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Do you think it would prompt a crisis for the MEA if they do? If all they do is put forward a legitimate motion in a manner conforming with procedure, it certainly ought to.

Those categories might be less enlightening than we think anyway, though of course they're worth capturing in study data in case they're important. For instance people like me, who can't tick the 'infectious onset' box, are unlikely to be certain their illness wasn't triggered that way because...

It's not un-useful to arguments about the gender pay gap either!

Did they get an opportunity to comment on them beforehand? I don't know much about this study, tbh. It's not very common for patients to be consulted on the outcome measures before a trial design is finalised, but if they did in this case, it is a shame they didn't raise concerns earlier. Some...

That's a really interesting approach. I'm surprised there have been so few studies that looked at actual work or higher education outcomes in relation to rehab. Maybe policymakers aren't really that keen to know the answer.

If the study manages to say "This approach isn't working" to government, it'll have been well worth doing even if the results were entirely predictable.

This is great. Direct link to the tool, in case people can't access the Independent website: https://pip.turn2us.org.uk/

That's my concern too. It sounds like one of those alternatives to prison sentences that courts hand out. :confused: The thing chronically ill people miss most is the ordinariness of normal life. The stuff that's dull when you're healthy, because you can't imagine not being able to grab a...

It's been discussed for more than 20 years, though I can't always vouch for the bit about knowledge. :D The most plausible conclusion I've seen is that ME/CFS is what's behind OI, not a separate condition like hypovolemia. That it's a common symptom of the syndrome, and it tends to improve...

Some of Omega's previous talks (including Karl Morten's event from last year) are up on YouTube, but this one isn't. Hopefully they'll put it up at some point.

Excellent, will look forward to that.

Even assuming that's true—and he makes it clear enough that it's his opinion, not evidence—they're still disorders. Right, so mental disorders aren't a problem that should be medicalised. Got where you're coming from, mate. Why do people pay actual money for papers that print garbage like this?

And me. The poll asks about 'still shielding', and I never shielded in the way that some extremely vulnerable people did: not leaving the house, needing people to test for infection before visiting, and wearing a mask even when visitors test negative. Before the vaccines came along, I reduced...

:( Wish I could say it was a surprise, but it isn't. The full side effects profile of a new med can take years to emerge, and if its action is significant enough to alter people's metabolism, the drug should probably be prescribed by a specialist initially. Other new drugs with potentially...

Very much agree, but I also wonder about the issue of timing. Ideally the PPI group should be involved before a grant application is even drafted. If it isn't, it could be more difficult to change some of the elements that are most important from the patients' point of view—outcome measures...

This gets to the heart of it. It would be easy to design a manipulative questionnaire that gives no opportunity to comment on the real questions and concerns, and to fulfil a PPI quota by finding enough unwary patients willing to fill it in.

The language issue really needs tackling by charities and advocates. Descriptive phrases like 'complex multi-system disease' are important because we need to talk how ME/CFS affects people—sometimes in shorthand—but they do need challenging for accuracy and effectiveness. This phrase is about...

I've genuinely lost count, but I'm pretty sure I haven't reached double figures yet! :laugh:

Almost none, as most of us have only a fraction of the social contact that most people do. We're probably more at risk of getting it than spreading it. As not many of us are able to work, we're at least able to isolate if we do get unlucky. We don't have the problem some in the workforce face...

It depends what it means, really. OTs do it as part of their work, but it's mostly about maximising movement efficiency by making changes to home and work environments. That sort of fatigue management is genuinely helpful. Most of it's basic common sense, but it's still really good to have a...