#MECFS is a severely debilitating illness that leaves about 25% of the patients housebound. Did you know that the illness does not only affect the lives of the patients, but that the quality of life of partners and other family members also is severely impaired? #MEAwarenessHour
PS. There are individuals that became much better also with GET, so you can always select single cases and misrepresent the efficacy. The bottom line is that the chance of improvement is much less than for pacing and the risk of deterioration much larger. www.pnas.org/doi/10.1073/...
@paulgarnerwoof.bsky.social argues that his case (n=1) shows that positive thinking and exercise will cure #MECFS. Here are some more comprehensive statistics from a recent survey. Graded exercise therapy (GET) is the worst intervention by far (n=299), and pacing is the best (n=803).
Beentjes et al., comparison of traits for people with #MECFS and controls in UK Biobank data. Hundreds of traits differed between cases and controls, but single traits couldn’t distinguish case from control. The results cannot be explained by inactivity. www.embopress.org/doi/full/10....
Fluge et al., pilot study on subcutaneous anti-CD38 antibody daratumumab in moderate to severe #MECFS. For six responders of ten patients, mean SF-36 PF increased from 32.2 to 78.3. Low NK-cell count was significantly associated with lack of response. www.frontiersin.org/journals/med...
Good point by Dr. Tuller: The authors of the ReCOVer study noticed that activity levels didn’t improve with the intervention, but dismissed the finding claiming reported fatigue is unrelated to movement. But according to their theory, the fatigue is CAUSED by inactivity.
Dr. David Tuller. Chronic Denial: “The psychosomatic interpretation of Long Covid recycles a discredited framework, one that has repeatedly failed patients with #MECFS.”
www.openmindmag.org/articles/goi...
Documentary: Five medical doctors open up about living with infection-associated chronic conditions: “They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare.” #MECFS
www.youtube.com/watch?v=J0yw...
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
#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
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/...
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
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...
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
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
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
“Reify” seems to be a buzzword among proponents of biopsychosocial view of #MECFS: “Diagnostic criteria don’t reify illness”. I would like to point out that miraculous recovery stories to provide “hope” don’t reify evidence-based treatments that lead to objective improvement.
Riksförbundet för ME-patienter har tillsammans med sju verksamma kliniker och forskare skrivit en replik på ett mycket problematiskt inlägg av Jörgen Malmquist och Lars Englund i AllmänMedicin om vården av personer med ME/CFS. #SvMECFS allmanmedicin.sfam.se/p/allmanmedi...
Trial by Error: Researchers and clinicians write to Cochrane about the exercise review on #MECFS: “The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria.”
virology.ws/2025/02/20/t...
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
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
Trial by Error: Professor Jonathan Edwards’ letter to the BMJ on the mess with the Cochrane review of exercise for people with #MECFS.
virology.ws/2025/02/03/t...
Research paper: Post-Exertional Malaise in people with #MECFS evaluated by analysis of the cerebrospinal fluid.
www.mdpi.com/1422-0067/26...
Hilda Bastian blogs about the cancelled update of the Cochrane review of exercise therapy for #MECFS.
absolutelymaybe.plos.org/2025/01/24/w...
#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
Research paper: “Hippocampal alterations may contribute to the neurocognitive impairment experienced by long COVID and ME/CFS patients.” #MECFS
journals.plos.org/plosone/arti...
Lysande krönika av Agnes Arpi: Svenska Covidföreningen JO-anmäler Socialstyrelsen för handläggningen av kunskapsstödet för postcovid och närliggande tillstånd. #SvMECFS
www.altinget.se/artikel/sven...
Research paper: “These data identify T cell exhaustion as a component of ME, a finding which may provide a basis for future therapies, such as checkpoint blockade, metabolic interventions, or drugs that target chronic viral infections.” #MECFS pubmed.ncbi.nlm.nih.gov/39621903/
The criticism against the studies on CBT and exercise for patients with #MECFS has often been dismissed as an expression of anti-psychiatric sentiment. Did you know that many psychologists openly have rejected these trials and the psychologization of #pwME? #MEAwarenessHour
Merry Christmas and a Happy New Year! Many people are isolated during the holidays due to chronic illness. #MECFS is one of the most disabling illnesses; 25% of the patients are either bedbound or homebound. Make a new year resolution to treat them with respect! #MEAwarenessHour
