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I wish there was like a requirement of having to atleast read one major review of long covid, such as this wonderful piece: Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023)...

If anyone is looking for it in the future pas d'association francophone à ce jour en Suisse. Un petit groupe travaille avec l'organisation suisse allemande pour traduire le site en français. Vous poyvez les rejoindre sur le groupe Fecbook EM/SFC Suisse...

Merciii I didn’t think of that :)

Does anyone know if there is a french speaking branch or french speaking equivalent of the Schweizer Gesellshaft für ME (the Swiss ME association). I used to be able to speak german but severe me + brainfog means I have to limit myself to french and english. I literally can’t find any ME...

Thank you very much.

Hi I’m interested in having a copy of the documents in the subsection “for doctors” and “for patients” in this me-pedia page https://me-pedia.org/wiki/PACE_trial_documents However when I download them I just get a html version of the mepedia front page. Not sure if its because im on my phone...

Trying to come of PPI’s gave me such bad rebound reflux I lost 4kg in 2 weeks because I could barely eat it was so bad. I think until there is a better option a lot of us are just cursed to stay with them for life.

Yes. My 40mg pantoprazole is staying with me for life. Especially now that I’m bedridden. Living with ME you already have to make so many lifestyle choices that healthy people would consider “unhealthy”. And this is just one of them…

Yes. I think the equivalent of LCAP in ME/CFS, would be if a charity claims that ME/CFS is a disease caused by the mitochondria. And tries to lobby policymakers and researchers to abandon all other routes and only focus on the mitochondria. Going as far as to claim there is no point in...

mood

For reference to how unserious LCAP is, I posted a social media post [not linking for privacy reasons] which got pretty big, which was basically outlining my concerns with LCAP. I got a response from the founder (which he spammed 16 times), it claimed my concerns were “hateful and false” did...

I wonder if the persistence is the cause of immune dysregulation and such. Or the initial infection dysregulates the immune system which leads it to not fully eliminate covid-19.

I looked through their website and nowhere could I find listed who the founders/ceo/employees are. The closest I could find was: This website is being developed by people with Long Covid who are journalists, professors, scientists and experts to serve as a blueprint for a documentary production...

That is a good shout. Given this is on their front page: “ANTIVIRALS NOW” a new short film ️ directed by @JoshuaPribanic on SARS2 viral persistence reveals a destabilizing truth about Long Covid. Researchers, patients, activists & science illustrate how no one is safe from the threat of COVID...

What if that money went into confirmation of the WASF3 findings. Like I can see so many ways this money can have hundreds of times more impact than this.

LCAP has started a campaign to try and push Sander’s long covid moonshot bill, to only allow research funding to go into viral persistence. Senator Sanders' suggested legislation for Long Covid lacks direct focus on viral persistence of SARS-CoV-2, allowing for it to be combined with various...

Hi I wanted to create a thread on the organisation long covid action project to keep up with what they are doing. (A lot of which worries me.) This organisation says and claims as fact that long covid is a single disease caused by viral persistance. From their front page: Long Covid is a...

That honestly sounds like a good way to give cognitive pem

I always assumed that Wessley and co. genuinely believe in their theories and that they are correct. But seeing this number of inconsistencies in their own theories almost makes me think they might have malicious intent. (I’m sure they don’t but it is not hard to imagine).

Thank you for the very detailed and helpful answer. Much appreciated:)