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I'm sorry to be negative, but Dr Luis Nacul heads up a service in Canada that is a long way from what we would want a specialist ME/CFS service to be. We've discussed it elsewhere on the forum. The service promotes unproven therapies including Graded Activity Therapy (it's just not called that)...

Clinical trials says So, it sounds as though recruitment is complete.

I found the following: It motivated me to find out if the authors controlled for sex in the temperature studies. It looks as though they matched the CFS group with the controls on age and sex before they did the analysis of activity levels and temperature. That's good. What I realise now...

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 are waiting until 'the answer' pops out of that discussion. :) When it does, you can be sure it will be pasted here.

There is some discussion and analysis of the Chromosome 20 region on the Alphagenome thread

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.

Quoting ChronicallyOverIt's post from the GLP-1ra thread about this paper.

We have a thread for the paper Utility of Glucagon-like peptide 1 receptor agonists in Mast Cell Activation Syndrome, 2025, Afrin, Blitsheyn et al

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.

We have a thread looking at the evidence about and experiences with GLP-1ra drugs on ME/CFS here.

Reckon we could get a New Yorker article about Cochrane and the Larun et al review? (Mostly just joking)

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...

No convalescent controls? Edit to add: 35 people in the acute-Covid-19 (hospitalised) +

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...