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I remember pointing out this piece in the thread on the Anomalies paper. I’m very glad NICE picked up on it.

Someone emailed Dr Walitt about the reason for choosing a single rather than a 2-day CPET and got this response back from the NINDS’ Office of Neuroscience Communications and Engagement on behalf of the NIH ME/CFS working group. Bolding mine:

Unfortunately Dr Fedorowski does not seem open to hearing about the flaws of the PACE trial. He has been blocking people who pointed them out, such as Dr Todd Davenport of the Workwell Foundation, and has hidden replies under his tweet about the article.

I’m surprised to see Dr Nina Muirhead sign this petition independently and not on behalf of Doctors with ME. Does anyone know why that is?

Unfortunate news from Janet Dafoe: “Ron Davis has been consulting with this group [Inspiritol].”

If it were the case then securing funding for biomedical research on ME/CFS should be much easier, as grant reviewers are researchers themselves. And presumably the authors wouldn’t have felt compelled to write this article if the situation were truly as they say.

For the past five decades, patients with myalgic encephalomyelitis (ME) have struggled against the stereotype that their symptoms are “all in their heads.” With ME now appearing in roughly half the cases of long COVID (LC), some researchers and journalists have recycled old mythologies about ME...

Just to chime in, I had a muscle biopsy (left deltoid) done in July and it didn’t show any sign of mitochondrial disease. The only findings were related to muscular deconditioning from being bedbound and lipoatrophy from malnourishment / being underweight.

Am I correct in thinking that this study provides experimental support for Fluge and Mella’s proposed pathological mechanism of endothelial dysfunction? They published a study on it this year. In any case, this study seems important on its own.

This statistic makes sense given that the substantial disability caused by ME/CFS, even at a “mild” stage, leads patients to not being able to work or only part time and thus to a lower income or none at all. Then, getting approved for disability benefits is often an arduous and long process due...

Summary thread on X from author Daniël Lakens:

Authors from the Technological University Dublin (Ireland) & the Eindhoven University of Technology (Netherlands) Received 30 Jan 2023, Accepted 04 Oct 2023, Published online: 29 Nov 2023 Abstract Two factors that decrease the replicability of studies in the scientific literature are...

Accompanying summary article in Medical Xpress: Our brains are not able to 'rewire' themselves, despite what most scientists believe, new study argues Contrary to the commonly held view, the brain does not have the ability to rewire itself to compensate for the loss of sight, an amputation or...

Tamar R Makin MRC Cognition and Brain Sciences Unit, University of Cambridge, Cambridge, United Kingdom John W Krakauer Department of Neuroscience, Johns Hopkins University School of Medicine, Baltimore, United States Department of Neurology, Johns Hopkins University School of Medicine...

This does not mean much - outside of Western countries, many researchers use mail addresses that are not affiliated to their institutions (often Gmail ones). In China I believe that 163.com is one of the largest email service providers.

I do not have access to the paper but I have been told that it was 50%. Yes, long haulers who have been there do not recommend it at all. ApresJ20, the main long Covid patient organization in France, does not recommend it either. Last year, as part of a small documentary on treatments for long...

Merged thread Besides the low quality of evidence (retrospective study with a satisfaction survey), Prof Lemogne is an associate editor of the Journal of Psychosomatic Research. He was part of Matta et al’s study in JAMA Internal Medicine that purported to show that long Covid was associated...

On paper, a red team seems to be a great idea, but in practice it could run into the same issues as peer review: the red team could be made up of like-minded scientists (not unlike choosing a journal to publish in that is favorable to the content of the article) and there remains the problem of...

From Living Proof UK on Twitter (“recoveree-led non-profit social entreprise promoting mindbody recovery from chronic pain & illness”): “Have just heard that the Mayo Clinic is advising patients that brain retraining is the only way to fully recover from Long Covid and that all patients who...

Observer investigation reveals UK Biobank opened its biomedical database to insurance firms despite pledge it would not do so Sensitive health information donated for medical research by half a million UK citizens has been shared with insurance companies despite a pledge that it would not be...