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I am not sure that this is true. Many people are too ill to carry out essential daily activities and have to rely on carers to help them to do just these tasks, much like people with ME. It would make sense that they refuse to participate in studies because it would be too much of a burden for...

It hinges on whether researchers will adopt this definition of long Covid. Since it is operational (it comes with an easy-to-use score) and is based on a large scale and well done epidemiological study from the NIH, I am inclined to think that researchers will prefer it to the WHO’s vague...

I disagree with your premise. The RECOVER initiative may be producing results too slowly, but such an epidemiological characterization of long Covid is absolutely necessary and was long awaited. As the WHO’s poor definition of long Covid has proved, the quality of a case definition substantially...

Indeed. To me, this definition seems to delineate two major presentations of long Covid: people with PEM and autonomic issues, and people with respiratory and olfactory symptoms (the latter being most likely those with organic sequelae). The next step, in my view, would be to analyze to what...

Interestingly, non-long Covid ME/CFS patients diagnosed per the IOM or NICE criteria would score at least 11 points: PEM (7), brain fog (3), fatigue (1) — and most likely dizziness (1) and/or palpitations (2), in which case they would be classified as long Covid cases —.

Summary thread on Twitter by a lead researcher within the RECOVER initiative that explains the methodology of the study: They developed a score (using LASSO) to classify participants as having long Covid or not based on a set of 12 symptoms. The score for each symptom accounted for the...

I suspect that they used the DePaul Short Form PEM questionnaire which, as we have discussed in the past, is quite flawed.

I don’t have access to the article, but according to the trial registration, it was meant to compare the effects of cocoa extract (flavonols, specifically) vs a multivitamin supplement on cognition. Since the abstract doesn’t mention cocoa extract, it would seem that the results of the trial...

This seems to be an interesting European collaboration between the German startup selenOmed, which is a spin off from the Charité hospital founded in 2017 and focuses on selenoprotein P, Prof Carmen Scheibenbogen’s team at Charité Berlin, Prof Elisa Oltra’s at the university of Valencia and two...

Interesting to see this coming from French dysautonomia specialists (the university hospital Lariboisière is the only one in Paris that specializes in this field, to my knowledge). Prof Natalie Kubis said in late 2020 that she had not seen dysautonomia such as POTS in long Covid patients — it...

Reactions from experts collected by the Science Media Centre (SMC): https://www.sciencemediacentre.org/expert-reaction-to-study-looking-at-an-artificial-sweetener-erythritol-and-cardiovascular-disease-events/

“Atypical” ME is an oddity of the international consensus criteria, which define it as: “meets criteria for postexertional neuroimmune exhaustion but has a limit of two less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.”...

Seeing the situation from France, I would say that the two major contributing factors to the success of ME/CFS advocacy in Germany have been garnering political support and media outreach. Some patients seem to have some connections in politics and in the media and they have been using them...

This made me think about fiscal optimization / tax evasion. Whether trialists do it knowingly or not, it is as if they were jurists or lawyers at corporate firms who are exploiting loopholes in these evidence review frameworks, such as GRADE, to avoid having their trials downgraded to a “very...

Access to individual patient-level data (IPD) of randomized clinical trials (RCTs) increases the reproducibility of research, facilitates exploration of effect modifiers, and leverages research investments beyond the original research question. This study aimed to describe access to IPD of RCTs...

Journalist Martin Rücker, who published snippets of the draft article spearheaded by Peter White about the “eight errors” made by NICE in the elaboration of their ME/CFS guideline: “What I don't understand: IQWiG recommends investigating the potential benefit AND harm of GET at MECFS in further...

Merged

From the press release: On the recommendation for CBT: On the recommendation for GET: Unfortunately IQWiG also call for more trials of GET:

A critical take from epidemiologist and data sleuth Gideon Meyerowitz-Katz: Edited to add: a counter-argument from epidemiologist Deepti Gurdasani:

They could always collaborate with Norwegian and Danish functional disorder researchers like Flottorp, Wyller, Fink et al.