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The drive to deny reality is strong in the people behind this. I wonder what drives them.

Rather than trying to find the best name for a subjective symptom, wouldn't it be best to focus on describing the impact of the illness? The goal is to be understood, right? An article with patients describing their day and why they do things in a certain way, don't do things, and explaining...

The assumption is that it's always possible to build tolerance through graded exposure. This is not true. It can also lead to increased sensitivity and worsening. It can also lead to a situation where there is an illusion of improved tolerance when in reality what has happened is a change in...

Would the patients agree they are being empowered? Have they been asked what their needs are? Are they even allowed to speak? Or is this just an empowering of professionals?

On its own it's not enough. But if there is apparently solid evidence replicated in many different contexts and society still does not believe it it could mean that there are problems with the quality of the evidence that I can't spot.

The PACE trial was superficially credible to many professionals. That shows one cannot rely on prestigious journals, or the fact that many professionals believed the results. I guess the only way to be reasonably certain that something is real if the idea/claim is widely supported by society...

Or maybe it is the other way around, that people who are in poor health are more likely to experience sexual assault because of the vulnerability that this represents. Predators pick on the weak and vulnerable. Illness doesn't begin with a diagnosis and subtle symptoms can be present years...

I don't need a person that tries to assume the role of benevolent authority figure that explains my feelings, my levels of stress and its presumed causes, how to manage rest, etc. Because the advice is worse than my own, the interpretations are often very wrong, and I can ask myself when I can't...

Clearly the fact that long covid patients are normal human beings that suffer from stress and worries is an unusual phenomenon that must be studied further.

We should separate receipt of disability benefits from diagnosis entirely. Diagnosis should be purely about trying to understand what is wrong and how to best manage it. These horrible dynamics come in part from diagnosis being required for receipt of disability benefits and other kinds of...

It's all a reflection of how patients are treated by society. Saying I feel shitty and don't want to do this thing isn't accepted. You just get labelled as lazy, lacking willpower or being depressed and then bullied or pushed around. Then you feel even worse and it also interferes with the rest...

I can often tell very quickly if a person understands ME/CFS or at least fatigue. Immagine going to a professional to solve a problem and after 30 seconds understanding without any doubt that the other person has a false mental model of everything you just told them. Inconceivable? No, as...

Human beings tend to hold beliefs that feel good and give them strength. The physiological explanation is a defense against disbelief, the enormous injustice this represents, and the small aggressions that patients are subject to. It's also a reaction to desperation and lack of control. If the...

I remember a turning point where I began experiencing episodes of exhaustion, malaise, poor sleep. I consider that the onset of clinically significant illness, but I believe that 1-2 years before that, I was already showing subtle symptoms. The most important symptom was, occasionally and...

What is Ryback's work showing? The same two age peaks or something more? What do these two age peaks suggest? What are the hypotheses on the reason for the peak in adolescence? Brain maturation associated with becoming an adult? Sex hormones? What other illnesses show two age peaks?

We don't know which method of selecting patients gets us the closest to a pure cohort. The strength of disease signals that emerge from each individual study can tell us something about how good the patient selection was but we don't know what exactly is being selected for. An inconsistency...

This sounds very interesting and aligns with my impressions. I wonder if the problem with unreliable, biased studies in psychology (and other fields) is the result of desire or pressure to conform to the values mentioned by Hughes. In this interpretation, the obstacle to doing good science is...

Maybe riding a bicycle is a form of exercise that is better tolerated than others, due to the hemodynamics? It is something that has surprised me when I did a stress test on an ergometer. Walking seems like it would cause greater orthostatic stress than cycling. Maybe the stronger use of leg...

Presumably some prejudice against the illness stems from confusing descriptions of exertion intolerance with unwillingness to tolerate the stress of ordinary activities of daily living. If the patient, before describing their intolerance of exertion, does not specify the corresponding activity...

Horrific testimony that we live in a society where expressing in how much pain you are is (almost?) considered a psychological disorder, at least by some. The expression of pain is of course a request for help. Labelling requests for help a dysfunctional behaviour is disturbing. What does this...