RT @TimesONeill: the science around ME is at a tipping point, the government must fund further research⬇️.

🏆 The double winners @FCBfrauen (league & cup) join the #LemonChallengeMECFS to raise awareness for ME/CFS and the suffering of those affected. They stand with many other pro clubs in Germany who’ve spoken out in recent weeks and months. Thank you @FCBayern!.

RT @FFHambu: International people with ME/cfs and Long-COVID. Our group of football supporters affected by this horrible disease is growing….

Germany’s Research Minister @DoroBaer in the country’s largest daily today: “ME/CFS patients don’t just need recognition – they need effective help!”. We strongly welcome this initiative. Let’s unleash Germany’s innovative strength and bring other European countries on board! 🚀.

Sources:.

ME/CFS is one of the most common neurological diseases, stealing the lives of millions worldwide — yet it remains invisible. No cure, no treatment, no outcry. We need change.

RT @ElizaCharley: It’s happening. New clinical guideline for #MECFS in Australia is underway. Right now - you can help us! Scoping survey o….

More and more countries are reporting a rise in disability — a quiet wave that keeps growing. At the same time, Long Covid has chronically sickened and disabled hundreds of millions around the world. The science is clear. And yet… barely anyone connects the two! . @SecKennedy.

RT @karlander_: Urgent Action Alert! Tell Congress To Preserve the #MECFS Program at CDC.

ME/CFS is underdiagnosed, underfunded, and massively misunderstood. This has to change. We need research. We need recognition. We need care. And most urgently: we need doctors who listen, believe, and learn. 8/X 🧵.

Symptoms can fluctuate dramatically. Some patients get better. Some get worse. Many remain the same for years. Symptom severity can change day to day — month to month. This unpredictability is part of the disease. 7/X 🧵.

Pacing is the most effective management strategy available. It’s not a cure. It’s survival. Pacing helps patients stay within their energy limits and avoid crashes. It prevents further damage. That’s its power. 6/X 🧵.

Psychotherapy does not cure ME/CFS. It can support mental well-being — but it cannot treat the underlying disease. This is not a disorder of belief. It’s not about motivation. It’s not fixed by CBT. 5/X 🧵.

Exercise is NOT treatment. In ME/CFS, exertion can trigger Post-Exertional Malaise (PEM) — a worsening of symptoms after physical or mental activity. Pushing patients to “do more” can cause lasting harm. Sometimes irreversible. 4/X 🧵.

It is NOT caused by deconditioning. Patients aren’t sick because they’re unfit. They’re unfit because they are sick. There are measurable biological abnormalities — especially in energy production and autonomic function. 3/X 🧵.

It is NOT psychosomatic. This is not anxiety. Not depression. Not burnout. This is a complex biomedical disease with immune, neurological and metabolic dysfunction. It is physical. Full stop. 2/X 🧵.

ME/CFS is a serious, disabling disease that has destroyed millions of lives. It often starts after viral infections — like COVID-19. There’s still a lot we need to learn. But there’s also a lot we already know. And it’s crucial that doctors understand these basics:. 1/X 🧵.

RT @RorPreston: This could be huge step forward for the UK 🇬🇧. #MECFS #LongCovid #PAIS.

RT @thetimes: More than 400,000 people in England have myalgic encephalomyelitis (ME), according to a new study highlighting how those with….

Saying ME/CFS isn’t deadly is like saying AIDS isn’t. You might not die from the illness directly – but from its complications, from systemic failure, from isolation. It’s time to take this seriously!. @NIHDirector @BMBF_Bund @DrJBhattacharya @NIH_NINDS @TinoSorge