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When I read something like this, I just want to know what a control would look like. I hope there’s a waitlist for this centre, and I hope Saugstad and colleagues will assess those on the waitlist at baseline and after a year to get some idea of how a control group would do. While there's no...

The issue for us is patient selection. These were people who were hospitalised with COVID. Exercise might be helpful for many who come under the "post-COVID syndrome" umbrella, e.g. those with respiratory issues. Post-ICU, people can feel pretty terrible, and that often includes fatigue, and...

And they might be right in many cases. I think a certain amount of scepticism is a good idea. But too often people start seeing mainstream medicine as the enemy, thwarting their access to effective treatment. And so they miss where mainstream medicine is right.

I'm not sure what this means - meaningless for what? Diagnosing a current active infection? Diagnosing a chronically ill state following Lyme? Distinguishing between current and previous infection? Determining whether treatment has been effective or not? Oh I think it's always possible for...

I agree. I think these types of discussions are very useful, as people with ME/CFS or not-yet-diagnosed-with-anything need to know that a positive test for Lyme from certain labs is meaningless. It can save people (who don't have Lyme) from spending a lot of money unnecessarily, from adding a...

Maybe this post by @Dolphin ? Sounds like it was a bunch of journalists, along with others...

Yeah, we hear of people being diagnosed by a German lab where I am too. Armin offers two tests that mention T cells - iSpot, which was in the Boorsma study cited above, and EliSpot that was not one of the tests included in the Boorsma study cited above. They link each test to a long list of...

Me too. I very much hope that, if Milly's Lyme diagnosis is correct, she responds to treatment, and if she has ME/CFS - or if chronic Lyme is, in fact, better understood as ME/CFS due to a Lyme infection - she will be one of the majority of younger pwME who get better in a mean 5 years, as in...

Brilliant! I see what you mean - good to hear the downsides too. Yeah, I should be able to turn because my chair turns on the spot and the path should be wide enough. Unfortunately not. There's no level or ramped access (until now, we're mid-job). I'd have to do a ski jump to reach grass...

Thank you for saying that @Binkie4! Your reasons make sense to me. When more tired, I do things like walk into doorframes. So I will likely do the same in the chair. And you're so right - I will relax more if I know we're not just relying on my unreliable brain to get me to the other end...

I have a question for @Kitty, @Binkie4 @Dolphin and any other wheeled-up people. We're having work done so that I can access the garden. Basically there will be two patios joined by a path. The path is 160cm wide, plus 6-10cm edging stone on either side. The surface of the patios and path...

That's a great article - thanks for posting it, @ahimsa .

Some responses below. I'm sure many will follow tomorrow. https://www.nature.com/articles/d41586-025-02876-1 https://www.gov.uk/health-and-social-care/medicines-medical-devices-blood-medical-devices-regulation-safety

https://www.bbc.com/news/articles/cx20d4lr67lo

I want to echo @EndME , @Sasha and others and say that these debates are really valuable, and thank you for sticking around. To pick up on some of your replies to others: I think this is a slippery slope. What one person considers to have a high risk of harm is not what another considers to...

Or diabetic coma. One of the two. I gave it time. I got closer to the coma than the magic of allostasis!

Is sitting cross-legged an option? Or legs folded under you? You wouldn't need to do it for the whole study period. I know some desks don't leave enough room for legs. In school, long before I knew what OI was, but I now realise I had a bit of it, I used to twist my legs around each other...

Ugh, sorry this has happened. I hear you. What I've found for me is that ideally I only do cognitive things in the morning. If I let it leak into the afternoon, or even worse, evening, I really pay for it. I'm being bold at the moment, and I am paying for it. I find that doing anything...

Tryptophan maybe? You can get that from a ton of foods, including lots of non-meat sources. There's a big list here. I would not be able to fall asleep if I ate a high-protein food close to sleep time.

I get the sense that in the long covid world, there is a perception of many things being "treatments" when they're unlikely to be more effective than placebo.