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The BLOODY WELL LISTEN WILL YOU protocol. I like it.

I don't see how we can speculate about environmental factors without knowing anything about the history of ME. For all we know, it could have occurred with roughly the same frequency tens of thousands of years ago. Even when we get to written sources from the Bronze Age onwards, the chances of...

I'd still like to know how 'we neurologists' know this.

Done!

:rofl:

You'd also think two minutes in the sun would be more effective, since it emits a lot of red light.

I was called for mine three weeks ago, but only because I'm listed as high risk due to a medication that causes neutropenia. I think pwME would need their GPs to provide it/prescribe it, otherwise they're not very likely to get it. It seems crazy that the restrictions get tighter and tighter...

Next they'll be advising A&E staff to shout "Ooh look, a squirrel" when people come in with dislocated shoulders. I'm starting to regard this approach as a deliberate disinformation campaign, akin to people with extreme views who disrupt and distort mainstream politics. I think I've given them...

Same thing struck me about the EBV reactivation. If people have reactivation but there are no symptoms clear enough to alert them, it's very hard to know whether pwME have greater, lower, or roughly the same levels of viral activity.

I found the following via Wayback Machine, which may be the thing @Adam pwme is looking for: https://web.archive.org/web/20040805094145/http://www.meassociation.org.uk/fcampaign.htm

It may happen eventually. If any of the current promising-looking research works out, presumably the normal process begins: replication > drug trials > larger treatment trials > rollout. At this point it would probably be integrated into mainstream NHS services. If an existing specialism or...

Thanks, @chillier, it's so cheering to know the work's being done by a member of S4ME as well—I'd no idea!

It worked earlier but weirdly doesn't seem to now. The one further down the page does—I'm not sure whether me quoting it below will do something to it, but the link as it appears in @Simon M's first post works.

Thanks for that, @Simon M, it does sound as if they've a good chance of picking it up if it's there to be found.

If they can show something that looks convincing, they might have a good chance of getting more funding anyway. Part of the problem with accessing larger grants seems to be that there isn't a strong enough case to be made—our evidence base is really patchy. A small study with a standout result...

Yep, exactly that. :hug:

But that is the experience for some of us. Maybe quite a lot of us. It's not that we rashly carry on beyond our capacity, because we need someone in a clinic to put us through a course—we can feel as if we have the capacity when we don't.

I'm not sure we will find a single biomarker. It seems more likely it'll be indications of pathology, which aren't necessarily consistent across patients with similar symptoms. But it's a really interesting question all the same. Replication of any results might be needed in different cohorts...

If they hadn't scrapped the disability employment scheme in the first place, they wouldn't need to reinvent it. :rolleyes: I know several former miners and steelworkers who benefitted from the old scheme following injuries or redundancies. Slightly implausibly, given their broad accents and...

Another thing about conversation, @Hoopoe, is that everyone I've ever been close friends with talks a lot. I mean a lot. It was never deliberate and it took me a long time to even notice it, but in part the friendships work well because I'm not naturally garrulous. I'm happy to be the quieter...