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

Patients with #MECFS cannot reproduce their parameters in repeated CPET tests, but did you know that there is other objective evidence for post-exertional malaise? The gene expression, for example, shows a significantly different response than in controls. #MEAwarenessHour

A UK hospital fails to meet its obligations in handling a critically ill patient with severe #MECFS . The patient’s life is at risk. “We will keep her but under our rules.”

thecanary.co/uk/analysis/20…

Dr. David Tuller interviews Guardian columnist George Monbiot about his work on #longcovid and #MECFS .

youtube.com/watch?v=GC5i3v…

#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

A preliminary Australian MRI study shows that people with #longcovid and #MECFS have elevated levels of glutamate and N-acetyl-aspartate in the posterior cingulate cortex and that there is a dose–response relationship to symptom severity.

sciencedirect.com/science/articl…

Yes, you can use actigraphy as a proxy to fatigue for people with #MECFS : “In addition to profound fatigue, those with CFS exhibited significantly reduced overall movement [and] lower acceleration amplitudes.”

neurology.org/doi/abs/10.121…

The recent European survey of #MECFS is a disheartening testimony of unmet needs: The average time to diagnosis is 7 years. 75% of patients receive little or no help. More than 72% are mostly homebound, or worse. When will #pwME be heard? #MEAwarenessHour

europeanmealliance.org/documents/emea…

Steve Topple on the treatment of people with #MECFS in the UK: “Forced treatments, sectionings, deaths, assisted suicides […] Right now, Millie McAinsh is dying in an NHS hospital because doctors don’t believe her illness is real.”

thecanary.co/opinion/2024/0…

As a physicist participating in the debate on #MECFS , I have been flabbergasted by the errors in some publications and how people who have been exposed flatly deny any wrongdoing and are protected by a network with the same ideological outlook.

x.com/PutrinoLab/sta…

Time passes by quickly. This was fifty years ago today.

Some doctors claim that the diagnosis #MECFS is controversial. Did you know that the diagnosis is recognized by the World Health Organisation since 1969 (ICD-8), and that it was confirmed in ICD-9 and ICD-10? The scheduled code for ME/CFS in ICD-11 is 8E49. #MEAwarenessHour