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Agree, perhaps we should write 'more objective' outcomes.

They also write: I disagree with this. These findings are not robust enough to be used as endpoints in clinical trials.

Does not seem to mention the issue of blinding for non-pharmacological interventions and that in these cases objective outcomes such as actigraphy or employment should be used (alongside symptom questionnaires). I think this is much more important than including under-represented populations or...

Another paper by Chalder and colleagues compared ME/CFS with rheumatoid arthritis (RA), seronegative spondyloarthropathy (SpA), and connective tissue disease (CTD). The rheumatic diseases had a mean for all or nothing behaviour around 8 and ME/CFS patients a mean around 10, so similar results to...

For a fair comparison, one should control not only for age and sex but probably also for fatigue (or some other measure of disability).

One thing that wasn't mentioned in the blog is that boom and bust is often equated with all-or-nothing behavior as measured with the Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ) subscale which contains the following 5 statements: I tend to overdo things when I feel...

Yes I remember that some studies looked at this and for example only included the weekend if it showed a similar pattern. The van der werf study had 277 patients and observed them for 12 says. So even if the boom/bust was only present in a minority over this period, a reasonable sized-effect...

Thanks, it's actigraphy data from the PACE trial at baseline, but they don't report anything about variability or a comparison to healthy controls. They just categorise patients into different groups based on their activity pattern. They say that 30% showed 'boom and bust' pattern of activity...

Just to clarify, I don't think there is a problem if people use boom-bust to describe their pattern of crashes and PEM following (too much) activity. I mainly wanted to emphasise that this is not due some irregular, symptom-producing activity pattern than ME/CFS patients have compared to...

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.