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Thanks for the quick response. I think maybe wait until they have further information rather than palguing them with more questions unless you particularly want answers. I was asking more out of curiosity than a need to know. It sounds like they are busy with getting the new study up and running...

Looks from the abstract like Great Ormond Street hospital, which is a specialist children's hospital in London, has written this article to pat themselves on the back for doing everything right, and tell everyone else how to do it. But it's paywalled, so we don't actually find out what they do...

Hi @josepdelafuente thank you for that very helpful report on how it works and how you're doing with it. I'm pleased to hear you got your PIP award and that has enabled you to reduce your workload and pace better and really feel the difference so quickly. From what you say it seems like heart...

I suspect they would just say they aren't interested in past problems with GET because NICE no longer recommends it.

My response to this questionniare is that if you weren't feeling miserable about your life with a long term condition at the start of the survey, you are likely to by the end with all those negative emotions being asked about, and the few positive ones being out of reach not because of feeling...

I have now been sent the second stage survey. I have filled it in simply because I wanted to make a note of the questions, which I forgot to do first time around. Here it is: 7. Living with a long-term condition It is normal to feel a range of emotions when living with a long-term physical...

@Andy, you and the team have done a fantastic job of providing a well run huge project and making it as accessible and straightforward as possible for people of all severities to participate in. Whatever the final outcome, you can all be very proud of your achievement. Thank you...

Thanks for listening to our concerns thoughtfully, @kacheston. Best wishes with the thesis.

Thank you, @kacheston for joining the discussion. It is great to have you here and to be able to clarify your intentions with us. I did read very carefully through your conclusions section before I commented critically. Your article presents well its central narrative of an illness first...

Hmm. I have just read the article. It is based around the first person stories of a journalist, Lucy Adams, who suffered from Long COVID in 2020 and Laura Hillenbrand's account of her early suffering with ME/CFS decades earlier. They draw parallels between them. The story of Lucy Adams is all...

Updating Cochrane Reviews An update of a Cochrane Review must involve a search for new studies. If any new studies are found, these must be added to the relevant section of the Cochrane Review and classified as included, excluded, or ongoing studies (or ‘Studies awaiting classification’ if all...

Withdrawal of published articles Cochrane Reviews Cochrane Reviews are withdrawn when serious issues with conduct or reporting are identified. Reasons for withdrawing a Cochrane Review or protocol: Serious error in a Cochrane Review. Following the conclusions of the published review could...

Noting here in case we need it: Cochrane Database of Systematic Reviews: editorial policies Author responsibilities | Authorship | Conflicts of interest | Reporting and conduct standards | Plagiarism | Peer review | Rejection and appeals | Data sharing | Co-publication | Copyright and licence...

Thanks @Caroline Struthers. If I understand it correctly, Cope is telling Cochrane that they can't just say we've decided not to investigate your complaint, they have to follow the process on the flow chart and have procedure set up to follow. Since we have submitted a 5 part complaint about...

Definitely not weird, unless I am too. I leave others to judge that about me. Pacing, for me, involves largely physical pacing, since my physical fatiguablity incapacitates me much more rapidly than cognitive fatiguability. I don't know whether there is a concept 'emotional fatiguabilty' but I...

Given the study was carried out by online recruitment and the patient's GP prescriblng the medication and questionnaire being submitted online, and lots of the before questionnaires being filled in retrospectively, and Bell scores only showing small levels of improvement which could equally well...

Was there a control group or any objective outcome measures. I haven't managed to read much, sorry.

I wish people like Putrino would write carefully worded statements with clear explanations on their websites rather than strings of tweets. So much confusion ensues.

Perhaps the larger number is to enable subgrouping once they have the biological data for all the patients before and after treatment. Given that it's not blinded, I'm not sure what the point is of having a separate comparison group for their biological testing.

The full text doesn't seem to be open access. It might be interesting to see a table of data. Given that there was no between group difference on any of the subscores, it must be irrelevant that there was a within group change on a couple of scores. That surely means the control group also...