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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...

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...

We have a Members Only thread on Mel Abbott here

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...

It's an interesting read. A couple of issues as examples: And a note about the relationship with the ICD:

I interpret that first sentence as meaning that it is up to us to change things, because there is little sign that the medical community as a whole is going to recognise the problem and fix it on their own. In fact, when we look at the actions of the UK Royal College of Physicians, BACME, the...

Abstract In Periodic Paralysis (PP), a rare inherited condition caused by mutation in skeletal muscle ion channels, the phenotype changes with age, transitioning from the episodic attacks of weakness that give the condition its name, to a more degenerative phenotype of permanent progressive...

:giggle: Gosh, that website is a multidimensional stuff up.

It also looks as though Matthew Phillips runs the Waikato Hospital FND Clinic. He's listed as a resource on the Functional Neurological Disorder Aotearoa website The FNDA website appropriates Māori culture: Ugh, nausea-inducing. And their metaphor of a kiwi-feather cloak falls down upon...

Matthew Phillips has a website 'Metabolic Neurologist' I despair. I repeat, he is the Director of Neurology at Waikato Hospital.

Matthew Phillips is Director of Neurology as Waikato Hospital. He's published on predictive processing (brain function). He also has a strong interest in ketogenic diets as treatments for neurodegenerative diseases. There's a 2021 paper here with Philllips as first author on a trial of a...

I've just read the abstract, but the variability of muscles with respect to muscle fibre type (both within muscles and between muscles) seems an issue worth keeping in mind.

Yes, it seems to me that people should have been asked what treatment they were on just a couple of days into the treatment. That would be more likely to pick out a problem in blinding. Assessing which treatment people believe they are getting even at one month would surely be confounded by an...