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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

Seems to suggest severity of neurological Long COVID symptoms is not associated with severity of acute infection. See study thread

Relevant to the fact mild infection is seen as much in long COVID as severe

Background A variety of symptoms, particularly cognitive, psychiatric and neurological symptoms, may persist for a long time among individuals recovering from COVID-19. However, the underlying mechanism of these brain abnormalities remains unclear. This study aimed to investigate the long-term...

Also @Dakota15 would it be possible to put tweets in quote boxes when you share them. Them loading slowly when they are not in quote boxes sometimes makes my browser crash. (I’m on a very old device).

It’s actually pretty sad how little is being spent on basic biomedical research, and as a result, how little we know about the actual disease process.