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Posts discussing names for ME/CFS have been moved to: Diagnosis of ME and the use of the labels ME and CFS.

The thing that surprised me in this article was not the stuff about pain, which I have seen before, but the bit about women being made to wait longer in emergency departments.

We haven't given up on this campaign. The forum committee sent another letter today to Cochrane Complaints. It's posted here: https://www.s4me.info/threads/s4me-2023-open-letter-to-cochrane-request-for-action-on-the-me-cfs-exercise-therapy-review.34973/page-2#post-547317 To summarise, we...

Thank you, @Naomi10. An excellent article, and so tragic it is needed.

I'd steer well clear of anything medical on YouTube. Even doctors with strings of qualifications are putting out all sorts of unfounded theories and rubbish. And as others have said, anyone can call themselves a therapist. I'd also steer clear of the neuroplasticity and mind/body stuff you...

The World Health Organisation advises strongly against using people's names for diseases. https://www.who.int/news/item/08-05-2015-who-issues-best-practices-for-naming-new-human-infectious-diseases

Can you clarify? You are suggesting McE and Beard may have been right that it was mass hysteria, but do you mean: a) the people were sick, and it was 'mass hysteria' in the sense that the doctors told them it was neurlogical when it wasn't, in other words, mass misdiagnosis or b) that it was...

Thanks, @MSEsperanza, I have read the 4 reviews, all positive. Many thanks to the reviewers. The peer approval note says: @Jonathan Edwards, will your proposed amendments to the article mean it has to go through peer review again, and if it passes peer review again will that mean a journal...

Good letters, thanks to everyone who submitted letters.

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...