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I was also slightly surprised that Walitt et al was quoted as evidence for known physiology!!

Thanks for that. In a way the response not so much expects too much but misses the central point. I guess I wrote it for everyone, including the very familiar, but yes it 'talks' to that audience. The response paper includes this sentence: The case histories of patients who have been harmed...

The open response document seems to focus on what is known about the pathophysiology of ME/CFS. Unfortunately, nothing clinically useful is known. Even if we were sure of the physiology data we still need studies showing that applying the inferences from such data to clinical care is beneficial...

Jo Cambridge used to bring bottles of Fairies dust essence back from Barbados yeas ago. Jack Iron I think it was called. Capable of combustion without the gunpowder. We often had happy thoughts with it on a Friday afternoon meeting but I don't recall anyone leaving the ground. Re-edit; I had...

To be honest, I think it would be a disastrous mistake, at best a distraction and at worst, much worse. Remember that this is how the PACE people got their bandwagon going. It leads to the expectation 'you had the treatment, now get a job'. The irony is that healthcare doesn't actually work...

Hydroxychloroquine will not change autoantibody levels.

I know that I come across as a bit hard hearted at times. And I have always suspected that my mum had my ears done and that my real dad was from Vulcan but when I wrote the Qeios piece I decided to publish it after all my doubts because I did think I had heard some things worth trying to...

Now that is what I call nous psychology. Like it is.

Yes, I think that is how the message has come through to me over the last ten years.

Maybe more important than this is the mainpoint I was trying to make in my Qeios piece - that management should be based on evidence not theory. If one physician says the patient should be treated this way because they are in PEM another physician can say, 'but that's your theory, my theory is...

Or retrospectively, in a cohort not biased by looking for NLC, i.e. the ME Biobank at CureME. If it has not been used it would be a good sample - ME/CFS, normals and MS all documented and available blinded.

I don't really follow that @Yann04 because 'PEM' is just what we call the time pattern of symptoms. It isn't a 'thing' that causes things in the sense that we know what it is. Having too much sensory stimulation may well cause PEM but for these very severe patients the account we hear is that...

Moved posts I don't think PEM is an explanation. It is just a useful specific term for the way doings things can lead to symptoms like pain in ME/CFS. I am not sure this is actually PEM though. Being intolerant of stimuli in severe ME is an immediate thing as I understand it. It certainly is...

It's certainly the first time I have seen the blind inspecting the blind using Relativist epistemology and Critical Realism ontology. Maybe if you can't use bifocals that's all you can do?

It is all muddle of semantics. Most doctors do not really understand the difference between a causal disease category and a syndrome category. When the time comes that we can answer questions about cause for all cases then terms like ME/CFS or CFS or fibromyalgia will have disappeared anyway. At...

Except that these people are banging on about tired old ideas that all of us have looked at and seen the shortcomings of. I don't see any new ideas in any of these twitter threads - I see sheep wandering off to nowhere in particular and taking large numbers of dollars with them. Science...

I don't think we have any scientific evidence base for this. Changes in urine metabolites may be completely irrelevant. Apart from anything, most people with ME/CFS do not spend half an hour on an exercise bike on any day of the week!! I think this is just bullshit from BACME type people -...

It is absolutely routine in specific circumstances. For hypertension you measure BP without medication and then with. In RA you measure CRP without medication and then with. In diabetes you measure blood sugar without medication and then with. In infection you do cultures without drugs and then...

My personal knowing refers to the UK equivalent, who has sat on just as many eminent committees and written just as many papers - and regularly he would tell me about some new discovery about dysautonomia or POTS by friends like Peter Rowe. I was otherwise meaning knowing in the sense of having...

And I guess I should say that I base my viewpoint on knowing these people very well personally, to the extent that I was asked to take over the main UK clinic when the relevant person retired. My working life was steeped in this stuff.