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All the energy was sucked out of my soul and my bones Another, originally English article has reached Hungary, this time based on this one in Time: https://time.com/6051767/long-covid-19-rare-disease-pots/ It is about post-covid syndrome and that many long haulers have POTS and ME/CFS. It is a...

His source is from 1977. I love this reply to him (click on the gif in the tweet): :rofl:

Well, in connection with the right and wrong patient "activist" behaviour: AIDS activists back then poured fake blood on people, they stormed schools with pamphlets that warned teenagers of the dangers, they put a giant condom on a senator's house, etc etc etc, the list is really long. When have...

New article! And no, I think you don't want to know but in case you are in a bit more masochistic mood: 6 Ways to Cope With Chronic Fatigue Syndrome It is quite detailed but in short: - seek the correct diagnosis - address sleep problems - eat a wholesome balanced diet - drink water...

This is an older post but I just had an encounter with this man posting these videos. It was in a FB group called something like Covid research and all the rules there are about serious science, no pseudoscience etc, they even ask if you are a researcher when you join. They welcome researchers...

Is this a common occurence in the world? o_O And what is wrong with "over-investigation"? My Hashimoto is so mild that it would have never been discovered so early without the thorough exlusionary diagnostic process for ME/CFS that I'm going through. But even without that, what is so wrong about...

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...