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Credit to Sonya and her team, they are working on getting the message out.

A post about a large German epidemiological study has been moved to Long Covid epidemiology (prevalence, incidence, recovery rates)

From the study that @lycaena linked to: A huge study, but with a 3 month minimum, it's a bit early to know about medium term impacts. Hopefully they will follow up.

Due to the direction of the posting, we've changed the title of this thread to cover brain fog/cognitive dysfunction generally, rather than just the article in the first post.

It's so frustrating to hear doctors talking like this about ME/CFS, building up the wall of misinformation that we have to painstakingly take down. At least we have statements from Nath that Long Covid was predictable, based on the effects of other respiratory viruses. And the evidence review...

From a study by UK ME/CFS charities (follow the arrow to the post) Also problems with selection in the UK survey too, I guess. But I don't think ANZMES has helped the people it aims to serve make a rational weighing of the evidence of potential harm.

I think it might be because there is no good quality evidence for problems with corticosteroids levels being a feature of ME/CFS.

I have been rather concerned about the way ANZMES approached this whole thing. First they sent out a letter in which people, who many in the NZ ME/CFS community greatly respect and believe are experts in ME/CFS, raised the spectre of people with ME/CFS suffering greater than usual side effects...

A post about a large US epidemiological study on PASC has been moved here: Long Covid epidemiology (prevalence, incidence, recovery rates)

I think this is an interesting study; I think they found real differences! Yes, I have allowed myself an exclamation mark. The leg pain and increase in leg circumference upon standing fit with what happens to me; I do have postural orthostatic tachycardia, especially on bad days. @Snow...

We've talked about misery perfusion before (in the brain). Looks as though any part of the body can have it.

This long Stat article is by Eric Boodman. I think he's done a really good job at setting out the issues. Which are many. The story could probably be the plot of a movie. And the story is still going. This was the genius of Gillis, the man behind the test, to link it to a proposed treatment...

Cort has written about this study: https://www.healthrising.org/blog/2021/11/13/mast-cell-activation-ibs-fibromyaglia-chronic-fatigue-syndrome/ suggesting I'm interested to see if that is really the case.

I don't think I've experienced it as pronounced as that, just the feeling of being very cold, shivers that move across my body that probably can't even be seen, and an urgent need to lie down. Reading about possible causes, maybe it's caused by a rapid drop in blood pressure? I get something...

That's a very nice resource @Amw66. I liked the emphasis on believing that the young person is actually ill. And this: I'd probably go further than the resource does in noting that formal education can even be completely abandoned for a time or perhaps for good. The resource seems to be...

:rofl:

Yeah, it does seem to be testing for consistency. It would be easy to cheat, by recording the answers, but that would defeat the presumed purpose of the survey. I do wonder how useful the survey is though. I suppose if it shows that self-reporting isn't very reliable with even a small delay...

That link takes you through to a Guardian article about the NICE ME/CFS Guideline (at the time, the draft version). :)

Are the patient charities (including the Long Covid charities) able to do anything to warn people to avoid this study? It sounds like a disaster in waiting.

I don't think 'patients driving demand' is a reasonable defence. Patients can want all sorts of things if they think they might be cured. Responsible doctors don't necessarily agree. We've had patients that desperate that they pay vast sums to get their necks fused. And when that doesn't...