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I think I remember seeing some quoting the Evering et al. 2010 review on activity levels as a counter-argument against the boom and bust theory as it says: Source: https://pubmed.ncbi.nlm.nih.gov/20943713/ I didn't use this in the blog because I think this refers to variation within each group...

Thanks! I've added an extra caveat to the blog: EDIT: On Twitter some argued that the boom and bust cycle may be present in ME/CFS patients but only at the very beginning of their illness when they do not yet fully comprehend what is going on.

Ah lol yes that was not the intention. Can't figure out how to change the title, hopefully one of the moderators can help out? I briefly mentioned your idea for a study of ME/CFS activity patterns that might pick up on a PEM signature. I hope I didn't misunderstand and summarized it correctly...

The main point I wanted to make is that PEM and crashes are not caused by the activity pattern of ME/CFS patients which is not very different from that of healthy controls. They are a feature of the illness ME/CFS. The boom and bust theory often makes it sound as if the patients' behavior is...

Twitter summary here: 1) Boom and bust, another ME/CFS myth? In this new blog post we look at the evidence behind the boom and bust theory and how it originated. 2) ME/CFS patients are often said to have an erratic activity pattern, where sudden bursts of activity are followed by prolonged...

Boom and bust, another ME/CFS myth? People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are often said to have an erratic activity pattern, where sudden bursts of activity are followed by prolonged bed rest. This ‘boom and bust’ pattern is thought to be the reason why ME/CFS...

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.