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First posts copied and others moved from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 ******** Most people with a 'proper' chronic illness have an annual review, don't they? I have them for two different conditions, neither of...

I'm a bit torn on this one. PwME should have access to consultants, but those doctors need training and experience first. Is it better to put ME/CFS inside a specialism now (and risk it being the wrong one when we unpick the pathology) so that they can gain experience of looking after patients...

It'd be hilarious if still being ticklish was our get-out for being diagnosed with FND. :D

The government thingie, that got put on hold when the election was called. I'm so brain fogged I can't even think of a term to search for it! :rofl:

Good idea—maybe we could ask for it to go into the action plan, or whatever it was called? It's not difficult to do, especially if a simple pre-illness history is captured at diagnosis. Reviews like that could be done by phone for people who're able to use voice calls, or online. We might be...

More often, the pretence seems to be that we have a disease model of ME in humans that we can somehow replicate in non-humans. We don't. There's nothing we can test in humans, animals, or computer simulations, because we have no idea what we're looking for. That's the problem that really...

I don't know, but the point is that it should. PEM is what matters in ME, so that is what should be measured, assessed, or whatever. New patients need to understand PEM, and gain a picture of what factors (including the self-imposed ones we all tend to start with) are pressures on their energy...

ETA: Sorry, I started writing this some time ago in response to earlier posts, but it looks well out of sequence now! I agree very much with the approach, but for the moment all we have are these short-term management courses. There don't seem to be any plans to monitor people beyond that...

Galway

At least there's some observable pathology. In ME, we've no idea what the pathology looks like; until we do, we can't even know whether or not we've succeeded in creating a model.

I wonder if this might usefully be expanded to include peaks of onset? The 'most common in people between the ages of 40-60 years' is true from the point of view of epidemiology, but it always looks a bit odd to anyone familiar with ME/CFS. They're more used to thinking and talking about age at...

There are, but it's not an unusual situation. A patient or participant can be taken through a lengthy diagnostic process, an answer can be found, and they can then be asked if they want to know what it is. Obviously I don't know how this study will handle it, but I've been in that situation...

My ten bob's on "because we always do". I went through my working life wondering why people did what they did, the way that they did. It took me 20 years to learn not say "it would be quicker/easier/make more sense to...", because they wouldn't want to know that. I never did quite master "but...

And therefore quite expensive to employ. Universities are trying to cut costs, I know three people who've been offered early retirement packages. I think they're between ages 59 - 63.

And we're putting up with it, instead of marching through the streets.

The analysis sounds like a specific panel: People can opt out of the remaining genetic material being stored for future research, but I suspect they'd need to read the consent form very carefully to make sure they do: This is unclear, and I'd probably ask more about it if I were taking...

I'd be surprised, specially as it's such a small cohort and there's going to be data from a much bigger one (albeit only adults) available to researchers soon. There's a more obvious motive: a drug company has an expensive product for which they need to recover their investment, but only a...

Yep! But according to the optometrist, some people just do. I noticed it 20-odd years ago, but I'm not sure whether it changed or I just hadn't spotted it before.

Me too! That's part of it, but it also feels exclusionary because most people won't know what it means—it even stumps me sometimes because it's so unusual to hear it. Saying P-E-M at least makes it clear it's an abbreviation, not a word.

Disinformation is only 'politically vital' to those with certain political affiliations. You could make an interesting film about that.