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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Withdrawal of published articles Cochrane Reviews Cochrane Reviews are withdrawn when serious issues with conduct or reporting are identified.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...

Exercise therapy for chronic fatigue syndrome Lillebeth Larun Kjetil G Brurberg Jan Odgaard-Jensen Jonathan R Price Authors' declarations of interest Version published: 02 October 2019 Version history https://doi.org/10.1002/14651858.CD003200.pub8 ____________________ I don't have the...

As I understand it, the biobank data is anonymised, so a company buying the biobank data won't allow the company to find out an individual client's data. They will however, use the mass of data to work out probablilities they use for calculating risks their clients have of getting an illness if...

I've just listened. It's a journalistic version of a 'deep dive' into a subject that fails because they don't really understand what they are talking about. Their sources seem to be other journalists and their friends, so the bit about CBT and GET helping some people so should still be offered...

The thread has been merged with newer threads with publication of the research based on the questionnaire: https://www.s4me.info/threads/assessing-functional-capacity-in-me-cfs-a-patient-informed-questionnaire-2023-sommerfelt-et-al.35464/

What are LFT's? Edit: I realised moments after posting: Lateral Flow Tests.