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➡️ Drug trials for #LongCovid and #MECFS I have updated my overview of ongoing or planned trials for drugs for the treatment of Long-Covid MECFS. I have included what I consider to be the most promising drugs and studies, as well as all studies from Germany. 1/2

@heatherfeather.bsky.social Post-Viral Trials News They told me you physically need to go there once a month or so, but can administer the SCIG yourself.

Not good!

For patients with POTS: what is your COMPASS-31 score? You can score yourself here in about two minutes: hattrevaluationtools.eu/compass-31/ (Please RT, it’s related to a trial!)

Spoke to the screener for the Hizentra clinical trial. She said there was an open-label extension so everyone would get the treatment eventually if it helps. But I didn’t pass the screener because I have ADHD

The reason I asked is the Hizentra trial claims you must have a COMPASS of 40+ to participate. I would urge anybody interested to sign up for screening anyway – they sometimes loosen criteria later (multiple trials dropping PCR test requirements and first-infection time limits)

My opinion is that if you have post-Covid POTS, you should do the screening even if you won’t make it through for whatever reason. I think they’ll have to budge on these inclusion criteria eventually, and telling the FDA “we have to reject 99.2% of patients” might speed it up

If you’re on Bluesky, I just made an account – postviraltrials.bsky.social. Eventually I think I’ll probably stop posting on here – this place is clearly a declining annuity – and it seems like Bluesky is the future.

A provisionally accepted paper has come out that claims oxaloacetate performed better than placebo in improving fatigue in #MECFS. frontiersin.org/journals/neuro…

How’s it been going with the Hizentra screenings? Just heard from somebody that I referred that they rejected her because of a) lung damage (ehhh iffy but okay), and b) she had gone to talk therapy at some point in her life. I’m worried about recruitment for their trial…

Sawyer Michael Peluso, MD they get unblinded this month, but i'd assume they will post it ASAP

We are excited to announce an $800,000 donation to Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio's Dr. Amy Proal: polybio.org/polybio-suppor…

I have not been following trials news as closely lately, but what I continue to do will be on Bluesky. I know we’re all sick and a lot of people don’t have the energy to switch to a new social media network, but I can’t be on here anymore. Find me at postviraltrials.bsky.social

Post-Viral Trials News Dropping this link for anyone who needs help getting set up there. x.com/CHRomatowski/s…

On the other site, I posted recruitment information for an interesting new trial on a POTS drug