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Feel free to move if this is wrong thread. From Todd Davenport on Bluesky: The author team received word today that Cochrane will not accept the protocol we submitted to update the 2017 review on exercise therapy for ME/CFS. To say the very least—a disappointing development for people living...

This post has been copied and some following posts moved from Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian From Todd Davenport on Bluesky: The author team received word today that Cochrane will not accept the...

This has got to be massively expensive no? Isn’t Whole Genome Sequencing far more tedious and expensive than GWAS?

Wow, that’s the first time I’ve ever heard that. It’s really refreshing compared to the studies that just ignore anyone who is too severe to make it to the testing center or whatever.

Yep. Though to be fair, a treatment that can improve my functional capacity by something tiny like 5% on a bell scale would be lifechanging. I might be able to tolerate sound again, have short conversation, tolerate humans in my presence, properly wash, listen to music… Like a very small...

The paper found high ALT/ALAT levels to be associated with ME. I looked through my blood tests and that doesn’t match my n=1 results. And I have a lot of blood tests done lol. For reference according to most websites a normal level is from around 7-50 U/l. These are my blood test results for...

What’s worrying me is that the long COVID clinics in my area has started auto referring anyone with disabling symptoms to an FND clinic.

Multiple arguments have been made as of why, one of the ones that comes to mind is it’s an easy name to ridicule and misappropriate. “oh I have exertion intolerance disease too! I hate exercise.” But personally I think it’s far better than both ME and CFS, it encapsulates my experience in a way...

In my email correspondence, I did indeed slip in a link to the researcher applications for decode ME data.

Compared to costs of running a study, it’s not that much to pay each participant 100 USD equivalent which is probably going to be a motivator.

I emailed the corresponding author and received a prompt and interesting response. Interestingly, POTS and ME were not considered as alternative diagnoses. So people with both Long COVID and POTS and Long COVID and ME were included in the study. (This raises the question of us needing a steady...

Anyone have access to the full text? It’s unclear to me if these are found in people with acute COVID or long COVID?

I hope we get a small brain autopsy study into people with Post-COVID ME/CFS with atleast 4 years since last COVID infection. It would tell us if all this hype is really worth it, or if we can put the persistence theory to rest once and for all. My personal hunch is that the development of...

What irks me about this selection is it is completely unclear what happens to people that develop post COVID cases of ME/CFS, POTS, or other common labels often included in long COVID subtypes. Does that count as an “alternative diagnosis” which means they aren’t in the study cohort. If so it...

Some sentences that mention Ampligen They seem to mention wanting to prioritise researching the potential of Ampligen in Oncology. I haven’t really followed Ampligen much. If it finally makes it to Argentina, will there likely be a phase 4 trial?

The current situation is that formal mentions tend to be ME/CFS and informal mention tend to be CFS. (except in very informed or activist groups where that moves to ME). Hopefully, the best case scenario for me is formally ME/CFS and informally ME, so there’s none of that “chronic fatigue”...

This is really cool as a way to include more severe people. It seems at this point long COVID research may be giving us clues into that stage (1st year or two) when you are developing ME/CFS and a lot of people spontaneously recover.

Unfortunately, it’s not entirely suprising. The charity’s slogan is “recognition, research, rehabilitation”.

It’s pretty bad. Among many things they: * define “PESE” as “exhaustion” * In 7 pages, a single mention of “CFS” which is a link to an Australian youtube channel about how the youtuber recovered from ME/CFS * No mention of severe disability, and a recommendation to have a gradual return to work...

Long COVID SOS, just published a 7 page GP leaflet with the collaboration of Royal College of GP’s and the Clinical Post COVID Society. https://www.longcovidsos.org/_files/ugd/8bd4fe_2c32c19ec66c4396bbaedae8a42fe167.pdf