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From the FAQ: "Yes, we will publish all the videos on our website and YouTube after the conference." https://unitetofight2024.world/faq/

Trial by Error Project Update: Berkeley's May crowdfunder reaches 25% of the goal... "This week, Pete Judo, a behavioral scientist and popular podcaster, demolished the PACE trial, with my help. The video has had almost 20,000 views since Pete posted it yesterday. "I also spoke with one of...

In Germany at least, I'm afraid, almost everyone says rehabilitation is good for almost everything. And I think after stroke and/ or certain orthopedic injuries/ surgeries there may even be some evidence for that to be true? And apologies, rather off topic but something I'm dealing with ATM --...

Full paper published -- open access https://bjgp.org/content/70/691/e78

Apart from what I posted above -- that the whole approach / review/ referencing seems flawed to me -- , from that graphic it's not clear to me whether the recommendations refer to currently having PEM or generally experiencing PEM / known PEM from certain triggers? I guess the latter is meant...

Apologies not able to read others' posts ATM just thought I'll post the direct link to the recommendations graphic to facilitate discussion https://media.springernature.com/full/springer-static/image/art%3A10.1186%2Fs40798-024-00695-8/MediaObjects/40798_2024_695_Fig2_HTML.png?as=webp

"Our recommendation for pacing (energy envelope maintenance) in severe PEM is based on a recent UK study showing that a structured pacing protocol significantly reduced the incidence of PEM and improved the general condition of patients with long COVID [68]." Except that it likely wasn't pacing...

From the quotes Hutan on which commented above "Several studies in ME/CFS, which is defined by severe and debilitating fatigue with no known underlying pathology, found people with ME/CFS to have a tendency to direct attention towards fatigue-related stimuli, when compared to healthy...

Now am very exhausted just from going to the loo and other basic activities: For seven weeks, I'm not allowed to use my left leg/ stand on my left foot at all (and hurts badly when I still accidentally do which happens several times at day and night when too wobbly with the crutches) So...

Was only diagnosed with this after falling badly which left my knee not only much more painful than before but also couldn't move it as I used to do. MRI showed a ruptured medial meniscus ('acute tear of medial meniscus') which explained the new pain but what seemed more concerning: articular...

Thank you to everybody looking in detail at the paper. The statistics and other mathematical details are beyond me. Only able to skim anyway so apologies for not being able to comment on that. Others' comments look like a very impressive analysis so far -- just am not able to follow. I still...

Plus, I realize I might not be representative but for me, having a 30-45 minutes conversation is more exhausting than doing a CPET and will cause immediate worsening of symptoms. Would feel overwhelmed by having to gauge my burden of twelve symptoms immediately after an interview that lasts...

Only skimmed part of the paper -- how they measured PEM. Thought there are a couple of points worthwhile to discuss: "All interviews were conducted bedside in the volunteer’s hospital room with one study team member observing, except for the 4-hour post-CPET interview, which was conducted via...

The results from the visual analogue scale (VAS) = quantitative data?

Another of my favorites is that paragraph on endpoints: "In 2019, stakeholder feedback regarding the NICE guideline on depression expressed concern that NICE had not considered long-term outcomes. They requested that ‘NICE should conduct a proper analysis of 1 and 2-year follow-up data where...

Maybe we all should collect them / can use them for a gigantic piece of mail art? In better times, I used to use the nicely colored paperboard of the cards and envelopes to make personal greeting cards or also season greetings -- (the stars...) So who knows -- if anybody felt inspired to make...

Protocol for the Long Covid sub-project now published, see this thread: Apologies for repeating myself: A critique seems even more warranted as this research group's agenda could be very much in line with the newly funded research on ME/CFS in the Netherlands -- see this thread. Judith...

I expect JNNP people have already shared it with all the authors/ signatories of the anomalies piece and want to give them the opportunity to publish their reply together with the rebuttal paper by NICE? I wish I could share others' optimism. While it's true that I can't think of a reply by...

From another thread: There's also an extension for Firefox -- works on my laptop both with windows 10 and ubuntu (dual boot). A note and link to comments on PubPeer pop up wherever papers are cited -- including on S4ME and in papers' references. Edit: There's also an extension for Safari/...

Thanks for posting -- both to Scott and Dolphin. Transcript: Heads up! A threat to our community: A known psychologizer of #MEcfs and #LongCovid with connections to the insurance industry is approaching patient organizations to support their 'research' project known as "Core Outcome Set for...