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An interesting perspective, @boolybooly. I think I could write a similar description of what I experience in terms of symptoms, signs, function and PEM, but I have no way of adding the bits about what is happening biologically inside me as I go through changes triggered by activity levels with...

That is from March 2023. Thread here.

Let's wait and see what comes of this inquest, especially any recommendations made for changes in NHS severe ME/CFS provision. And the report of the government's implementation plans that Javid set up. The righting of present wrongs is the most urgent thing to pressure governments about...

Yes, it's idiotic.

Some posts have been moved to a new thread: Exhaustion in ME/CFS, what is it and what causes it - discussion thread

Thank you for sharing your late wife Vanessa's and your experience. It is important testimony.

This is the description of the GET from this study from the Cochrane review: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full Wallman 2004

From the discussion: This improved ability to do more work may be because the exercise regimen was not associated with any relapse. This may have resulted in the abandonment of the commonly held belief by CFS sufferers that exercise results in the exacerbation of symptoms, which consequently...

I have started a thread about the Wallman study: Randomised controlled trial of graded exercise in chronic fatigue syndrome, 2004, Wallman et al

However, the thing that stands out for me most in this trial is the description of GET, which is actually HR and symptom contingent pacing, as far as I can see. Here's the description of their version of GET: Graded exercise program Note that there is no mention of increasing exercise, or...

Here are the fatigue scores: Mental fatigue GET group: Before 6.3 (5.6–7.0) After 4.5 (3.9–5.2) Relaxation group: Before 5.6 (5.0–6.1) After 4.8 (4.2–5.5) p = 0.023 Physical fatigue GET group: Before: 11.6 (10.1–13.0) After: 8.1 (6.9–9.4) Relaxation group: Before: 11.4 (10.4–12.3) After: 9.6...

I have posted this old study because it's referred to in another thread Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Franklin, 2021 The problem raised by that thesis was quoted by @ME/CFS Skeptic: Rather than diverting that...

Randomised controlled trial of graded exercise in chronic fatigue syndrome Karen E Wallman, Alan R Morton, Carmel Goodman, Robert Grove and Andrew M Guilfoyle Med J Aust 2004; 180 (9): 444-448. || doi: 10.5694/j.1326-5377.2004.tb06019.x Published online: 3 May 2004 Abstract Objective: To...

https://www.mja.com.au/system/files/issues/180_09_030504/wal10613_fm.pdf I'm not sure anything can be concluded about GET from the Wallman study for two reasons. Diagnostic criteria Fukuda, and self selecting sample via notices in medical surgeries and newspaper ads. I suspect anyone with PEM...

From the substack article: Always that great confidence that 'rehabilitation can help some patients'. Maybe it does, if it gets them to slow down and apply pacing instead of trying to push through, but equally, maybe it's rest, time, and the ability to get time off work and suitable help and...

Do you need more input from people with ME/CFS who are or have been provided with NG and other nutritional support about how it was made feasible for them, and what did and didn't help them. I'm thinking of Whitney Dafoe as the most well known person on long term nutritional support, but I'm...

You're doing a fantastic job, Nightsong. I'm sorry we don't seem to have anyone else well enough to provide such detailed summaries. I thought about signing up to listen, but know I'm not up to writing notes while listening. Please only provide feedback at your own pace and if you feel it's not...

Can someone help me out of my confusion about FND? We have seen and apparently supported David Tuller spending a lot of effort getting people publishing papers that quote higher prevalence for FND and giving alternative lower figures, so does that mean we accept that some people have a...

Thanks @Hutan, I stand corrected. I knew I shouldn't try to discuss FND. I have previously steered clear of the FND sections of the forum most of the time as I have no experience or expert knowledge of things like movement disorders or non epileptic seizures and don't feel qualified to comment...

I think in a case like this it would be a reasonable request to ask the research team to show exactly what they did with the data and all the calculations and stats tests they did to reach the quoted numerical outcomes. It's not enough to say here's the raw data and here's a p value.