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I think it’s relevant to keep archiving and keep discussion/sharing news articles on ME which are very poorly written. The large majority of these don’t fit in another thread and aren’t worth making a new thread of their own.

Yeah. I made sure to complain about the fact the survey felt like it was desgined for people who were just mildly disabled from Long Covid ie. having questions assuming I could still do some types of exertion. I also made sure to complain about the fact PEM was not included. But I think it’s...

This really makes me think of Jarred Younger. Who said that by the end of the year with some studies he’s doing in Microgliya with very sensitive CT scan and MRI we would likely have definite proof of neuroinflammation. I guess we’ll see over the next year if that holds…

The Johns Hopkins Bloomberg School of Public Health is conducting research about how the COVID-19 pandemic has impacted people’s lives, especially around COVID-19 symptoms and recovery. they have a twitter account too...

Just completed this John Hopkins long covid study survey. I think it’s worth filling out if you can manage: https://covid-long.com/ should take 10-30 min.

neurobollocks would be a fabulous term for fnd

I’ll have to see how they age but I’m getting really good vibes from the chronic collaboration.

@Mij link does not seem to work

Anyone can share an archive link of this axios article publsihed today? Long COVID may have slipped from the headlines, but a group of senators wants it to loom large in the coming appropriations process...

They agreed to sign! Who can I private message to send the proof? And also share some questions they asked me, looks like we might get a signature from Long Covid Europe and Long Covid Kids Switzerland too. :)

As a very severe bedridden and mute person, this and the lack of acknowledgment of severity is suprising. Also the treatment of diet as such a major management strategy really feels like another flavour of the “make deep breathing”. Both of these things are good but they are also good for...

Article from what seems to be an Italian news source: https://www.agenzianova.com/en/news/long-covid-doubles-the-risk-of-hospitalization-with-over-4-deaths-from-this-condition/ The impact of the Long Covid on the state of health is proving to be relevant from the point of view of the National...

I’ve seen similar language used in online ME forums that have a lot of people new to the illness and very mild. I think it’s a really hard pill to swallow that it’s so rare to recover, and unfortunately even that kind of language that seems absurd to us might strike a cord with some unfortunately.

It’s crazy to me that their reporting is more “balanced” on the scam of a treatment the lightning process is, than it was when there were accusations of harassment from a few members of a vulnerable patient group.

If I have the energy in the next few days I’ll send it to Chantal Britt, the head of the swiss long covid association (assuming they haven’t already signed it yet)!

Thanks for doing that @forestglip. Also slightly random, but does anyone know if there is a way to see the most viewed me-pedia pages per certain time period (such as past month or year)? (Without having to mess with the API). I’m only able to find an “all-time” most popular pages page.

Fair enough! I wish I could have the energy to use a laptop and train some ML models. That was a large part of the degree I was studying for before I got hit with this marvelous illness. Anyways, cool idea! I really hope the advancement of ML and DL and other types of AI will help a lot in...

Nominate this charity to get extra funding, takes 60 seconds :)

Given these numbers, I wonder how accurate that 3.3 million figure that CDC published is. Although they asked patients if they “still have ME/CFS” in the CDC questionnaire, am unsure if this one counted only those who had been diagnosed and not those who said they still had.

Wish I had some distant connections or idea how to contact melinda haha…