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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.

Yeah, I needed either a downstairs loo or an upstairs kitchen! The annoying thing is that it was a Victorian house that still had a big outside closet on the end of the kitchen offshoot, but although the water supply was still there, the toilet had been removed long before I moved in. I wanted...

Mine did make it significantly harder to get anything bulky up the stairs, including the vacuum cleaner. If I'd needed a new mattress or piece of furniture, I'd probably have to had to get an engineer to take the chair off (the call-out fee alone was £120). It also made it harder for other...

I can see why he wants to describe it properly. It could be important, and if it turns out he's made a fundamental discovery, he deserves to get the credit. But why not just wait for the conference? He could have used it to give the heads-up that he may have found a link between ME and PASC and...

Odd, isn't it? I do understand it, given the history and the fact that those running it might be ill and have no capacity for direct engagement, but it still feels ... unusual.

To me, the most interesting part is the afternoon of Day 1. It's still three and a half hours, but there's about a half-hour break. What I've done with online conferences in the past is to listen to the first few minutes of each presentation, and see whether I'm taking in what the person's...

The budget end date was 2019. Might that suggest that most of the practical work ought to have been completed by then and presumably the rest of the period was analysis and reporting? TBH, I don't really understand how research funding works.

That's a heck of a journey in a quarter of an hour! I do hope it's a bit more than a theory. We've had enough of them to fill Beaufort's Dyke and we're still not much wiser.

That is really disappointing. It would be more understandable if a smallish patient charity couldn't justify the processing costs for another 12 people until they knew whether it was a worthwhile avenue, but the NIH?

Hear hear! It's like expecting to teach someone to drive from a book. I meant to mention this last night. This focus on fatigue and brain fog always seems a red herring to me, as we're almost never clear of them even on our best days. I'm not convinced they're as meaningful as doctors seem to...

It is so hard, and few of us ever really get it right. But I think you do eventually develop a sense of which signals you have to pay attention to, which helps navigate it a bit better. I tend more to think about how today has actually gone, so that I can plan what not to do tomorrow. I can't...

That sounds like quite hard work? I think my strategy is the opposite, in that most of the time I don't think about it. I'm too taken up with other things. It's more the little feedback signals: did sitting down for a rest half an hour ago help? If it did, my back brain might prompt me to get...

Yes, it is hard. I've been ill since 1976, though, and that long experience is part of it. It's also the case that I'm retired, live alone, and am not severely affected. The absence of ongoing, difficult-to-calculate energy consumption that's required in a shared home must make it more...