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If only 1 in 6000 people have the HPP condition, then there probably won't be many people diagnosed with ME/CFS who actually have HPP. So, of course, they may not have much impact on the average ALP levels in people in the UK Biobank with an ME/CFS diagnosis. But, finding those people could...

70% of PASC reported fatigue. I'm plodding my way through these findings incredibly slowly today. That's the Physical Activity Questionnaire results. Not much difference between the controls and PASC, even after PASC onset. I wouldn't necessarily be so trusting of what people report about...

University of Pavia and University of Milan. We've been seeing a few Long Covid studies from Italy. As SNT says, only 11 people with Long covid, non-hospitalised, which is probably too small to find many issues, given that they didn't even stratify on the presence or absence of PEM. 54 years...

Thanks very much for writing about the petition @dave30th. The petition has had 73,000 views. (A substantial number of those have been by me, but, even so.) Here's the link: https://chng.it/xwQ9bGgcdL

I haven't been following this, but I thought, just from what I had heard in the media, that paxlovid administered in the first week had a material impact on the chance of a severe infection and so was a good thing to do. EndME, why do you say that it probably doesn't help anymore? Is it that...

There are 281 comments so far. I don't think the number is displayed anywhere, but I can download them to a spreadsheet.

I'm finding it hard to make much sense out of findings around levels of SARS-CoV 2 antibodies. I think we've seen papers claiming, higher, lower and no different in people with Long Covid. Within this paper we have higher levels But, at the same time, there were enough people with Long Covid...

I found this to be a great patient account, useful for new patients and for health care professionals to read. It conveys the awfulness of the illness, while not eliminating hope. I'm sorry that you have been through so much @Wilhelmina Jenkins; I hope you, and all of us, get some answers...

I'm assuming this means they found nothing much? Not feeling enthusiastic to spend time on this paper.

https://medlineplus.gov/lab-tests/alkaline-phosphatase/

Yes. From the paper, it looks as though there are ways to stage the testing, and genetic testing isn't strictly necessary. But it does sound as though screening for this condition in people who present with fibromyalgia (and probably ME/CFS with muscle pain) would be useful.

No particular person was identified as having HPP; the authors were working with de-identified data. They are just saying, we looked at some medical records, and a substantial number of people warrant further investigation for HPP. This sounds important. Here's a genetic disease that can...

?? It's this study: The relevance of pacing strategies in managing symptoms of post-COVID-19 syndrome Authors: Ghali A, Lacombe V, Ravaiau C, Delattre E, Ghali M, Urbanski G, Lavigne C (Angers University Hospital, France) Of course we have a thread on it: The relevance of pacing strategies in...

About the financial donations on the Change.org petition: If someone donates, that money buys visibility for the petition when people are on the Change.org website. Our petition becomes one of the ones that people who are there to support their favourite cause might see as 'Other petitions you...

The email sent to various Cochrane addresses linked through to the thread with the open letter. That thread has a list of some of the people who support the letter and a link through to the petition. I was thinking that we could say how many people have supported the petition on the open...

Great to have the German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V. supporting the letter. Thanks @Joh for coordinating things.

No association found with EBV... Due to a limited number of cases, but even so. And nothing for dengue fever or Lyme or rickettsias. I don't know. The Taiwanese health database should be a gold mine of information, but it's hard to know what can be trusted.

I don't think the authors looked hard enough. e.g.CFS/ME is associated with pandemic influenza infection, but not with an adjuvanted pandemic influenza vaccine, 2015, Magnus, Hornig, Lipkin et al

That's an interesting question. That seems pretty significant. Look at the hazard ratio for people taking doxycycline (0.1). It goes against the idea that the antibiotics, and especially (cipro)floxacin might be predisposing factors for ME/CFS onset. I expect that are plenty ifs and buts to...

And that might be the most accurate statement in the introduction. There's an awful lot of saying things confidently when we really don't know. Never mind the exact pathogenesis, I don't think we have yet narrowed down which ball park we are operating in. Yeah, but is it though? I've pretty...