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Sorry of this is trite but it feels like the most useful training for now would simply be: - Most of what you may have been taught or heard about ME is wrong - Patients severity and symptoms will vary, trust them and what they tell you It’s disheartening to hear how this process has been going...

I didn’t really notice a difference in my hand grip strength but when it was measured it was way down and dropped on subsequent tests. Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al They appear to have just taken an average in this rather than look for any trends...

Maybe a temporary problem? The link is on their Facebook page and there are comments about issues accessing it but I just checked and it seems fine.

Threadreader version for those not on twitter https://threadreaderapp.com/thread/1841060345017721278.html

There seems to be a v2 of the paper posted a couple of days ago https://www.medrxiv.org/content/10.1101/2024.08.26.24312606v2

Thanks @SNT Gatchaman I’m fascinated by the changes our bodies undergo in space and the Twins studies have been really interesting. It would be ironic if some of the changes seen which previously put down to deconditioning were something else wouldn’t it? While we’re looking for life out there...

It’s amazing isn’t it! Did you hear the stories about the microbes on the space station and how they are evolving? I realised a while back that I mistakenly thought of medical doctors as scientists as they have usually done science things. For the most part they are not, they are more like a...

Interesting, I can’t read the whole article but I wonder if they are already or how long it will be until we do get into the good v bad bacteria side of things? Microbiomes appear to be very in vogue.

Link to watch and download the video. https://bit.ly/4didHTK I’ve not listened yet but from a skip through it has detailed presentations from various people on the different studies that have been taking place and their findings, looks very interesting.

That’s a good explanation of something that I recently realised seems prevalent and involved in many of the problems we see. Saying ‘I don’t know’ can be hard for all of us. Even more so for people who want to help and/or feel very highly of their own ability and/or feel a pressure to...

Good to see (As many will, I have family with Parkinson’s). As an aside It’s interesting to see direct quotes there from Parkinson’s UK’s information for journalists page, which I was looking at recently and wondering if ME charities could do a better job of communicating and advocating with...

It all sounds very press release-y if you see what I mean? Hopefully there’s something meaningful underneath it all. This page was shared in another thread I think, which has a link to a flyer with a bit more info: https://precisionlife.com/beginning-to-unravel-the-biological-drivers-of-me...

I’m not sure how current this is (it’s from 2021) but I also found this https://www.malmesburypcc.nhs.uk/wp-content/uploads/sites/120/2021/07/curable-poster-chronic-pain_a-cycle-of-stress-and-pain-1.pdf And a GP practice...

Wholeheartedly agree. Research could become an easy decision if DecodeME shows us where to look. So maybe some preparation for that, get mechanisms in place to move. But for now it’s institutional change in the NHS. Which is very hard to do but could have significant benefit and will be needed...

I tend to be more in the having trouble eating or eating enough category when I’m bad. When appetite and ability to eat returns it’s generally a good sign for me. I definitely notice an impact on mood too though. Hope you uncrash soon and the potato chips were good :)

In my experience CBT is very good for some things. But is also sometimes used as a term for therapy which isn’t actually CBT. And also used completely inappropriately for things it shouldn’t be… In that way it reminds me a bit of the terms and practices of Scrum or Agile in the tech world. I...

This was exactly my experience. A good bunch who were keen to try to find out what was wrong, especially given my history and how my ME started. But it was short term and when all their tests for exciting tropical diseases turned up negative I was discharged and became as many do, stuck in a...

I’d agree that’s a really good approach. It nicely opens the door to showing how good quality research and education is a solution too.

I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences. This is what I’ve been...

Copied post I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences. This is what...