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This is a living review which will be regularly updated (every 6 months or sooner if there is important new evidence) and the authors have funding to this for at leats 3 years. Perhaps the patients involved could highlight some of these problems?

Except for two cognitive tests, all of their outcomes are subjective. I think this might become a problem if more rehabilitation trials are done where subjective outcomes show an improvement but objective outcomes (6minute walking test, CPET, employment etc) don't. It might cause the same issues...

Noticed that the protocol says this about conflicts of interest (my bolding):

Tilestats is also useful because he often breaks it down to the by hand calculation: https://www.youtube.com/@tilestats A similar YouTube account is Statquest by Josh Starmer: https://www.youtube.com/@statquest/videos

Yes according to their standards, this should have at least the same certainty of evidence. But they downgraded it twice, once for selective reporting and the second time because the reviewers believed there is no plausible mechanism:

It's actually worse because they recalculate the results based on summary data which is less precise compared to what the original study reported. For example, the REGAIN study primary result for the PROPr questionnaire was 0.03 (95% confidence interval: 0.01 to 0.06) which is lower than the...

If I understand correctly, they didn't do any meta-analysis at all. For all outcomes summarised, the number of trials = 1. So they simply reiterate results from individual studies, most notably the Knoop trial (for CBT) and the REGAIN trial (for rehab). Both trials were high risk of bias for...

This is all based on the 1 Dutch trial by Hans Knoop (Kuut et al. 2023, discussed here). A study on COPD patients found the minimal importance difference for the CIS-fatigue scale to be 9.3 points, so bigger than the 8.4 difference found in the CBT trial. The reviewers rated the Kuut 2023 study...

This is the paper that contains 'helpful facts' for which they author received a lot of criticism on social media (seems that she has now deleted that post)

Jason Busse also makes an appearance. His question was: 'How do we in in in an effective and appropriate way engage people in this idea that they can try this approach which seems entirely counterintuitive to their experiences, to what they are hearing online, to all of the information in...

Was scrolling through the YouTube video and saw this image, suggesting PEM is like Pavlov conditioning with dogs:

These are the same NHIS surveys as discussed here: https://www.s4me.info/threads/cdc-data-brief-myalgic-encephalomyelitis-chronic-fatigue-syndrome-in-adults-united-states-2021%E2%80%932022-2023-vahratian-unger-et-al.36480/page-3#post-566136 This paper analyses the 2022 survey but the 2023 data...

Thanks for the compliment. I tend to share posts on multiple platforms now. Quite unfortunate that the community is now split.

I have no personal experience with this but I think that the most effective use of charity funding for ME/CFS research in the US would be to lure and support scientists in applying for these bigger NIH grants. You can use charity money to help them get preliminary data and in writing many...

I think the list also shows that an NIH grant is a realistic goal. It's not like EU Horizon Europe grants that only go to big consortia with top institutions from multiple different countries involved. Avik Roy got funding for a speculative mouse model with only some very preliminary data and he...

Made a summary blog post here: https://mecfsskeptic.com/nih-funding-for-me-cfs-in-2024/ Social media summaries: https://bsky.app/profile/mecfsskeptic.bsky.social/post/3lbmkj6ux632t

There is a NIH funded trial for Gulf War illness that will test this: Microbiome targeted oral butyrate therapy in Gulf War multisymptom illness The goal of this clinical trial is to determine if a Butyrate formulation that consists of butyric acid as calcium and magnesium derivatives in a...

Seems like I overlooked some projects, will update the list later on.

I've tried to make an overview of ME/CFS studies that received NIH funding in 2024. I've only included studies whose primary focus is ME/CFS - it's likely that ME/CFS is included in other projects such as those on Long Covid or other related conditions. EDIT: This post has been updated. I...

There is the NIH-funded study to test metformin in fibromyalgia: https://reporter.nih.gov/search/yRt6xcKZp0uEl3CiqgghbA/project-details/10809033