I'm against using fatigue as a proxy for PEM severity. If you want to know about PEM severity, by all means include fatigue, but for me at least...
Can someone on Twitter ask them for more information, eg a website for the conference and who is behind the organisation.
Symptoms by definition are what is subjectively reported by the patient. Signs are things that can be seen and/or measured by others. Fatigue...
I'd like there to be more longitudinal studies that follow patients over a year or more, with continuous monitoring of everything that can be...
I also have significantly reduced veg peeling and chopping by using frozen veg and some supermarket ready peeled and chopped fresh veg. I try to...
Can you clarify what you mean by measuring PEM?
I have read through the paper. They did not find any useful effect from their carefully planned, well supported by experts and individualised...
Hi @yannlk, I'm really sorry to hear that. I think this shows up the importance of trials like the one on this thread being done properly with...
My solution to the kitchen sit stand dilemma is to sit on a high stool.
That's a pretty good article by Charlotte Blease about the Dragons' Den part of the story. I'm concerned that by repeating all the bad ways pwME...
I wonder whether many doctors are using that post viral code for Long Covid.
This thread might be useful: Mast Cell Activation Syndrome (MCAS) - discussion thread
I have some sympathy for Whitney, in that as a very sick person probably only able to read a little on social media, the last thing he would want...
How can they double blind beetroot juice versus water? And what is the hypothesis this would be testing?
I agree, it should be useful in all sorts of clinical contexts, not just physiotherapy. Many thanks to Physios for ME. And I agree with JemPD...
42 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, CTRS. DISEASE CONTROL & PREVENTION, https://www.cdc.gov/me-cfs/treatment/index.html (last...
Some posts have been moved to: NHS England web pages on ME/CFS updated 29th October 2021 (NICE publication date)
I think the most annoying thing about this article is the authors' rewriting of each of 4 womens' words in order to 'explain' them and fit them...
And another one: Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence, 2022, Krabbe et al
Another article from 2 years ago by the same team about the same group of 13 young women's experiences. The fragile process of Homecoming - Young...
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