They say there were lower wrist temperature amplitudes in the CFS group. That's interesting.
But, wouldn't wrist temperature be highly susceptible to environmental conditions? As in the healthy controls going off to their squash games and spin classes and even their morning hot shower might...
I assume the evidence is that one SNV that they found was associated with subjective fatigue severity in the control group? I haven't read the study, but I note that they didn't say anything about the SNV in their own CFS sample, only that it had been associated with CFS in the literature...
We have a thread discussing the planned CFS for the Scottish Highlands
Scottish ME/CFS Clinical Service Provision
Some posts made on this thread have been moved there.
The authors seem to be saying that MCAS can present in all sorts of ways, and that all sorts of drugs may or may not be useful in particular cases. That makes it very hard to prove or disprove MCAS as a clinically useful entity.
If you can give us an update on where things are at now, that would be great @duncan.
I didn't know/remember who Phil Baker is. This is from the American Lyme Disease Foundation, they are clearly fans. Looks like Baker retired 2023. The situation with Lyme in the US is hard to follow.
It is sounding pretty hopeless. I'm not sure what a willing GP or hospital doctor is supposed to take from those two paragraphs about people with severe ME/CFS.
That looks like an incitement for medical professionals to push through with whatever programme they think is right, regardless of...
I've been reading a couple of genetic studies on hEDS.
Clearly, things are complicated. I think there is almost certainly a small percentage of people diagnosed with hEDS who have a monogenic disease that would fit under an existing or new EDS group. There are probably some people with a...
To the contrary, thanks for writing. I guess reducing the use of words like quackery and pseudoscience would help when communicating about these terms, but, I'm not sure it would be enough. I suspect that raising questions about the validity of the labels is at the core of the problem.
I'm...
I've thought a lot about what you have written.
I've searched this thread, and no one has used the word 'ridiculous' to describe the MCAS, hEDS and POTS diagnoses. I don't think anyone here would want to suggest that a patient believing in any of those diagnoses is stupid or they are to blame...
Yes, but surely some can see that the woo makes the whole profession look really bad? If you are concerned about your reputation, wouldn't you care that others are undermining the respect and trust that being a doctor used to qualify people for?
I'm not sure if you read my paragraph? I don't...
One of the biggest problems we have is not with the inability of the lay person to identify the pseudoscience. (And frankly, I agree that it's usually pretty easy to make a good guess about what is and isn't pseudoscience, for a bullshitometer to turn red, although being completely certain is a...
I don't think many people have a need for a list of diagnoses. What people are seeking and needing is an explanation for their symptoms and the respect and the hope for a successful treatment that comes from that. That's what the pseudoscience outfits are catering for, when it comes to the...
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