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Cochrane seem to be drowning in procedures and processes and have long ago lost sight of the need for their reviews to actually make scientific, rational or any other sort of sense. It sort of reminds me of a novel I read some time ago where the main character was working in a department of a...

It's really sad that people misled into trying the powerful antibiotic have been harmed. I think it would have been more responsible for DrT to stay within the organisation and fight to have their potentially dangerous protocol closed down and the so called research stopped and money returned to...

I have read the whole article. I think it's an interesting and well researched article with some very good points, setting ME in the wider context of disability, gender and race discrimination. It's good to see Wessely and Sharpe and the whole PACE trial tribe being identified as harmful and...

Counting the number of symptoms seems to me a daft way of assessing disease existence and severity. What about severity of each symptom and impairment of function?

What we have struggled against is bad science. When a bunch of psychiatrists take control of the research funding and misuse it to twist research methodology to 'prove' they are right, and it suits governments, insurers and health services to support their myths, patients are harmed, regardless...

I've now found the page on the Cochrane website with all their Emeritus and Lifetime members listed and a bit about each emeritus member...

In the list of people awarded emeritus membership of Cochrane in 2023, a couple of familiar names: Paul Garner Hilda Bastian From the minutes of the Governing Board, August/Sept 2023 https://community.cochrane.org/organizational-info/people/governing-board/meetings/agenda-and-minutes...

From Cochrane's minutes of their Governing Board meeting in August/September 2023, an item which I assume refers to the review on this thread: https://community.cochrane.org/organizational-info/people/governing-board/meetings/agenda-and-minutes...

Actually I think even that isn't adequate because not all episodes of PEM are the same, so an individual trying from memory to summarise their PEM will lose the nuances which might be very important. I think the best ways of studying PEM are probably either longitudinal studies of a good...

I agree, @Ravn. It is surprisingly hard to describe my/our experience of PEM purely in terms of symptoms without either using imagery such as feeling like I have been run over by a steamroller, or parallels such as flu-like or biological explanations such as cells or muscles running out of...

I get that we don't know why muscles and brain become exhausted and lose efficient function quickly in ME/CFS. Another part of the puzzle that I think is even more puzzling is why pushing our exhausted muscles and/or brain to keep working through that exhaustion triggers not only immediate...

You may be right. I think it could be an imagery problem where I'm interpreting the use of the autopilot image differently from you. I think of the pilot as the brains and the plane as the muscle, and I'm saying I shower on autopilot in the sense that I'm not needing to use my brain more to...

Me too, Andy, except I would add - it gets worse the more I do, up to a point where I have to stop what I'm doing and don't feel the ability to initiate anything else. The effect is cumulatlve.

What about the experience of running out of energy during a task and having to stop? I don't know what is going on physiologically, but I know it feels like running out of energy, but it could, biologically, be something different I guess, perhaps something switching off like not enough nerve...

No, that's not quite right either. If I could stop after a minute or so and go and rest for half an hour before doing the next minute, that would be true, but the exhaustion, increasing weakness, pain, OI etc kicks in fast, it doesn't wait for me to complete the activity.

That doesn't seem to me to describe my experience at all. It's not about autopilot. I know very well the routine of, for example, having a shower, and do it on 'autopilot' but am completely exhausted by it. If I have a shower on the same day as one or two other activities of equal amount of...

I think the DSQ serves people with ME/CFS very badly. The list Andy quotes is far from PEM. It describes a mix of immediate fatiguability and PEF, and makes whatever is being described sound very mild. Where's the delay, the massive ramping up of all symptoms and the severe reduction in...

https://event.roseliassociates.com/me-cfs-research-roadmap/registration-2/ Next webinars: Less Studied Pathologies January 5, 2024 Less Studied Pathologies Circulation January 11, 2024 Circulation

Me too, especially since there was recent news in the UK about the shocking prevalence of senior male surgeons misusing their power over the careers of their junior female colleagues to force them into sex.

Ah, the old n = 1 gloating. I assume she also has your sympathy.