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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...

My memory was that she said it would be archived at Cochrane at the end of the project. Since the project has been cancelled, it's possible Cochrane don't want to house anything to do with it. I don't know how much is was used or what for, but my communications on it tended to be either sorting...

I'm not clear which email correspondence you are referring to here. Can you clarify?

Thanks, yes, I'm aware of that, and do it to the extent that I can, but it's impossible in many activities such as having an shower or washing dishes. And it would actually add more energy cost if an activity that takes more than 30 seconds takes place in a room without a bed to lie on in the...

Maybe that's why I can't do it without crashing. I'm already at my limit for the day with what I need to do physically, so there's no spare capacity for strengthening exercises.

That sounds like what the Workwelll people advise too, though I think they tell people to start with less than 30 seconds before resting.

I think it's best if we leave Edinburgh and/or Action for ME who are working with Chris Ponting on his research to set up an appeal when and if they are ready, and for the forum to advertise that appeal in our fundraising forum in the usual way. If someone wants to take action now, they could...

Anyone can already donate directly to Chris Ponting's research. I'm sure we have a link somewhere on the forum, someone will find it.

We've seen examples on this forum of studies that purported to improve or cure irritable bowel syndrome and so called functional epilepsy with CBT. I recall that in both cases the physical symptoms did not improve, it was just the patients had been taught to fill in the questionnaires...

I think a lot of us have experienced this. Some it's because they have been subjected to graded exercise therapy where they are expected to do a bit more each week, and push through if they crash, so it promotes repetitive crashing and ends up worsening. Some of us because we try to hold down...

Week beginning 30th December 2024 Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review Update: On Cochrane's excuses for scrapping the replacement review process they set up: Part 1 This part examines the first excuse given by Cochrane, a lack of resources...

Some posts have been moved to: USA: The RECOVER Initiative - Long Covid research

Yes please.