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Interestingly, until very recently (until about a month ago), there were 4 examples of "scientific controversies" mentioned on the Wikipedia page of the Lancet, including the one you mentioned. Now suddenly there are only two (PACE and the paper that said vaccines cause autism), the...

A journalist, also suffering from post-covid sequelae herself (not sure which one) posted her article about PACS in the long covid group. I commented that the ME/CFS-like long covid is not a new phenomenon, medicine owes pwME a lot, and the lack of research is the reason why doctors are so...

I've found an article about this study that gives a few more details (since we cannot read the full study). https://www.sciencealert.com/covid-long-haulers-are-experiencing-brain-fog-similar-to-me-cfs The interesting bits of information: "On the other hand, five symptoms got worse: trouble...

I hear "chronic active EBV" quite often from patients so I looked it up and it seems to be a different thing from ME/CFS: https://en.wikipedia.org/wiki/Chronic_active_EBV_infection But I kind of understand why they believe this, mine also feels like the symptoms just keep going on and on, even...

I agree about the unimportant etc associations. Also, my observation in Facebook groups: EBV seems to be such a well-known trigger that a lot of people associate it with their disease, either based on the fact that they have antibodies (which I think most adults have) or that they had...

Oh, I remember her now, she is the author of the book "Pain and Prejudice: How the Medical System Ignores Women — And What We Can Do About It,", here is an article about it: https://www.nbcnews.com/think/opinion/covid-long-haulers-are-often-women-maybe-it-ll-change-ncna1259686

Abstract Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. Based on the scientific literature and our clinical/research experiences, we identify risk and protective factors and provide a guide to assessing and...

Long Covid Alliance? https://longcovidalliance.org/

I don't disagree with this kind of exposure to patients at all, I just feel the need to correct the part about people not being so ill first because they are early in the disease: there are definitely people who feel their initial 1-2 years after the infection were exceptionally challenging and...

LOL, yes, I looked at the title of the thread and thought: "Oh god, what on earth have these two done again?"

Just as a sidenote, this is exactly how pwME who feel CBT has helped them a lot post about it in my ME/CFS Facebook group (without knowing anything about PACE etc). They feel it has worked for them well and take every opportunity to share their n=1 experience enthusiastically with the others in...

https://www.cambridge-news.co.uk/news/health/me-cfs-personal-story-20562798 Another local article with Dr Mark Harper, chair of the Cambridge ME support group. He seems to be doing a great job at reaching out. The article is quite long and first focuses on his own personal story with ME/CFS...

@Adam pwme Congrats, I think your video is quite a success because it has even made it into the Hungarian long covid Facebook group, with a very detailed summary of the content for those who can't speak English. (I had nothing to do with it, it was the admin of the LC group who worked on the...

#MEAction Urges Congress To Hold NIH Accountable "MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID. Our letter urges Congress to hold the National Institutes of Health (NIH)...

Merged thread Lady Gaga ties her fibromyalgia to previous trauma, sexual assault The interesting part: "After Gaga, whose real name is Stefani Joanne Angelina Germanotta, went to a hospital to seek treatment for physical pain years after being raped, she said, the recurring sensation of...

I don't have any problems with digesting food, however, I get terrible, terrible cravings for sugar when in PEM. The interesting thing is that I can eat much less in PEM, my appetite really drops. But I still crave something sweet, usually small biscuits/cookies and I can totally overdose on...

Chronic fatigue is not hysteria but a serious post-covid symptom Very odd article and I think this type may be even more harmful than purely BPS inspired ones because it mixes things. I don't think this is intentional: people not familiar with the topic write articles about it now and turn to...

Thanks for this! I can't speak German very well, so I don't follow German-language media, although I really should. Michael Stingl is the closest ME/CFS specialist to Hungary, geographically speaking, and several months ago I included him as the only specialist in my list of doctors in the...

Great article! "At various times in the past, members of this discipline have similarly defended the “refrigerator mother” theory of autism, the use of tooth extractions to treat schizophrenia, and claims that AIDS is caused by depression rooted in “group fantasy” among gay men. " I didn't...

Perth charity funds ME research with potential clues into long Covid "ME Research UK, along with The Gordon Parish Charitable Trust, has announced a £400,000 joint initiative to research the role of viruses in ME/CFS. The research project is not only relevant to ME/CFS, but also to long Covid...