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There was also this EBV-study by the research team of Katz in Chicago. They measured activity using a questionnaire before, during and multiple times after EBV-infection in participants who developed CFS and those who didn't. Post-Infectious Fatigue in Adolescents: The Role of Physical Activity...

Regarding the longitudinal studies, I seem to have missed this one by the research team of Crawley. Physical activity at age 11 years and chronic disabling fatigue at ages 13 and 16 years in a UK birth cohort - PubMed (nih.gov) It does not use the term ME/CFS but 'chronic disabling fatigue' ...

A Dutch study did the same thing but only up to 5 days after the exercise test. Here the actometer results showed no notable decrease before or after the exercise test. Impact of a maximal exercise test on symptoms and activity in chronic fatigue syndrome - PubMed (nih.gov)

Something similar was found in this study that used graded activity with activity meters. Patients were able to increase their activity levels but only for a couple of days. After 4–10 day, their activity level dropped indicating they were unable to keep up this level. Time course of exercise...

An old study from 2005, but they measured a couple of interesting thing regarding the EDS connection, which was not supported. They also tried to control for various factors such as physical activity.

Abstract Objectives: To investigate whether constitutional laxity of the connective tissues is more frequently present in adolescents with chronic fatigue syndrome (CFS) than in healthy controls. Increased joint hypermobility in patients with CFS has been previously described, as has lower blood...

I suspect it is this device, costing 140 pounds each: https://axivity.com/product/ax3

Impressive that they made 103,712 people recruited to the UK Biobank wear an accelerometer for a period of 7 days. Within 2 years, 273 participants were diagnosed with Parkinson's Disease (PD). An additional 196 of participants eventually received a PD diagnosis after those 2 years, forming...

An old study from 1998 by the research team of Benjamin Natelson. They measured activity levels before and after an exercise test. The exercise test had remarkably little effect on activity levels. There appears to be no anticipation or reduction of activity before the test and activity levels...

Abstract We measured physical activity after strenuous exercise in 20 women with chronic fatigue syndrome (CFS), compared to 20 sedentary healthy volunteers who exercised no more than once per week. Activity was measured for 2 weeks using a portable waist-worn vertical accelerometer. After the...

Thanks Yes sure, although I personally don't have any plans to publish this as a paper myself.

Yes, that is probably what it comes down to. Yet they keep saying that the symptoms are real.

Ok so they avoid activity but how does the suffering start, the extreme fatigue, widespread pain, and other symptoms? Avoiding things would probably look like an extreme anxiety disorder where people live reclusive.

Sorry did not find the actual Russian reports, only saw them mentioned in US articles and reviews.

Looks useful, thanks. Are you a hobby coder or do you have a professional background?

Thanks, that's an interesting one where fatigue is mentioned a couple of times. One article (on page 144 in the PDF) is on 16 healthy individuals who were strictly confined to bed for 70 days. They write: But this was only about one of the 16 participants. "The other subjects "also showed...

Thanks, I think this is useful to try to understand their reasoning. I've tried but I have a hard time understanding how it could work without the deconditioning part. For example: So the person misinterprets minor symptoms as being part of an organic illness, does not stop resting, is perhaps...

For what it is worth, the fear-avoidance model and deconditioning hypothesis that was applied to ME/CFS originated from pain research, mostly low back pain. It has been criticised there too. The deconditioning paradigm for chronic low back pain unmasked? - PubMed (nih.gov) The evolution is...

Yes, several people made the same argument on Twitter. But to be honest I don't really get it. Deconditioning was believed to be the middle step, the mechanism by which symptoms could arise without disease. Some argued that you can't just say to ME patients to exercise more without challenging...

Yes I think the Russian studies were the longest and fatigue was mentioned there but couldn't find those original studies (I suspect they were written in Russian). So that is a caveat.