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I find it very odd to see a Seasons greetings card filled with photos of trustees and senior staff. Very pseudo corporate or something.

One not to watch, I think.

I wonder what they will do about the S4ME complaints. Time for another one, if only any of us had the energy to compose and submit one to both Cochrane and the Charity Commission. I think I've reached the end of the road with composing letters to Cochrane. It's taken too much out of me. This...

I doubt she did the casting. She doesn't do the TV scripts.

A couple of days ago. A bit later than planned due to health etc.

Fantanstic news. Thanks to all involved.

Petition now at 12,749 signatures. It becomes even more vital that the 2019 review is withdrawn now that we have the shocking news that Cochrane have rejected the draft protocol for the new review.

Quoting from the letters thread:

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.