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It's about avoidance due to the (in their mind, incorrect) fear a relapse could occur, not stopping an activity because it's somewhere between unpleasant like hearing nails on a chalkboard and torture. If they want to advocate for patients to engage in self harm, they're free to do so and it...

Fukuda allows a wide variety of illnesses, but the actual composition of the cohort is maybe highly reflective of the place of recruitment. Maybe the authors are recruiting patients from clinics where there are much more patients with active viral infections compared to other places.

I'm not doubting that it is normal in the circumstances. It seemed an interesting observation and I wanted to know if other people were experiencing this or not. I'm not sure if aversion is the best term (English is a second language for me). At some point the activity begins being perceived as...

I don't know why. I'm describing what I'm guessing is a popular view. Maybe I'm wrong. I don't have insight into the collective mind of the medical profession, or that of the decision makers who are concerned about cost efficiency. If cost efficiency is considered important, and it's calculated...

An obstacle appears to be: For a doctor to justify seeing patients with ME/CFS, some useful treatment or diagnostic procedure needs to exist that can be used. But there is no proven treatment or generally useful diagnostic procedure. That's probably why there are so few specialized clinics...

A symptom that is important for me, but is hardly ever mentioned, is aversion to activity. It is something that develops as I become more exhausted from doing that activity and continue despite it. At some point I notice that an intense dislike of the activity is slowly growing, even if not...

To put things in perspective, my last bad next-day crash was last summer because I avoid the kind of activity level that is likely to cause them if possible. I've had many smaller next-day day crashes in that time, and also many crashes from cumulative exertion over several days or weeks. Or so...

This looks like a study with some effort and thought behind it. However the interpretation that this is a problem of symptom processing seems a little dubious. It seems just a variation of "we don't understand it, therefore it's psychological" with different language being used. I would have...

In my case, which was initially nothing worse than having a few bad days per month, a good clinician would have been able to recognize a pattern of patient attempting to maintain normal levels of activity, succeeding for days/weeks, but inevitably having a crash after some time, no matter how...

In the minds of many researchers and clinicians, CFS is a state of unusually strong or persistent fatigue. And some of them then oppose research into the illness on the grounds that this definition is too vague. They aren't wrong, but the nonsense is not the illness per se but their own...

I have tried the following: 1. Spend almost all of my time during the day in a beach bed with raised back rest. In terms of horizontality and orthostatic stress, this is about halfway between sitting and lying on a bed (maybe a bit closer to lying in a bed). 2. Spend half of the time in bed...

What's a natural way for a person to turn into a grifter? Maybe starting with a treatment that really works for some highly selected patients, then finding out that good money and careers can be made even with false claims of the treatment working for other patients.

I think I have understood something important that could explain why there exists two groups with very different views on ME/CFS that each think they are right. The more a diagnosis is unspecific, the more it matters where study participants are recruited from. ME/CFS diagnosed with Fukuda...

It seems naive to assume that the effects are due to meditation when monks likely differ in so many ways from the average person, some of which known and controlled for, and others unknown or uncontrolled for.

The closest to a useful questionnaire would be something that attempts to work out how large the energy reserves of the patient are, and how well they hold up over several days/weeks at a constant level of daily activity. I can do a lot of activities, so am technically limited only mildly...

It's typical for me to feel relatively good hours or days before crashing. The feeling good is the emotional component of a "be active and get things done" state of mind. The increased brain activity is not tolerated for long. It would be interesting to try and measure this phenomenon and...

We just assume that questionnaires are measuring the intended things but it's not difficult to see that patients often do not have an accurate picture of their own level of disability. This distortion can be wishful thinking. Chronic illness is scary and we don't want to face reality. This is...

Chronic illness is not the ideal moment to work on becoming a better person. I would argue that this idea has medieval christian origins and the enthusiasm for therapy targeted at the group of chronically ill people for the purpose of treating real or imaginary personality defects is simply a...

If a diagnostic construct is associated with lots of other things maybe that construct lacks specificity.

If they can find a good patient, carer of family member for the role, then there is nothing wrong with 4 hour sessions. It will help speed things up. The 4 hour sessions will exclude many patients but involving many patients isn't the goal here.