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Full paper available from https://www.sciencedirect.com/science/article/pii/S089684112400101X "Our ME/CFS patients were selected from a pool of over 2000 patients exhibiting LC symptoms. Through a comprehensive evaluation process that involved clinical assessments, laboratory tests, and the...

My first quote was from the video. It is just a reminder to me that it isn't possible to please all of the people all of the time.

Hmm, "But, the one challenge that we were not able to overcome was the operational and capacity issues at UK Biocentre, and they’ve been the most significant factor affecting our project completion timeline." seems as 'straight to the point' an answer as is possible to give. A webinar...

To which questions?

The NMCB are recruiting for a new research nurse. "Your role within NMCB as a (research) nurse is to carry out and coordinate the inclusion of patients in the cohort and the biobank." https://werkenbij.amsterdamumc.org/nl/vacatures/zorg/researchverpleegkundige-mecvs-en-post-covid-- Their...

Might be bloody obvious to us but it's not obvious to others because it hasn't been previously stated in the scientific literature. We need more studies like this that report on the reality of ME/CFS.

And in the NIH Intramural study, Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

[In mice] Abstract Several metabolites have been shown to have independent and at times unexpected biological effects outside of their metabolic pathways. These include succinate, lactate, fumarate, and 2-hydroxyglutarate. 2-Hydroxybutyrate (2HB) is a byproduct of endogenous cysteine...

One of the authors, Ben Katz, is a member of COFFI - COFFI - The international collaborative on fatigue following infection

Abstract Background Post-infectious disorders of gut-brain interaction (PI-DGBI) have significant impact on children and adolescents. The effect of COVID-19 on PI-DGBI-associated symptoms in this population, however, is unknown. Methods We performed electronic medical record searches to...

Surely the opposite applies? The fact that there will be examples of properly-done PPI should mean that the poorly-done ones should be hard, if not impossible, to justify.

The following response from Sonya has been posted on Action for ME's Twitter account and, I believe, has already been sent directly to Trish. "Thank you for sharing your detailed concerns about the Care and Support Plan template on our website. I am responding to this in line with our...

We have this thread, Patient and Public Involvement opportunities in ME/CFS and other research, but to date most recruitment is via social media, charities and/or local (to the research team) support groups.

So your concern is overexertion from attending meetings with the rest of the research team? Only participants in a study, where it is appropriate, should be asked for access to their medical records; patients who are part of the study team, as PPI members or otherwise should never be asked this.

Given that it is becoming more the norm that research projects should have a PPI element, I'm curious to find out what, if any, barriers there might be to getting involved in Patient and Public Participation (PPI) aspects in research projects, and how you might think they could be addressed...

My voice becomes more hoarse the more I have done, so it tends to be a reliable sign that I need to rest.

Published papers thread for w/c 26th August. Twitter: Facebook: https://www.facebook.com/sci4me/posts/pfbid024hoENUkEBpdXx8bjqnxw37o3wBqsZfqviWcDVmJQysLu6FKeSF1v7o3r6HTqLk9Yl Bluesky: https://bsky.app/profile/scienceforme.bsky.social/post/3l35w7zrg452h Mastodon...

The journal being the Journal of Psychosomatic Research. The advisory board of the journal includes such 'champions' of good science as Per Fink, Judith Rosmalen, Michael Sharpe, and Jon Stone....

News in Brief post for w/c 26h August. Twitter: Facebook: https://www.facebook.com/sci4me/posts/pfbid0RjM6kRVT3RKjmSQmwCCMfsATm2pb1MXdVb1hLkq3jaCHnoG4gbyta3LudBBzLq2Al Bluesky: https://bsky.app/profile/scienceforme.bsky.social/post/3l33jzbokxn2a Mastodon...

Full title: Management of medically unexplained symptoms in children and young people: a secondary analysis of a 10-year audit of referrals to a Paediatric Psychology Service Abstract This study evaluated service use of children and young people with medically unexplained symptoms (MUS)...