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Your last point is why I wonder whether the general principle is the only thing we really can evaluate reliably. What matters is PEM. Avoiding PEM significant enough to stop someone doing things they otherwise could is the object of pacing, and anyone who's still getting it isn't pacing...

It sounds political to me, and it's possible there could be reasoning behind it. For instance, if they happen to know there are going to be big bucks available for a series of projects to redress the historic imbalances where research was always based on male bodies because female ones are too...

I'd guessed it's probably not entirely different to arts funding. There are Funding Priorities and there is Work You Want To Do, and despite them looking very different it's perfectly possible to make the twain meet. A lot of it is about the way you present your case.

I agree we have quite enough hypotheses, but I wonder if he means (a) we need to test some of them properly, and/or (b) hypothesis-based work is what gets funded, so to be successful we need to design our studies with that in mind.

I agree that it'd be great to study this, but one of the stumbling blocks is finding a reliable way to identify when rest is needed in order to avoid getting even moderate PEM. I've tried various strategies for working it out, but always come back to instinct as the least unreliable. Heart rate...

Oral magnesium definitely affects me: muscle pain that has me staggering round the bedroom trying to find a way to get rid of it. I've tried several sorts of magnesium over the years, because I'd either forgotten it was a supplement caused the screeching muscle pain or which supplement it was...

Thank you, it's a really good read. Definitely one to bookmark and re-read next time I can't get the words out myself. British folk do call this the blind spot, so you were absolutely right!

The Twitter thread also gives a link to the presentation, which is stored on a Google drive. There's no indication of whether it's been released with permission, but it does look as if it was made by the organisers; the camera is on a tripod and the sound is recorded properly. I hope it's okay...

The last part of this is one of the reasons I think wearables are viable. Yes, of course they're going to vary by brand, operating system, algorithm set, etc.; and yes, it's difficult to know whether they're recording quite the same thing on people with different movement styles and physical...

Organisers often seem to try and cram too much into these conferences. It's great to hear some of the researchers speak in person, especially those we haven't "met" before, but there's more than one way to provide updates on the avenues that are being pursued. Sometimes a short written article...

That's a great photo. So simple, yet says so much. Even after all these years of ME, I can't begin to imagine what it's like to be severely ill. Almost never feeling the rain or the wind, not being able to experience the freedom of floating in a pool of water? I hope there is some hope, and soon.

I read this as being about what goals the services should be developing—which would be fine, and appropriate—but like you, I worry when treatment plans are mentioned. There are no treatments, and if we can't be honest about that from the outset, both the clinics and the study are set up to fail...

When it comes to assessing the services, I wonder if there are any useful models in other NHS clinics where there are few or no curative or disease-modifying treatment options? I'm thinking of the lipoedema clinic I visited. For most patients in the early stages it was a diagnose-and-discharge...

Well, that fills me with confidence!

I agree, the thing about pre-illness isn't even required. "PEM results in a marked reduction in activity", full stop. Or better still, "PEM necessitates a marked reduction in activity".

I've just seen on the calendar that I'm due my 5th next week. Pfizer's the only one I had trouble with (it seemed to trigger an arrhythmia that went on for months before vanishing as abruptly as it had appeared), so I'm rather hoping it's not that one. But if it turns out it is, I'll explain and...

:rofl:

This is key. I really hope the study will acknowledge that the vast majority of the patient base is effectively shut out of NHS specialist services. I'm 47 years into my illness, disabled enough to qualify for supported housing, benefits, and an NHS-prescribed wheelchair, and I've never seen a...

Usually the approach seems to be to start with the assumption that patients have access to the aids they normally use. It doesn't matter whether these are small gadgets or highly specialised equipment, it sets a baseline. It also gets around the fact that not all the aids people use are...

They know that? How? By whom? When? What was their evidence base? What are "third wave" therapies? Oh, sorry. I thought I was marking my nine-year-old cousin's homework for a minute. Wrong page.