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It sounds much more sinister than that to me, especially for people who depend on welfare for all of their income. Clinicians can write anything they like on a patient's medical record, which they (the patient) then has to depend on as evidence for claims.

Yes, I wonder if it might be worth having a go at editing existing documents, and pointing up the areas that are problematic, lack evidence, etc. Whether anyone would actually take any notice is another question, though.

But you wouldn't begin with a phase 3 trial, surely? Groups usually start with phase 1 or 2 trials, with smallish cohorts. If the results looked strong enough, they'd use them to justify a phase 3—and at that point it should be possible to apply to major funding programmes. It might be that...

Yep! But I do wish someone would look at how to design apps to leverage the technology in consumer wearables specifically for Long Covid and ME. I think these could potentially pick up some of the changes in movement (and the ability to control it) that occur in both the rapid fatiguability...

I'd be quite prepared to write Is This For Real? in some of them. Obviously I'd put in something exceptionally rude first, but in the interest of avoiding a diagnosis of functional swearing-like-a-docker disorder, I'd probably edit it. ETA: Actually, I'd probably fill the whole thing in with...

As @Peter Trewhitt said in another thread (which I can't seem to find), there's the complication that recently diagnosed people may genuinely believe they have improved. If patients report that to therapists, it's not unreasonable for them to think that they've helped some people. Not...

I can't quote him exactly, but he mentioned starting with well-characterised patients with no potentially confounding diagnoses. From what I understand, there's a fair bit riding on this experiment for one of his hypotheses about ME and he'll only be able to scan so many people at this stage, so...

I think most sedative drugs can depress breathing. Your pharmacist would know more? I can't remember having anything like this connected to ME (though my memory's terrible!), only the air hunger of PEM. Now you've asked about this, I'm wondering if that's an opposite effect to sedating drugs...

That would seem to be the big "if".

I wish they'd tell us what bodily systems are dysregulated... ...and how they know this is happening, especially given that they don't appear to have read even the most rudimentary description of ME.

Hope the treatment goes as well as it can, Joan. However ropey it can be at times, there is at least an end date.

You'd keep both, I guess. But for someone who has ME/CFS symptoms that can be linked to Covid, I don't see why a qualified ME/CFS diagnosis couldn't be given. They need the same care, the qualification is only for research and statistical reasons.

I can see there may be an argument for this too, but I don't understand resistance to a single diagnosis of Covid-associated ME/CFS (or similar). Researchers who don't want post-Covid cases can still exclude them, those who only want post-Covid cases can include them, they would be tagged as...

It doesn't justify information about pwME being recorded via PROMs either. At review, patients should be allowed to focus on whatever is their main concern them at the time, whether it's the development of new symptoms, reporting back on attempts to manage particularly difficult symptoms, or...

That's a very particular way to present "people who recovered quickly didn't go to the doctor's".

This looks eerily like the 1960s/70s. If women complained too much, they were prescribed tranquillisers. I was given them for ME, my mother was given them because she had ulcers throughout her stomach, and a neighbour a few doors down was given them (without examination) for cervical cancer...

A very nice chap at one of the call centres (always cheers me up if I'm switched through to Preston, they seem to have some particularly helpful staff) explained that it's because it's decades old and doesn't really work. My PIP award has had to be extended twice—it expired in early 2022, and...

Me neither until it developed into actual incontinence, at which point they had to rule out bowel cancer. They seemed to regard really disruptive symptoms as being a bit like biting insects in summer—something you just have to put up with if you insist on leaving the house. I've had this...

That was the doctor's diagnosis, both before and after the intolerances were discovered, so yes—for better or worse, it's the term I use. People often manage IBS by making some dietary adjustments, and even where it doesn't solve the problem, it seems to help some.

For some people there are causes, it's just difficult to work them out. My IBS started almost overnight, but it turned out it was driven by losing the ability to digest two foods, cow's milk and potato starch. The milk intolerance was easy—I get stomach ache as well as bowel symptoms—but the...