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I wonder whether the protocol ever even reached the IAG for comment. The procedure set out by Cochrane had their editors and reviewers getting first comments. And rejection sounds very final. Not just asking for changes, rejection. Maybe Garner or someone else of that ilk was a peer reviewer...

I'm beyond words shocked by this. Cochrane have had the draft protocol for nearly 2 years and now this! No wonder things had gone so quiet in the last year. I hope the author team will publish the draft protocol themselves and Cochrane's explanation of the rejection.

Most of what is needed is in the NICE guidelines, so quoting from and referring to that gives a solid basis for recommendations.

That's a good point. I set the audiobook to just run for an hour.

Being a contrary person, I can't fall asleep to music. It either annoys me or has emotional associations that keep me awake. I fall asleep to audiobooks I've listened to multiple times already read by actors whose voices I find calming. Harry Potter books read by Steven Fry are most effective...

I find it strange that the abstract doesn't state what biometrics are monitored. I assume this is the Visible data, which as I understand it just monitors heart rate and heart rate variability, with patients subjectively recording their symptoms and activities. There is no objective monitoring...

Well done, @JohnTheJack. I hope this means you can get your home better insulated and heated.

This is depressingly awful.

I have only read the abstract. I don't understand the concept of 'poor symptom perception'. I thought the definition of symptom is what the person experiences. Do they mean the symptom as reported by the patient does not match the disease pathology as objectively measured?

I think this it relevant to men's and women's reporting of pain:https://www.theguardian.com/commentisfree/2024/oct/14/men-women-pain-school-period Guardian article includes use of menstrual pain simulators to teach men about the level of pain many women endure monthly. Quote: To men who still...

I doubt there will ever be total agreement over definition. Personally, for most of my years with mild to moderate ME/CFS, I would not have fitted this definition, because I didn't have significant cognitive problems except when in PEM. But I do have OI and pain as key parts of my ME/CFS along...

That's how I read it.

I bought that book with great hope that it would be really good. It was awful. Muddled and badly written.

For the UK, key names that should come up in the story are Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder, Esther Crawley. Also, in relation to denial of disabilty support for pwME, Waddell and Aylward. Links with the insurance industry, the Science Media Centre, The Oxford...

Film: The Tangled Story of ME/CFS From @Valerie Eliot Smith's blog: https://valerieeliotsmith.com/category/the-secret-files/ if you want to dig further about some secret files.

The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by David Marks Article | Thread Blog series: "Orthodoxy on trial: the pathogenesis of a diagnosis" by David Black

That looks like a very good motion to me. I can't see any reason why the current trustees would reject it. I wonder whether it's possible for the proposers to call an extraordinary general meeting to put it forward, or alternatively complain to the Charity Commission.

I prefer to call it psychobehavioural. There's nothing biological about these people's beliefs. It's all about blame based on our allegedly wrong thoughts and behaviours.

Asking about bouncing back from stress without specifying what sort of stress is ridiculous. The stress I think of could range from dropping a bowl of soup on the floor and having to use energy I don't have clearing it up, to someone close to me dying. The answers would be very different, and...

I think the perspective probably looks different on each side of the Atlantic. BPS is still very powerful in parts of Europe, and they're not giving up, digging their heels in with Long Covid as well as ME. There has been far less bio research in Europe than in the USA, and at least some of it...