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@Andy, I have similar reactions to the small parts I've managed to read. It feels like a step backwards from the NICE guideline in parts, not a step forward. This is not a criticism of the people with ME and carers who have put a lot of effort into contributing, more a recognition that once...

On every tier the emphasis is on 'willingness to change' and 'willingness to engage'. So it's set up with patient blaming attitudes from the clinicians from the start. How patronising and poisonous. And that double edged sword 'hope'. Great for those who recover and attribute their recovery to...

Do feel free to contact them to encourage them to give their support. I think it helps considerably if someone from the same country adds their voice.

The abstract in the published paper is slightly different from the preprint, cutting out criticisms of the frequentist approach such as 'However, the usability of p-values is plagued by many misconceptions and inherent pitfalls.' : Abstract Univariate analyses of metabolomics data currently...

I have just sent, with S4ME staff agreement, the following email to the following people at Cochrane: Karla Soares-Weiser, Editor in Chief Richard Morley, Consumer Engagement Officer Hilda Bastian, IAG leader With a copy to: Catherine Marshall co chair of the Governing Board _______________...

It will be interesting to hear how people are getting on with it now they have had more time and data to refine it. I gave up for 2 reasons. First, I found it very difficult to do the HRV measuring at consistent time each day, and second, neither my hrv nor the score the app calculated seemed to...

One of my favourite TV competion programs is the Great British Sewing Bee. Rewatching some series recently and this thread have made me itch to start sewing again, which is odd, as I never enjoyed it much first time around. We have at least 2 old sewing machines rusting in our garage, and...

Do they take arterial or venous blood for apheresis. If it's venous, then being more oxygenated might be a bad sign???

It sounds like anyone running cold water therapy should be getting people's hearts checked first.

I have a probem with this, as lying on my left causes pain in my hip and lower gut.

Not fast enough on this topic. And the worst offenders over many years are in a position to be training up new generations of people believing the same stuff. (And a reminder that another controversial Australian, Murdoch has just retired at 92).

@josepdelafuente, that sounds horrendous, and completely unprofessional of the interviewer. I hope it hasn't made you crash badly, and the outcome is better than the interview.

It really is horrific that a bunch of ignorant and irresponsible clinicians have such an influence over the media. We really do live in a post truth age. What on earth can we do?

Perhaps it's a bit like if someone is fatigued because of anaemia, then there is a simple blood test to show that their fatigue is caused by anaemia. As a result of having a simple blood test 3 things can happen: 1 the doctor prescribes iron supplements 2 if they don't work, the doctor...

As I would expect, ChatGPT can only parrot what it finds in this and other documents. It can't distinguish, for example, the claim in the article that this is a new approach from the fact that it's just the old discredited approach reheated. It's an interesting experiment, but until it can sort...

Some posts have been moved to a new thread: Does ME/CFS cause permanent damage? Discussion thread A post has been moved to a new thread: USA - NIH: Clinical trial to test immune modulation strategy for hospitalized covid-19 patients begins, Sept 2023

The ME Association have made their response available. From an email newsletter:

Very well summarised, Ravn. I've had a go at picking apart the abstract, which is wrong on every level, yet written to sound convincing: Referring to 'Chronic fatigue syndromes is a sneaky way of pretending all fatiguing illness that doesn't have an easily recognised biological basis can be...

As of yesterday, 24th September, Science for ME has still not received any response from Cochrane other than acknowledgement of receipt of emails. The page at Cochrane with updates on the IAG and the review process has still not been updated since August 2021. Stakeholder engagement in...

In using the term syndromes, I think they are deliberately creating the impression that any fatiguing illness without an established pathology is essentially the same, so they include ME/CFS, Long Covid, as well as burnout and other stress related problems. Then they assume it's all stress...