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A news thread for news from Mexico, and central American and Caribbean countries.

Perhaps the sequencing of the post-covid ME/CFS samples coule be funded by the Schmidt Initiative for Long COVID (a billionaire ex-Google CEO’s intiative that claims to have a global focus)

The way I understand GWAS (30,000 data points) does a sort of birds eye view check of the genome and highlights common variants and associations. While Whole Genome Sequencing (3 billion data points) tests the entire genome. So a lot of stuff could be missed by a GWAS that WGS might pick up. It...

This is a good shout. I was looking for a possible genetic analysis service myself in the past but they nearly all have either (1) Major privacy flaws (ie. they sell your data) (2) Don’t have my trust because they offer “personality”, “skincare”, “exercise” and “diet” recommendations based on...

Lausanne University (CHUV) Long COVID clinic. They refer anyone with brain fog or “unexplained” disability to the memory clinic which is a run by a neurologist who basically diagnoses anything and everything unexplained as FND. The long COVID clinic will still see you but only after you go to...

Best thing for me was retainers. Don’t have to worry about grinding anymore. For me personally grinding was mostly a problem linked with the adrenaline or whatever causes that “wired” feeling after overdoing things.

i hear you, just for clarification my comment was meant to be sarcastic

I don’t particularly like speculating on this, but my curiosity forced me to ask, could the shocking adverse effects found in Crawley’s study have made her rethink the whole GET narrative, and subsequently explain her cryptic withdrawal from ME research and “treatment”?

They hear severe distressing symptoms and imagine the “distressing” is the problem as opposed to the “severe symptoms”.

As @obeat previously suggested. Since she’s a billionaire and negatively caricatured pwME, I’m sure she won’t mind funding a 7£ pound study on ME. That’s like, what? 0.1% of her wealth?

I agree but the part I was commenting on was meant to be the sentence under where they said they will be basically analysing samples from severe people in priority.

Being caricatured as “abusive” given the widespread systemic abuse pwME are facing is particularly despicable.

Just discovered this thread. Quite shocked and disappointed to hear about JKR caricaturing pwME basically as an ableist stereotype of lazy malingerers. To think listening to her Harry Potter audiobooks on repeat is what got me through my first “phase” of severe ME (before I lost ability to...

Note that this study didn’t have a control group and therefore had no bliding. And most of the participants had only been sick 1-3 years (median 22 months) which is a timeframe which often coincides with natural improvements. Also, if later on we do learn that this treatment does in fact work...

Based on the outrage following the news of the protocol being rejected, I think it’s a good time to share the petition on aocial networks again. I shared it on bluesky following Todd’s accouncment and the post has been getting lots of reposts.

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...