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Luckily a workable clinical review tool exists already. Typical question I'm asked: "Is there anything you've been struggling with more than usual, or have you been a bit better?" I can't for the life of me see what's wrong with transferring this approach—asking a simple question that both...

Given the discussion on the thread about the MEA-funded clinical assessment tool, the session on clinical trial design might be an opportunity to submit some questions:

I hope the list of activities includes filling in pointless questionnaires.

That probably is different to introversion, as severe anxiety can be physically exhausting. My only proper taste of it was when required to speak in front of others or similar. Every muscle seemed to be held in tension, and I'd leave feeling as if I'd done a 10-mile hike. I get some of it...

As an autistic introvert from a family of introverts, I can happily confirm that it doesn't resemble PEM in any way. Not even a homeopathic-strength hint of it. For start, it's not obligatory (we'd rather have time to recharge, but can manage without) and going to work every day in a highly...

Yes, which first goes out on Tuesdays. The other possibility is You & Yours, which although it's often described as consumer oriented, does cover some health topics. It depends how deep they're going—File on 4 is much more in-depth than the magazine-format You & Yours. If it's a substantial...

I'm not sure. It seems to be accepted that natural recovery is possible in ME, and we really need to know what proportion does recover and how long it takes. It wouldn't be possible to separate new onset ME from other post-infectious conditions anyway, because they'd look just the same. The...

Not necessarily. People with a reasonably well established viral trigger (e.g. a positive EBV test in the months beforehand) may still have a gradual onset. My own case was more circumstantial, because although I was exposed to EBV via my boyfriend several months before my ME symptoms started...

According to the error message I received, even if you have a Microsoft 365 account (I do), it needs the email address linked to the account to exist within the University of Manchester's domain. Unsurprisingly, since I've never had a link with any university, mine doesn't.

Especially as, if we accept that ME/CFS has a clear association with Epstein-Barr virus a clear association with COVID-19 virus we have enough causation theories. What we need is an understanding of the puzzling chain of events that can result.

Hear hear. Me: Onset 1976. Diagnosis 1999. Aunt: Onset 1935. Diagnosis 2006.

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.