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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...

:thumbup:

Thanks very much to Millions Missing France for their support, and for supplying a French translation of the petition content

Thank you to the World ME Alliance for undertaking to share the link to the petition with their member organisations. Thank you to Millions Missing Canada for supporting the petition.

Less than a day after starting the petition, we have over 1800 signatures, and hundreds of comments, many of them from people with ME/CFS and Long Covid who have been harmed by medical advice that they should exercise their way to recovery. I know that exercise can harm, of course, but reading...

The Science for ME forum started a petition on 4 September: Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review on Change.org The link is here: https://chng.it/zTZ7vX9Czd It is part of the forum's campaign to have the 2019 Cochrane Exercise Therapy for CFS review withdrawn, and...

I've just skimmed the rest - a lot is covered. I think it's a decent review, a handy resource for researchers.

I think this (tissue banks) might be something post-infection disease advocates need to work on.

I agree with you both. When I saw the title, I was hoping for a biomedical study that might have found something, so was disappointed to see it's just a review. But, I guess it's legitimate to read some papers and make some conclusions, including related to what needs to be studied next, and...

I found this recent paper useful in understanding these recent medicines for migraine: Calcitonin Gene-Related Peptide Receptor, 2023, Rashid and Manghi It's interesting to think how the raised blood CGRP in people prone to migraines might also be related to orthostatic intolerance and PEM...

Sounds like good news German Government announces new funding guidelines for ME/CFS