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Sten Helmfrid @stenhelmfrid.bsky.social · 16/07/2025

#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

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Sten Helmfrid @stenhelmfrid.bsky.social · 15/07/2025

@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).

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Sten Helmfrid @stenhelmfrid.bsky.social · 30/04/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 23/04/2025

#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

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Sten Helmfrid @stenhelmfrid.bsky.social · 20/04/2025

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/...

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Sten Helmfrid @stenhelmfrid.bsky.social · 09/04/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 02/04/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 20/03/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 13/03/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 12/02/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 05/02/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 22/01/2025

#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

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Sten Helmfrid @stenhelmfrid.bsky.social · 08/01/2025

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 25/12/2024

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

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Sten Helmfrid @stenhelmfrid.bsky.social · 21/12/2024

Today, December 21st, is Saint Thomas’s day. In Swedish folklore, it was the day when Christmas peace was announced. Today will be the shortest day of the year in the northern hemisphere. Merry Christmas and a Happy New Year! Tomorrow will be brighter!

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Sten Helmfrid @stenhelmfrid.bsky.social · 18/12/2024

#MECFS is a chronic, multi-system illness. Even though ME/CFS is severely disabling, many patients are dismissed by GPs. Did you know that the scientific basis has been reviewed by several expert committees, which all underline the serious nature of the illness? #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 11/12/2024

Did you know that #MECFS is a severely debilitating illness that has been chronically underfunded in research? There are about 108,000 scientific papers on Alzheimer’s disease, 76,000 on Parkinson’s disease, 65,000 on multiple sclerosis, but only 6,000 on ME/CFS. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 04/12/2024

Some critics have cartooned #MECFS as alternate science. Did you know that there have been more than 6,000 papers on ME/CFS published in peer reviewed journals and that one current and one previous member of the OMF Scientific Advisory Board are Nobel laureates? #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 23/11/2024

This would be a more honest way to market the #LightningProcess for #MECFS!

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Sten Helmfrid @stenhelmfrid.bsky.social · 22/11/2024

Quote from Dr. David Putrino. #MECFS HT: MillionsMissing Stavanger on Facebook

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Sten Helmfrid @stenhelmfrid.bsky.social · 20/11/2024

#MECFS is not “medically unexplained fatigue”. It is a severely disabling, chronic illness characterized by post-exertional malaise, sleep reversals, fatigue not alleviated by rest, cognitive dysfunction, orthostatic intolerance, and a plethora of other symptoms. #MEAwarenessHour

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