 comments