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I'm afraid that's pretty representative of how things are in Germany with respect to ME/CFS and LC. Some of the most prominent critics of what's going wrong in healthcare and research aren't examples of good practice themselves. Just looked up two physicians quoted in the article: Dr. Diego...

Need a break now and won't be able to return for a while so just leave another unfinished comment here: I thought Adreas Goebel's piece on 'Future healthcare for patients with the common pain disorder ‘fibromyalgia syndrome’ – fundamental changes based on the discovery of an immune cause'...

Apologies -- only able to skim and just popping in -- what a weird pro/contra debate that is between Burton and Ellis (another Rheumatologist?) Ellis: "The evidence is clear. People with symptom-based disorders don’t benefit from being ‘sliced and diced’ by traditional medical models focused...

Hi 22MrMan, Thank you for taking the time to come to S4ME. I agree with a lot others have replied already but was only able to skim. Especially I don't understand why you think you know that S4ME members are biased if you just came here. As you are now a forum member yourself, maybe you...

Another point I think others already have made is the question whether the testing and data allow to tie effort preference to motivation. Wallit et al seem to argue that in the different tests (finger tipping/ reward test, CPET, repeated hand grip) study participants have been motivated...

So did the study authors just not account for symptoms immediately before the test or did they also not assess them at all at that time point (immediately before the test) ? If they did actually not assess symptoms both in pwME and control group before the test, that seems 'problematic' ...

I see they also used accelerometers. Could accelerometers also be used as such a monitoring device -- if all trial participants wear them anyway, could the data be used to develop different sensible 'potentially valid pacing strategies' that could be used as controls in addition to different...

Just parking here: Spinetti, Davide, and Ignazio Roberto Zarbo. 2025. “Tired Minds, Normal Scores: Rethinking Cognitive Fatigue in Multiple Sclerosis.” Frontiers in Neurology 16: 1664734. doi:10.3389/fneur.2025.1664734. Thread on the paper here:

For those like me who have no idea about the All of us dataset (and who unlike me are able to understand) -- I think it's described here: The All of Us Research Program Genomics Investigators. Genomic data in the All of Us Research Program. Nature 627, 340–346 (2024)...

Forum thread here: https://www.s4me.info/threads/persistent-fatigue-induced-by-interferon-alpha-a-novel-inflammation-based-proxy-model-of-chronic-fatigue-syndrome-2018-pariante-et-al.7050/ For related research maybe use tag search for 'Pariante'

Deepl translate: About the journal -- from Wikipedia: Deutsches Ärzteblatt is published by the Deutscher Ärzte Verlag, which is co-owned by the German Medical Association (Bundesärztekammer) and the National Association of Statutory Health Insurance Physicians (Kassenärztliche...

:thumbsup:

Or on the DecodeMe website under "support us": https://www.decodeme.org.uk/support-us/

And on Mastodon:

To facilitate sharing -- from Tom Kindlon: "If you'd like to support the researchers behind #DecodeME with other projects eg #SequenceME www.clinicalresearchnewsonline.com/cln/pressrel..., here's donation link www.decodeme.org.uk/support-us/Alternatively donate directly to Prof Ponting's #MECFS...

Good to see you covering the first findings too, @dave30th From your blog article: "Luckily, the SMC also invited two less biased observers to comment. This balance is certainly an improvement." I think the forth commenter also deserves a mention? -- even if she didn't declare her...

Thanks for your continued work on this @OrganicChilli and sorry for replying late and bad timing. Just before I disappear again for a while I thought I'll release a post from my draft folder: The first edit looks fine to me. Not sure about the (complete) second edit: I think 'pattern'...

Yes, thank you @OrganicChilli -- great to have a German translation -- and yours looks excellent. Just a few minor questions/ suggestions: Not sure about using digits for numbers from 1-12 especially if declined. I think "Die Krankheit betrifft etwa einen von 250 Menschen" would be better...

Yes, the title using only the first part of the proverb could be understood as a critique of it, but combined with "people triumphing over extraordinary difficulty" it rather sounds like an endorsement. That's highly problematic per se. But whatever title and blurb are supposed to actually...

It seems the link to the Editor-in-Chief's 2019 statement in the latest version of the editorial note doesn't work anymore? I get only a "page not found" message for https://www.cochrane.org/news/cfs