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2023 Week beginning 20th March 2023 Trial by Error by David Tuller What the Hell is Going on with Cochrane's Long-Delayed Re-Review of "Exercise Therapies"? A great summary about the missing progress at Cochrane concerning their review on exercise as ME treatment. "It is more than three years...

Hi @Megsyjenks, welcome to the forum. I had a quick look and found these threads: Recommend soft safe earplugs, such as a soft medical grade silicone that immediately returns to its default manufactured shape [edited] Noise cancelling headphones! Oh Joy! (and other ways to block sound) Help...

I think your comment was correct. In Hilda Bastian's update on the IAG in August 2021 she said this: And continues on about the process in some datail...

Indeed, an excellent comment, thank you Peter. I hope you don't mind, I've copied it to post here: Peter Trewhitt 5 hours ago In 2020, following further concerns and complaints, Cochrane announced the start of a completely new review process but delegated any response to the issues already...

That concerns me too. By sitting on the same platform as quacks and when that platform belongs to the quacks, they give credibility to the quackery too.

Those metaphors about flood and fire are utterly ridiculous and insulting. Like you, Hutan, I continued with my normal life as best I could when I got ME, to my long term detriment. On the other hand when I got what was probably glandular fever some years earlier, I was bedbound for six months...

Not necessarily. If, for example, autism is caused by a genetic or environmental factor such as an infection, then that factor or group of factors might also cause or predispose to life shortening problems unrelated to autism. Or, as has already been pointed out, autism is likely to make access...

While I agree with all the points well made by Hutan and others, I do think, while Cochrane still exists and is regarded at least by some clinicians as providing gold standard reviews, we need high quality unbiased reviews of the evidence related to exercise therapy and CBT for ME/CFS. If both...

A copy of the whole email: Solve Advocacy: Emily Taylor Reports on Efforts to Form New Disease Coalition Energy Saving Summary Read: Solve’s Emily Taylor shares insights on building an infection-associated chronic conditions coalition Register: October 24 national webinar to feature findings...

Thanks Peter, yes, I noted that it has been going on since 2015 in the attachment to the letter and linked the history, and commented that it had been revised 5 times. Good to remind us this has been going on so long.

Well, they did end with 'King regards...

And they describe it as a research team presenting new research. I mean what the...? No sign of any new research in any of their verbiage, just unsubstantiated opinion based on prejudice.

Many thanks to #MEAction UK who have now added their support to the letter and are spreading the word about the petition on social media.

Thanks Andy. The petition is still necessary and worth promoting, as the reply makes no mention of when and indeed whether the 2019 Larun et al review will be removed.

This has just come by email from the editor in chief of Cochrane: _________________ Dear members of the Science for ME Committee and Forum, Thank you for your email and sharing the open letter and petition. After an unplanned hiatus, the Independent Advisory Group resumed its work last month...

I have just received this reply from the office of the editor in chief: _____________________ Dear members of the Science for ME Committee and Forum, Thank you for your email and sharing the open letter and petition. After an unplanned hiatus, the Independent Advisory Group resumed its work...

He's sounding more and more like Michael Sharpe. 'uninformed knee jerk comments' 'may not have read it', 'fresh perspective' ... I'm not allowed to say what I want to say ...

Did you send them a link to the Norwegian LP and ME site: https://lp-fortellinger.no/en/lp-stories/ Even though it's people with ME rather than long covid, that should give them a pretty good idea of how awful LP is.

I had a phone call a week ago saying they were coming that day to give me my Covid vaccination, then another call later in the day saying sorry, we didn't manage to get to you today. Nothing since. They are not doing both at once as flu vaccine won't be available here until November.

Having not got around to this until now, given my diversion into challenging Cochrane, I decided today that the only way I'm going to do it is in one single go. I've therefore spent some hours wading through it all and filling in the online questionnaire and submitted it. I have to say it's...