At least Cochrane are including patients/carers within the concept of ‘consumers’, though their current shenanigans in relation to the flawed CFS Exercise Review suggest they have a way to go to effectively put their policies into practice.
The link given takes me to 'page not found'. This link worked for me: https://community.cochrane.org/new-...your personal data?,giving your details to us.
List is here of all members, https://community.cochrane.org/organizational-info/people/editorial-board
Copying the list here, in case members here realise they know someone on the board. I think these are probably the decision-makers with respect to the 2019 review, so presumably some of these people are blocking its removal.
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 for publication | Updating Cochrane Reviews | Comments and complaints | Managing potentially problematic studies | Allegations of misconduct | Withdrawal of published articles | Publishing model and open access
Withdrawal of published articles Cochrane Reviews Cochrane Reviews are withdrawn when serious issues with conduct or reporting are identified.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 result in harm to patients or populations of interest (other than known adverse effects); and/or there are factual errors in describing one or more included studies that risk misinforming implementation or investment decisions about an intervention; and/or the reported treatment effect is inconsistent with the real effect shown in the reported data. The conclusions of a Cochrane Review are unreliable as a direct result of the retraction of an included study. This could occur if a study, or studies, included in a Cochrane Review are retracted from publication, and an analysis shows that the removal of the retracted studies from the analyses in the Cochrane Review has a major effect on the review. Also see: Cochrane policy on managing potentially problematic studies. Research misconduct in the Cochrane Review. This refers to misconduct during the conduct or reporting of the Cochrane Review. Serious breach of Cochrane’s conflict of interest policy. A ruling by Cochrane’s Research Integrity Editors and CoI Panel that a Cochrane Review has seriously breached Cochrane’s conflict of interest policy. Withdrawing a Cochrane Review generates a new version of the review with a new DOI. The withdrawn content remains accessible via the version history. Prior to July 2019, Cochrane Reviews were withdrawn for other reasons (e.g. the review no longer represented the best current evidence or it was superseded by another systematic review). Prior to March 2022, protocols were also withdrawn to inform readers that a protocol would not be progressed to the review stage. This is now indicated by the addition of an Editorial note to the protocol. Withdrawal followed by republication The Editors may accept for publication a revised version of a Cochrane Review that addresses the issues raised in the withdrawn notice. Any such version will be re-evaluated using standard Cochrane editorial process, and may then be approved for publication (as a separate, subsequent version) by the Editor in Chief in consultation with the Network Senior Editor.
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 reasonable efforts to classify it in one of these ways have failed), before labelling the revised Cochrane Review as an update. Any other change to a Cochrane Review, and any change to a Protocol for a Cochrane Review, is classified as an amendment. A Cochrane Review should be updated based on need. Aspects to consider are the currency of the question, the impact and usage of the current version, the availability of additional studies (or additional data for studies already included), and an assessment of the likely change of any newly identified studies or additional data on the current review version; in addition to methodological enhancements that may be required. Updated Cochrane Reviews acknowledge and cite the previous versions of the same Cochrane Review Authors need to complete a new licence for publication and declare relevant conflicts of interest for each update. Comments and complaints Comments on the content of a Cochrane Review, Protocol or Editorial can be submitted via the Cochrane Library. Concerns about policies, processes, or actions can be raised with the Editor in Chief through the complaints procedure. Comments Cochrane welcomes comments on Cochrane Reviews, protocols or Editorials published in the CDSR. Comments are welcome from all users of the Cochrane Library, including patients and consumers. Comments should be submitted via the Cochrane Library and may be published on the Cochrane Library. See Submitting comments Complaints Complaints could apply to the policies, processes, or actions of staff, contributors or position-holders within Cochrane who are involved in the publication or content of the Cochrane Library. Cochrane welcome complaints as they provide an opportunity for improvement, and aims to respond efficiently and constructively. Complaints are defined as an expression of unhappiness about a failure of process or an important misjudgement. The Editor in Chief of the Cochrane Library is responsible for this complaints procedure and will respond to queries about it. See: Cochrane Library complaints procedure Complaints procedure This procedure applies to complaints about the policies, processes, or actions of staff, contributors or position-holders within Cochrane who are involved in the publication or content of the Cochrane Library. We welcome complaints as they provide an opportunity for improvement, and we aim to respond efficiently and constructively. We define complaints as an expression of unhappiness about a failure of process or an important misjudgement. Comment or complaint? Concerns about the content of a Cochrane Review or Protocol should be submitted as a Comment, please follow our guidance on Submitting comments. The complaint process exists in parallel with the comments process and may be used either if you believe that the comment is of such a serious nature that urgent corrective action is warranted, or if you believe that the usual process has not been satisfactorily managed or resolved. How to complain All complaints should be sent to complaints@cochrane.org, where they will be dealt with confidentially. How we deal with complaints All complaints will be acknowledged within three working days. If possible a definitive response will be made within two weeks. If this is not possible an interim response will be given within two weeks. Further interim responses will be provided until the complaint is resolved. The Cochrane Database of Systematic Reviews is a member of the Committee on Publication Ethics (COPE), and Cochrane will be guided by COPE's core practices and guidelines when handling complaints. Complainants who remain dissatisfied after this procedure has run its course may consider referring the matter to COPE.
