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So far 401 people who signed the petition have also added a comment. I have read them all, and thank those who have commented. They make a powerful testimony to the harm that GET has caused to so many. I hope the people at Cochrane with the power to withdraw the 2019 Larun et al review...

The doctors with long covid described in this article have my sympathy. I understand that doctors were the intended subject of the article, but it concerns me that there is barely a mention of the nurses and other staff who were also subjected to the same very high exposure on Covid wards and...

A follow up email has been sent with details of the petition: https://www.s4me.info/threads/s4me-2023-open-letter-to-cochrane-request-for-action-on-the-me-cfs-exercise-therapy-review.34973/#post-494725 It also links the letter thread with all the signatories.

Thanks for continuing to work on this, @MBailey. A good outcome if not the ideal one of leaving the RR unchanged. Well done.

EBM = Extraordinarily Batshit-crazy Medicine. It would be funny if it weren't for the shocking amount of harm it causes. Reading this in the same week as all the hundreds of messages on our petition with personal testimonies of lives ruined by GET, and hearing of cases of malnutrition not being...

It is concerning how dogmatically convinced Dr Arroll is in his misinformation. I can't understand how anyone can be so one sided unless they have a personal vested interest, or have no clue about ME/CFS and research methodology. It would be an interesting study finding out how individual...

@Andy, can you clarify?

I don't have anything useful to add medically, just to wish you well and hope the doctor can find a useful way forward for you. My IBS symptoms seem to be directly related to my diet, so once you have, hopefully, had more serious problems ruled out, a dietician may be able to help.

I think the difficulty is that they have to have been diagnosed with ME/CFS as well. I don't think that's happening very often, even if they fit the criteria.

Kenny De Meirleir, one of the speakers at the event listed above. I know very little about him, but I gather his work on ME/CFS is controversial...

I think the team have done a fantastic job getting as many participants as they have so far. There are so many reasons why people may hesitate about giving their DNA, and the effort of actually signing up and providing the sample and sending it off is more than some want to manage. The pandemic...

Time for the whole Cochrane edifice to close down as a failed experiment. It was never going to produce good science by letting any team who wanted to do the reviews, giving writing teams greater power than editors over withdrawal of reviews, and creating methodology for reviews that didn't...

I found it myself. It was the awful Reuter's article by Kate Kelland that said Cochrane had withdrawn the review back in 2018 and Clare Gerada was all over Twitter insulting patients, including me...

I don't recall loud public threats if Cochrane withdraw the review, @rvallee. Can you reference that?

It was sent by email on 30th August. It's now 18th September, so about 3 weeks ago.

I have just been re-reading this article by Hilda Bastian and some of the discussion about it. 'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian February 2019 It clearly doesn't matter so much after all, at least to Cochrane, if the...

I have reported it. If anyone sees a threatening or otherwise offensive comment on the petition, please do use the report button on the petition to report it.

DecodeME could run such a survey themselves by settiing it up on SurveyMonkey and inviting everyone by email who hasn't sent their spit kit to fill it in, and to give their details on the survey if they would like help such as sending a new kit. I doubt that is necessary, since I expect the...

I'm not sure we have any evidence anyone at Cochrane trying to move this forward, or in which direction. If there were, they have been astoundingly ineffective. Or perhaps they have been very effective, if their aim was to block the new review. If Karla Soares-Weiser had been serious about the...

The announcement seems remarkably short on information.. All it says at the link is: Long COVID Hour w/ Stephen from Post-Viral Trials News