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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

Markku Partinen was an author of this ME/CFS paper: https://www.s4me.info/threads/a-qualitative-longitudinal-study-of-a-health-psychological-group-intervention-for-patients-with-me-cfs-2023-keurulainen-et-al.34562/#post-487155

This sounds like what @Jonathan Edwards has been saying. Are you involved in this?

Hoping that they make the data public so that others can analyze it. Is this all that they report: not even an effect size or table of the main findings?

Because of the selection criteria, the patient groups already had orthostatic tachycardia or reduced cerebral perfusion. So I suppose the main finding is that these patient groups have only relatively mild autonomic dysfunction in other domains. The discussion also includes some speculation...

In comparison here's a 2019 study that used G93.3 codes from the US Optum database which I think looks less reliable than the Norwegian data. https://pubmed.ncbi.nlm.nih.gov/30671425/ Prevalence of ME (G93.3) was 120 (actual data) - 870 (extrapolated) per 100.000. Female predominance of 60%...

It all depends however on how reliable those databases are. - First there is the question of whether the diagnostic code G93.3 really reflects ME/CFS. In past database-studies of this kind we have seen abnormally high prevalence rates that increase in older age groups. Table 4 suggests that...

Looks very interesting. Impressed by the work of Kielland so far. Some take-away points: - At the time of diagnosis most of the decline in income (and increase in sick leave benefits and transfers) already occurred. If you look at those years before diagnosis, the effect looks really strong...

Indeed, quite sad. I wonder if it's mainly the name 'chronic fatigue syndrome' that has made questionnaire research like this unreliable and if it's the respondents themselves who are confusing chronic fatigue with CFS or doctors.

The EMEA survey said that the average age of respondents was 50 years with the following distribution: https://europeanmealliance.org/emea-pan-european-survey-uk.shtml These look slightly younger but the age peak is also between 40 and 60. The EMEA survey was conducted online while the NHIS...