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Some posts have been moved to a new members only thread: Fact sheet #4 - Management of severe and very severe ME/CFS - discussion

Lots of countries besides the UK have a Wessely-like person with power and influence over ME/CFS research, welfare support and medical care, to our detriment. I think it's an interesting thought experiment to imagine these same individuals, given the same amount of power and influence, if they...

Well said, Hutan. It is disheartening when patient organisations, with the best of intentions and a lot of hard work, produce materials unlikely to be helpful and including poor evidence and advice.

An Overview of Heart Rate Variability Metrics and Norms Fred Shaffer 1,*, J P Ginsberg 2 PMCID: PMC5624990 PMID: 29034226

I also think this product is more likely to be useful as a research tool than as a guide to individuals on their activity management, except possible people new to ME/CFS who haven't yet made the connection between their activity and symptoms. I can see such longitudinal records as having...

Welcome, @nanay. Thank you for joining us. I think the research looks interesting. I have signed up to try the free beta version of the app when it's available using Android and Fitbit. I wonder how familiar you are with ME/CFS, specifically that the key feature of ME/CFS is PEM, not fatigue...

Could this have something to do with Wessely being on the NHS England board of directors?

I would not trust an Internet survey like this as a basis for decisions about my health. We have no way of knowing whether the respondents are real people, have really tried the treatment, have ME/CFS, have a financial interest, or anything about dosages or long term follow up, whatever other...

Many of us can't see Twitter threads. Can someone say whether this is just chat or has some valid scientific content?

Nice to hear it still works for you, @leokitten. We seem to know nothing that would make it make sense. Does anyone have any news on whether there's any research on this drug for ME/CFS, either biological or a clinical trial?

Doesn't that just reflect the fact that someone who is 20 at the time of the survey may have got ill in their teens, but the 20 year olds at that time who will go on to develop ME/CFS in later years can't be counted. Similarly those who got sick 40 years ago will only show up if they are still...

I think MS is well known to be more common in white northern Europeans than in people whose ancestry is closer to the Equator. Maybe ME/CFS is similar in that respect. Can you run a correlation between searches for ME/CFS and searches for MS?

As the authors of this paper point out a more useful wearable than the current ones sold for 'fitness' tracking, would be one that buzzes or beeps to tell us to slow down, not one that buzzes or beeps to tell is to get moving. My fitbit vibrates when I'm overdoing it sometimes, but it's message...

I think some tools can be helpful in the early stages of illness to find out what sort of step count and time spent continuously on mental activity leads to crashes and how long you need to rest. It's about helping someone to tune in to the signals they are getting from their body so they learn...

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I agree it's a pretty good article. It's good to show a range of severities, particularly very severe. Quote from the article: Does anyone know what 'individualised support' they are providing?

Posts copied and moved from a thread about a BBC article Service website here I agree it's a pretty good article. It's good to show a range of severities, particularly very severe. Quote from the article: Does anyone know what 'individualised support' they are providing?

Given that many cases of ME/CFS are triggered by infection, could the onset peaks be partly a reflection of two phases in many people's lives when they are most exposed to infections - when they are at school, and when their children are at school?

A question about severity and its association with age of onset. Many pwME experience a wide range of severities over the course of their illness. How was that dealt with in the data? Is it severity at the date of recording the information, or at onset?

I haven't read the article, but the abstract reads to me like it was written by people who have been asleep for the last 6 years and just woken up and said: 'holy crap, is that old covid thing still going on, who'd a thunk it. Maybe we should start thinking of some things to do about it. I know...