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The denial is not just unfair but also prevents learning from failure. Someone who doesn't admit that the treatment went wrong may repeat the same mistakes again with another patient.

I would like to add that we do not need to have clarity on the illness to justify that a serious and credible effort is made to help us. How exactly that looks like is subject to debate but there should be no debate that people that are as ill as we are deserve the same access to research and...

I'm so sorry to hear this.

This is a nontrivial health problem even if it's not chronic fatigue syndrome.

I'm so sorry :(.

We can also abandon the term "neuroimmune" I think. The immune system may well be doing something in the brain but we don't know what. There is no evidence as far as I know for "postexertional neuroimmune exhaustion", which would be an exhaustion of the immune system in the brain following...

With this and the relevant ME Action survey as well as a few discussions here and there it feels like the larger community has assessed the situation concerning illness criteria and concluded that the direction things are going is fine. That direction being away from criteria that don't require...

I'm not so sure. People make mistakes when they are fatigued. I know that I'm fatigued but I don't always realize that I'm too fatigued to be doing something until I make some mistake and mess up. Being well aware of my capabilities and state of health at any moment is a skill that can and must...

That is exactly what I suspect happens often in ME/CFS and perhaps other conditions. People get used to feeling a certain way, forget what feeling normal was like, internalize disbelief/non-understanding from their social environment, they stop working or doing much, and don't often see other...

Unless I'm misunderstanding something, illness consequences is conceptually very similar to handicap. Two terms for similar things. Unsurprisingly, the closer two things are conceptually, the more tightly they will correlate, or "predict" each other.

There are graphs of worldwide research funding here https://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

I am interested in understanding how people who believe in psychogenic illness think. This is an interesting study. It appears to show that a lack of medical explanation for pain, incombination with a diagnosis of CFS, has the following effects when compared to a patient with medically...

@Jonathan Edwards I had this again last night, first with a sensation of being pullled towards the feet end of the bed and up by some invisible force. Since sound and perceiving the motion of self in space are both related to the ear, this would make sense. And again this happened after a light...

Regarding the prevalence of severity. Consider that the patients with characteristics that make it easier to be diagnosed are likely to be overrepresented in especially non-random sample but also random sample studies. I believe that a sudden onset, greater illness severity, documented or...

I googled "causes of school refusal" and checked Wikipedia. These bring up long lists of various causes, all of them psychosocial or psychiatric. The possibility of other illness is not seriously considered. Presumably it is assumed that illness is rare and generally handled well by doctors...

I suspect an important reason for young people going undiagnosed is that they seek help but are given harmful advice, most likely in the form of a diagnosis of depression or some psychological explanation for school refusal. Or they're just repeatedly told that everything is fine when it's...

Maybe they have repeated negative encounters with healthcare professionals and eventually just give up. A negative encounter can just be a doctor assuming that it's stress related and trying to reassure the patient that everything is fine. Or the problem is right from the beginning seen as...

The methodology will be as poor as is necessary to deliver the desired results.

Re point 2, the study has been 10 years in the making. The IOM definition came out 5 years ago. The study operationalized PEM in a more sensible manner than in one of his earlier studies which is good. These kinds of studies are never going to be highly accurate without a very reliable...

The recent paper by Hanson had a discussion on acyl cholines which were found to be decreased in ME/CFS and which could be related to brain and autonomic dysfunction.