This post has been copied and discussion moved from Cochrane - Exercise therapy review - Hilda Bastian's Talkpage I don't know if people have seen this: https://www.nature.com/articles/d41586-023-02741-z A review of Cochrane's decline. It mentions editorial problems and related cosiness. And of course it quotes Paul Garner - the great authority on n=1, ouija boards and scuba diving.
No paywall for me, and I don't think my UCL link would have kicked in, although it might. Touch of the old mene mene tekel upharsin: But the writing had long been on the wall. A 2017 review of the NIHR’s investment in Cochrane found considerable differences in productivity and review quality between groups. It also noted that reviews were slow to produce, and that many published reviews were out of date or did not address priority topics. What’s more, the same specialist group that helped authors to produce a review would decide whether it was fit to publish, raising concerns within and outside Cochrane about editorial standards. (Cochrane has acknowledged many of these concerns in reports that highlight the need for reform.) Interesting perhaps that Cochrane is, however, probably going down the tube mostly for reasons nothing to do with poor quality evidence assessment - unless of course things filter through in smoke filled rooms somewhere and get presented with another slant.
The rest of the article maybe isn't that exciting. Sort of interviewing the goldfish in a goldfish bowl.
But why would they? We learned the evidence pyramid with systematic and meta reviews on the top, and that Cochrane provide "high quality evidence". Then it's easy to just accept whatever. Also process is slow. I'm not sure the "allowed nutrition statements" in Norway have been updated using the most recent Cochrane review on omega-3 fatty acids for example, the old one said omega-3s are good for the heart (so this can be used in advertising), the new one is not as positive. But as long as it's the old one that is in the recommendations... Both of those reviews also have flaws that are very frustrating when regulations are being based on them.
From what I hear there are problems much wider than just ME/CFS and pain/FM. People at NICE are aware of gerrymandering in reviews in surgery, obstetrics and all sorts. That is maybe where the BMJ editorial comes from. People at NIHR probably overlap a lot with people at NICE. Maybe it is just that governments don't really care any more but I don't think we can be sure.
This might be different depending on country, but when I've brought up shortcomings of Cochrane here in Norway I'm usually met with blank stares and "I didn't know that". The brand seem very strong over here.
Moved posts More gems fron CC! We have two programmes of work that our projects fit into: Learning and Development Programme We aim to provide training events and resources for all UK- and Ireland-based Cochrane contributors and others, who are interested in learning more about Cochrane, Cochrane Reviews and disseminating evidence. Engagement Programme We aim to disseminate Cochrane Reviews and other evidence to all our key audiences, through social media, events and other communications projects. To find out more, click on the projects in the left hand menu.
https://www.ouh.nhs.uk/services/consultants/ Check this out! Plus Evidence based medicine for 6th formers. https://www.youtube.com/watch?v=hrUU4aw_-d4 Useful contacts on this video. Engagement officer..
I have only listen to 5 mins enough and am grappling wirh the Dr Spock issue. My son was born on 1984 and suffered a severe viral bacterial virus infection at 8 months old. He was a persistent projective vomitter. He had a foam mattress. I later wondered about dust spores being released from this perfect breeding ground for germs. These mattresses were later implicated in sudden infant death syndrome. My son had post Viral symptoms/ allergy and intolerances from birth. He was diagnosed with ME in 1997, on my suggestion....
Cochrane UK in Oxford to close at the end of March 2024 https://uk.cochrane.org/news/cochrane-uk-oxford-close-end-march-2024
