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Sounds like QMUL was either careless or was actively trying to prevent an accurate analysis of individual patient outcomes.

I hope the Karl Morten team has data that will show GET to be useless/harmful. Then we can finally move on from CBT/GET.

Most patients, when they first get sick, have a bias towards trying to carry on despite the illness. They then painfully learn that they must reduce their activity levels. That's why I think that reducing activity levels is genuinely helpful. It is not what patients initially want or believe...

I think it would be good to test the things many patients agree are helpful based on their own experience (but which are not the things everyone "knows" to be helpful for chronic illness, like exercise or sleep hygiene). For example paying attention to sound and light sensitivity, or...

I think this thread demostrates that patients already have opinions on sleep. That suggests they would give biased answers in a clinicial trial of sleep advice. Maybe the bias is well founded because patients are right that the usual advice given is not helpful, maybe it is not.

Exactly. Afternoon naps are also good (in moderation).

Excellent paper. This will be very useful. I do find it strange that it mentions a need for high quality clinical trials of CBT/GET (this is what it seems to say). There is no special reason to believe CBT/GET are effective. The only reason this was believed were a) the existing RCTs which are...

There urgently need to be some sort of specialists that can treat rapidly deteriorating patients, those in need of hospital care for whatever reason. Contact with healthcare systems at the moment is so bad that it can really harm patients. If there existed such specialists we would also learn...

Help with cooking and cleaning could be helpful in cases where merely doing all of these every day is already overexertion or places a high burden on carers who may have other responsibilities like a job. This might prevent deterioration, or perhaps increase chances of improving in a year or...

The present diagnostic uncertainty would actually make sense if PEM is a fairly specific problem that can arise from a variety of illnesses. That would create a situation where patients with different onset stories and symptom profiles have PEM in common.

It's hard to see how precision medicine isn't going to be the future. You've got to treat the person as it is, not treat an average person that doesn't exist in the real world.

Also, I think history shows that once the biology of an illness is understood, psychosomatic models for that illness are abandoned because they were never more than a comforting and convenient narrative. One psychosomatic model of for example rheumatoid arthritis was patients tensing their...

There is is simply no good reason to believe that ME/CFS has any sort of psychological cause. Refer to the recent paper on the cognitive behavioural modle by Geragthy. The evidence is rather weak and contradictory. I am not 100% sure but I think the biological molecules that are typically...

This is of interest because it is reporting amazing results (it is however a rather preliminary study). https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0216079

I don't understand how someone can be severely limited by illness without fatigue. Every nontrivial illness I've had came with fatigue. Maybe the emphasis in "feeling tired all the time" is on "all the time"? Or is "tired" understood to mean a desire to sleep or rest, as in you do feel a need...

It all makes sense! The CBT/GET model is a patient blaming device and it works very well: no patient is without blame in this model, because anything they do is wrong. The solution for patients that do it wrong is of course CBT.

POTS can be diagnosed with a tilt table test. ME/CFS is associated with an inability to repeat the results on 2-day cardiopulmonary exercise testing. We don't know if this is unique to ME/CFS. In my opinion you don't need a 2-day CPET to recognize PEM. It would just cost money and be...

:D

Nice shark. Out of curiosity, do you know why they repeated the experiment with heated plasma? Was it important to prove that it's a biological agent?

That would fit with my case. Before a more definite onset, there was a prodromal phase lasting a few years with occasional weird symptoms, and that began approximately at the time I was given hepatitis B immunizations. It was 20 years ago so I don't remember the details unfortunately.