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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.

I have just submitted this complaint to Cochrane on behalf of the committee. In brief, it's a complaint that we have not been informed of the outcome of our previous complaints, contrary to Cochrane's own complaints policy. This also means we theoretically can't escalate our complaint to the...

Another stupid questionnaire study drawing false conclusions? I suspect guaranteed financial and practical support would lead to a reduction in anxiety far more effectively than psychological therapy for many sick people.

Edit: Responding to an edited post We should be wary of diagnosing someone's state of health on how they look on a short video clip. Many of us can look well when very ill. Think of how many of us are disbelieved by colleagues, clinicians, friends, even family we live with on the grounds that...

Hilda Bastian has just posted the following on her talkpage in response to some questions I asked there a few weeks ago. https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/ Coincidentally I'm expecting to submit to Cochrane tomorrow a further complaint from the committee about the...

Yes they are under COPE's rules.

As I understand it their protocols are about what sort of studies they will include, what they are going to use as the primary and secondary outcome measures, how the data from the studies will be combined and analysed etc. In other words it's a paper and mathematical exercise, not one that...

Cochrane doesn't do research on human subjects. It does systematic reviews of other people's published research. Therefore I can't see why they would have an ethics committee.

If anyone wants to check, Hilda's updates are archived here: https://web.archive.org/web/20240415215657/https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot