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Ha, yes, I just saw that. go to this thread to discusss Riley's resignation: https://www.s4me.info/threads/united-kingdom-me-association-governance-issues.42093/page-66#post-591834

Does anyone have any information about what is happening with this project?

If you read part 1 of our complaint, it seems clear to me that Cochrane have broken their own rules about when to create a new citation. Cochrane's response: "Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding...

Thanks.

If the review doesn't recommend for or against exercise they should be willing to attach an editorial note saying the review should not be used as evidence for clinical care. Edited.

I find the above justification of the new citation totally ridiculous. And it's another anonymous letter. Sigh. So now another appeal to be written and submitted. Don't know why we bother really. They are treating people with ME/CFS with contempt.

Just checked my emails and found the response to our complaint: This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024. A copy of the complaint was posted here...

As posted on the Letters and complaints locked thread: _______________ This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024. A copy of the complaint was posted here...

This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024. A copy of the complaint was posted here...

That sounds really sensible, boolybooly, but it's not as straighforward as you suggest. I am also a teacher, but while continuing to teach part time with mildish ME/CFS for over a decade, I didn't find my colleagues or bosses interested in learning about my experience or symptoms. None asked...

The others were controls.

The whole article seems to me to be based on self righteous judgemental attitudes held by people with the good fortune not to have to struggle with their society's misunderstanding of the wide range of human experience. And people mistaking their own interpretation of one person's experience as...

Still a version of GET, pacing up or whatever. It's revealing that those who don't recover are blamed.

Some posts have been moved to: Noise cancelling headphones! Oh Joy! (and other ways to block sound)

I've lost the plot somewhere. What is AR1?

Makes a change from the Polish study of putting people in a refrigerator. Maybe next it will be alternate heat and cold. Sounds like try anything therapy.

Blimey, that is seriously wrong on every count. It's gobsmackingly bad.

Thanks @DigitalDrifter and @Yann04. I agree very severe ME/CFS needs to have at least one other category, for which profound or extremely severe sound like good names. I also agree it's important this is recognised in information materials. I hope we'll do better when we write our factsheets.

What on earth is the point, apart from making money?

Not everyone with ME/CFS gets sore throats as a symptom, though it appears on some lists of possible ME/CFS symptoms and some report it particularly when in PEM.