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Thank you!

Or at least to draft the article about it. Which I would, to be fair.

It's always possible he was just bored witless and couldn't be bothered. Which is a perfectly valid response to a psychology exercise like this, as is attempting to game the game.

Oh, thank you! This ruddy thing's a nightmare to get through. :blackeye: So most of the exclusions seem not to be due directly to being diagnosed with one condition when they actually have another. I'm not sure about the "other diseases" entry at the bottom of 2A, but it may mean they had...

I wondered if there was anything on the diagnostics side. As they wanted participants who'd become ill in a limited time frame the majority of patients were automatically excluded, but why were some people who met that criterion also screened out? If it was because they had (or might have)...

It might depend on where you are, and whether the funding is private or public? Private foundations have a lot of discretion, but it's hard to imagine further study based on weak or over-interpreted data would survive scrutiny by a publicly funded research council.

Well, ill-informed at least. I talk about planning because it's a useful word. But I usually add that planning changes constantly, because it's contingent on so many things and I have no way of knowing most of them at the time. Will I have unexpected PEM? Will I have enough cognitive function...

I wonder how many pwME would have been able to work that out, given that they were in a very unfamiliar situation and almost certainly well into PEM? I couldn't work out probabilities if I were given a calculator, a maths tutor, and a month to do the sums, but even for people without that...

I guess logically, it wouldn't. If a treatment shouldn't be used because it doesn't work and isn't cost effective, there's no point expending effort reviewing the potential harms of it. That's not especially helpful to patients if recommendations aren't being followed, but it makes sense.

Ugh! The trouble with these function tools is that they never begin by asking what day you're on. Broadly speaking, I have four types of days: Preemptive rest time Capacity for some activity Post-activity rest to reduce PEM PEM, illness, or incapacitated by lack of sleep Answers to...

I have more of a problem with the name than the underlying concept. Even assuming they've understood and applied the test appropriately (and I make no such assumption), the name's inappropriate because it doesn't communicate the prophylactic nature of conscious and subconscious effort...

The same the way they set up the test of people's ability to speak Polish for 20 minutes. They didn't even entertain the idea, because it would be inappropriate, pointless, and they wouldn't understand it anyway.

Very true. But out there in the normal world, you often meet with the same team (consultant or registrar) for extended periods, meaning you get used to the routine and can ask to do things a particular way. At one of my clinics I realised I was getting thrown by an unexpected question every...

If some of the questions are not asked, or not regarded as important, in other diseases of energy limitation, would that be part of the reason for considering them technically illegitimate?

Don't think he'll be mistaken for someone who knows anything about anything, TBH.

Good points. I suspect many of us do our best to escape the culture by not participating in these clinics once we've been diagnosed, learned the basics of management, and realised there is no treatment. At their very best they consume valuable energy for little benefit, and the worst are...

This is key. But I'd still like to know who the forms are for. Most pwME are managed by GPs, as almost no one in Britain seems to have an ME consultant (please correct me if that's wrong). To begin with, a good proportion of those managed by GPs actively avoid discussing ME unless their hand...

And is anyone going to do it? I've never had an assessment, and nobody monitors me the way the rheumatology and asthma clinics do.

Patients will only be able to give useful answers if the questions are related to their real lives. They can't compare themselves with someone else, or accurately rate symptoms on meaningless scales—they can only say how the illness impacts their ability to do the things they need and want to...

Apart from the use of CFS, I think it's rather good. I'd change "extreme physical and mental tiredness" to "mental and physical exhaustion" and "treatment" to "management", but I could live with the rest. (The Daily Mail ties me up in knots. I'm often infuriated by the political stances they...