1) This review found that people with ME/CFS are profoundly impacted by stigmatisation and that it also affects their social circles, such as friends and family.
The most frequently identified issue was stigmatising experiences by healthcare professionals and physicians.
Pretty accurate. In my 5th year, it's
99% fury, hate and anger at the face of the unimaginable scale of impunity from all the abuse - and the irrational absence of change.
1% sadness and grief (nothing left in the tank and all was lost in the space of the first couple of years basically).
“I didn’t know how to be around her without making it worse”
Mia’s sister speaks about the challenges of living with someone with severe #MECFS. Mia developed #MECFS after a Covid infection and had to move back in with her family.
Foundations doing what the state and national researchers should be doing.
And proving of course that advancing #ME research it is not only a matter of funds but simple willingness to follow the science and decades of patients experience.
This 👇 is why the country needs a Plan for ME. The thousands @cgatist.bsky.social heard from were asked pre- #LongCovid. With correct medical advice it is possible, probable even, that swelling the numbers of disabled adults will end.
Clinical neglect is growing a national disaster.
As a doctor with #ME/CFS, this is probably the worst disease that exists.
Reasons:
1) ME/CFS has a worse quality of life then almost any other disease including COPD, most cancers, most heart attacks, strokes, multiple sclerosis, rheumatoid arthritis, etc.
www.reddit.com/r/mecfs/comm...
"Having heard from thousands of people what they have been through, it is appalling that the only thing that consistently seems to help is giving up work. There are even studies that show this."
#ME #LongCovid
scienceillustrated.com/health/peopl...
“I’m ashamed to say that my very first reaction to that diagnosis was, oh my God, I don’t want her to have that because that was a label, a stigma that you are taught in medicine.”
@binitakane.bsky.social speaking about her daughter’s diagnosis of #MECFS following Covid.
Stigmatisation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a scoping review
www.researchgate.net/profile/Patr...
"not only individuals with ME/CFS can be affected by stigmatisation, but also people in their social circles such as friends & family members"
#MEcfs #PwME
Autoantibodies neutralizing IL-10 in #IBD, particularly in patients carrying the IBD-associated HLA-DRB1*01:03 allele @nejm.org @carroll-lab.bsky.social
www.nejm.org/doi/full/10....
www.nejm.org/doi/full/10.... preview by @casanovalab.bsky.social
Video
Video
Chronic fatigue syndrome has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding of the disease – and he has a remarkable message for those ...
"Having heard from thousands of people what they have been through, it is appalling that the only thing that consistently seems to help is giving up work. There are even studies that show this."
#ME #LongCovid
scienceillustrated.com/health/peopl...
