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Do patients need CBT? I think I would have been able to adjust better to the illness had there been someone to tell me this is a real and serious illness that I need to learn to live with. A lot of depression could have been avoided if other people had been more accepting of my illness instead...

According to this metric I estimate I would be somewhere between moderate and severe, and more towards severe. I recently measured my steps during a walk and 2700 was enough to trigger a symptom exacerbation lasting several days. That was probably also the result of similar exertion on previous...

An excellent example of eminence-based medicine. Nobody's reputation will be hurt if they don't agree to it.

There's a preview of the book and the content seemed to be okay. The author seems to describe patients more on the milder side. I'm sure it's not perfect but if the average healthcare worker had similar views we would be in a much better position. I'm not sure about the claim that some...

This needed an explanation of PEM. Without it, there is the risk of symptoms being attributred to deconditioning when they have nothing to do with it.

To me seems to be evidence saying that diagnoses based on vague subjective feelings are very unreliable.

I have often heard about various tricks the clinics of this kind use to make the treatment look successful. Presumably they do this to survive, because of the expectation set by the PACE trial and other studies that CBT/GET are effective. A clinic without results would simply be closed. For...

@Jonathan Edwards what do you think about this?

How much of an effect can internet CBT possibly have? I think the most likely result is no meaningful effect, although it could pressure patients back to work sooner, which could also be counterproductive.

I also believe that orthostatic intolerance is generally only recognized after a certain severity, when there begins to be an obvious connection between being upright and feeling worse. The underlying problem that causes the orthostatic intolerance can perhaps exist long before this point and...

I think activity measurement could be more accurate than time spent upright, although still flawed due to the inability to detect cognitive exertion and symptom burden.

Although it varies, in the last week I have spent relatively little time in horizontal position and still consider myself seriously impaired. I've had periods of >50% time spent in bed too. I don't think the difference between these bad and the current good period can be adequately measured in...

http://apps.chiragjpgroup.org/catch/ under all individual results. In one of my earlier posts there is also a raw data file formatted by me if I remember right.

Without an adequate control group, it cannot be safely assumed that the treatment has any effect. It appears that the authors have no idea what they're doing.

To me the problem seems to be not in the concept of primary pain but in people being willing to accept very low standards of evidence for some treatments like CBT. And also that medicine is so heavily driven by commercial interests, meaning that most of the attention is on finding treatments...

The one ornitine transporter gene identified seems interesting. It's related to the urea cycle, which other studies have found to be abnormal (I can't recall the details, I think at least one metabolomics study reported this). The urea cycle removes toxic ammonia from the body. How many would...

I seem to have discovered something interesting today. I don't consider myself sound sensitive but I felt so much better resting while having my ears covered. I'm guessing that this removes processing work for the brain and allows it to recover better from exertion.

That fatigue is independent of infection severity seems unintuitive. Could this be due to inadequacies of the Chalder scale? Or is this a hint that fatigue is due to a somewhat different process than the infection, triggered by it but then continuing on its own? Anyway I'm troubled by the...

I was going to say yes it probably helps if they're no longer sick. The devil here is in the details as "not sick" is apparently often defined in an artificial way. For example in some statistics a covid 19 patient is considered to have recovered if they survived 2 weeks and isn't in a...

The funny thing about bias is that people having it can be totally unaware of this fact. To them it can be the norm. I don't doubt that the BMJ selected the best papers on CFS. I just think they were neck deep in their own biases when deciding what made these papers the best. I doubt they...