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When I had mild ME/CFS I didn't consider myself disabled. Even now I much prefer saying I have a disabling illness. Of course I am disabled now, and in some contexts say so.

Ah yes I see what you mean. I assume it's referring to irritable bowel syndrome and attributing it to psychological factors, so yes, FND.

disorders of gut–brain interaction (DGBI), Defined at the start of the abstract.

The quote needs to be seen in context on the Abilify thread: https://www.s4me.info/threads/aripiprazole-abilify.16972/page-8#post-305117

I think the idea of a huge placebo effect comes from the rituximab trial, where some of the placebo group recovered, and some quack therapies like the Lightning process. I suspect a powerful placebo effect comes with all the performative and persuasive accompaniment to a clinical trial or...

Thank you, Jonathan Edwards, your rapid response is excellent. I bet Cochrane will ignore it. I hope others put additional pressure on them to explain themselves.

There is also the complication in interpreting data from an app like visible because pwME fill in their daily symptoms and severity, without necessarily attributing, for example, increased pain, to the cause, as I understand it. A lot of otherwise healthy women feel ill during their periods...

Have you been able to identify where the pressure was coming from? Was it just Larun and her boss at that stage, or had the Wessely, White, Glasziou, and other BPS crew piled in too?

I can see usefulness for severity scales as a quick way of conveying to a clinician how disabled you are, and as a way of tracking major changes in severity over time. The advantage of only needing to tick a single box on a one page document is significant for patients and can convey a lot also...

My point was more that by only raising Hilda's tragedy as a reason for delay, without mentioning that it in fact didn't delay the project and it was Cochrane's decisions that did deiay it, you leave the reader with the false conclusion that Hilda's tragedy was the major cause of delay. In fact...

Yes please, though I think the major reason given for the delay was the big reorganisation Cochrane was forced to make by cuts in funding. I don't think either Hilda's tragedy or the pandemic delayed the project significantly. It was Cochrane's decision to deprioritise the review process to the...

I quoted the bit about the earlier attempt to block the project in this post: https://www.s4me.info/threads/2025-the-2019-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-8#post-583019

I think it's a pretty good article in BMJ. The bit at the end that quotes our petition update at least raises the issue of influence:

That's quite a long and detailed report mainly focused on research funding. The section on what is already known about ME/CFS biology exaggerates the level of certainty, I think. It's an impressively presented document, and I congratulate the producers on their massive effort. I'm unclear who...

Unfortunately the link only take me to the paywalled version, and I can't access the pdf. I hope someone with access will do an accessible archive version for us.

I have made a thread that I've been updating of all the S4ME weekly news items on the review since 2019. Cochrane review of exercise therapy for CFS - a brief history from 2019 to 2022 and beyond Here's a copy of the relevant item: The Cochrane updates by Hilda were removed by Cochrane from...

This is a copy of the letter we sent to Cochrane detailing harms evidence. https://www.s4me.info/threads/s4me-2023-open-letter-to-cochrane-request-for-action-on-the-me-cfs-exercise-therapy-review.34973/page-2#post-521800

I don't have the energy to dig out answers on the talkpage and her latest blog. I have asked about both of these on the talkpage. My memory is that the report of criticisms wasn't ever published or put out for public comment as intended because Cochrane people in charge stopped this happening...

What a ridiculous questionnaire. What do you do if you like a mix of predictability and surprises? And what things are they meaning - predictablity of what I have for dinner, predictablity of whether a relationship will last, predictablity of war, predicability of whether my friend wlll like my...

I doubt I'll finish reading the paper after I came across this in the introductory section: To talk of the need for controllability and predictability as a 'personality trait' is ridiculous for pwME. The need to find a way to control our activity by pacing is driven by symptoms and is a...