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I guess being discharged by a service would mean the treatment is finished? That's common and happens for various reasons. An ME/CFS clinic not taking on someone because they're too severely ill to attend might be another. The main problem might be that most pwME don't have a clinician in the...

I think it is, and that it was phrased this way for political reasons as you say. It sounds a bit desperate, so I'm not taking it very seriously for now. I can remember it being spoken about, but I'm so close to retirement age that I didn't really follow it up. You may well be right, though.

Thanks, I'd forgotten about that. I'm thinking of the more recent, much slippier language.

I can't even remember what MUPS means. Medically Ubiquitous Parrot Symptoms? (I can feel a new word game coming on.) But seriously, I can't remember reading anything explicitly challenging this characterisation. The Nice guideline says "Diagnose ME/CFS in a child, young person or adult who...

I suppose you can't blame them, since the alternative ( :eek: ) is to look at the causes.

An important point. I'm not sure about using reversible (they usually speak of improvement), but they present it as a treatment. They take care to avoid all curiosity about what happens after the treatment, of course.

Even if the organisations gave permission, it's still not really adequate. Prising open difficult emotional issues and just walking away should always be avoided, especially with young, sick people. Safeguarding means taking precautions to ensure the safety and wellbeing of participants, and...

PS: many, many thanks to David and George too. This is an incredibly useful exposition of the background to the story.

Thank you, @JohnTheJack. I did a bit more work on it, basically using the Word editor to remove all the 'um' type words, and all the instances where words were repeated. Some of the repeated words do appear in the video (e.g, someone saying "I ... I think"), but quite a few instances might...

Good comment from Dr Speight.

Yes, I've just booked the next instalment. It's crazy they're not making it more widely available, given that sort of death rate. :arghh:

Yes, my Fitbit wasn't ideal for swimming, it couldn't reliably tell the difference between backstroke and freestyle! :laugh: But I've had two others since (the most recent is Apple Watch, but I also had a very cheap device before that) which were much more accurate. Some devices are better at...

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...