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I wonder if trying to get Nath and Walitt to attend these kind of things would help them “get it” or if it is already a “lost cause”.

Is it a reply to criticisms they have faced which they judge as “unfair”, or are they brainwashed by the narrative that ME organisations are militant and trying to “pacify” them?

have they ever seen/read about someone with very severe ME. This just makes me sad :(

Hi, I couldn’t find a general thread to post this so I’m making a new thread. A small but in my opinion cool way to increase advoacy, an initiative from my girlfriend: My girlfriend is the best. Organising a screening of Unrest at the university I had to drop out of due to severe ME.

I know they took it from a patient’s quote but the “life back” headline bothers me a little, atleast seems to me to make the assumption people with long covid don’t have a life. Of course I’m typing this while bedridden and socially isolated, but I would find it insulting if I was told I “didn’t...

Edit: Full title of trial, led by Leicester University, UK: A phase IIa double blind, randomised placebo-controlled trial of Tocilizumab to investigate the effect on health-related quality of life in adults with Long COVID and persistent inflammation (PHOSP-I) _____________ UK BBC: Long Covid...

That is really cool I hope it goes well :) This is probably not what you’re looking for but I read someone’s testimony on pheonix rising a month or so ago who went through the lightning process. In case it is of any use to you...

I remember reading quite a few “Functional Somatic Syndrome” studies funded by the DOD which included ME/CFS. Happy they are now funding the biomedical route.

I can’t find anything about a phase 1 trial? Can they go straight to phase 2, is that a thing?

This project is supported by The Assistant Secretary of Defense for Health Affairs endorsed by the Department of Defense, in the amount of $499,200 for the planning phase with an option to execute the $12,6 million clinical trial after the planning phase has concluded, through the Peer Reviewed...

Yeah this place here is really my safespace. Thank you all for all the effort you make in moderating and keeping it so :)

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...