

Its ME Matina
64.8K posts

@justask
#MyalgicE Patient Advocacy 4 better treatment & cure. UR life/dreams are gone before ur eyes! Federal Advocacy Research Education & Funding #Dysautonomia





I’ve long since made my peace with the fact that sometimes we have to do small, noisy studies in order to justify doing larger, better powered studies. And for the correct audience, hyping the small, noisy studies can help develop buy-in for doing larger, better powered studies.

We know from both HIV and Hepatitis C that combination antiviral therapy for months is a NO BRAINER. The fact they are doing trials with one antiviral for 25 days show they are purposely keeping people sick. These people should be prosecuted as criminals.

This week in illogical clinical trials: RECOVER-VITAL shows no benefit for long COVID with 15-day or 25-day paxlovid. Results appeared in the registry 15 months after primary completion, with no publication or announcement. c19early.org/zimmerman2.html Four trials have tested paxlovid for long COVID treatment: three show no benefit and one remains unreported. While authors did not publish the results, they published a paper this month that states: “While the STOP-PASC and PAX LC trials did not demonstrate a positive effect on Long COVID, the RECOVER-VITAL study remains a critical addition to the field and still has potential for demonstrating effect…” journals.sagepub.com/doi/10.1177/17… 🧵











I currently have three papers in review at "high impact" journals. One of them has been sitting there for two years. In that time my daughter was born and learned how to walk, but apparently publishing a PDF was still not possible for me. For another one, after four months in review the editor told me they cannot find a second reviewer and asked me to suggest more reviewers. A third one sent me a message in 2026 saying the PDF I uploaded was larger than 10 MB and that I should please reupload everything to make the file smaller. All of this just to eventually pay between 7,000 and 12,000 USD per paper so someone can officially approve that the science we do is "legitimate". Reminder: not a single reviewer will be compensated here. I still don't understand how we as scientists can collectively be so smart when doing science and still tolerate a system like this when it comes to sharing our findings. We should move to preprints plus open review, whether human or AI, asap. So frustrated about it. I'd suggest sharing your work on bioRxiv or medRxiv, reading and reviewing preprints when you can, and highlighting good research, especially if it is still a preprint. Try platforms like ResearchHub (that pay for peer review) and experiment with AI based reviewers for faster feedback. Instead I read this as a proposed "revolutionary" measure:












