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So it's not really a clinical trial at all, it's a collection of clinic reports not carried out under clinical trial conditions, just like we had on aripiprazole from the Stanford clinic which was completely useless, with very erratic followups etc.

It's too soon to say what processes Cochrane will go through with our formal complaint as we submitted it less than 2 weeks ago. The website says we should get at least an initial response in 2 weeks, than regular updates on progress if it is going to take longer.

Have they registered a protocol on the Clinical Trials website?

I'm sure we all echo that. We have a condolences thread here if anyone wants to add a comment.

I don't think that study showed understanding of PEM.

I had forgotten or not realised they only managed 17 patients. I had it in my head they did 27 which is bad enough. Add to that and some weren't well enough to do all the tests, and you have nothing. I really feel for people who have been relying on this to bring good news. Such a let down. It's...

I think what will happen is the old harmful review will stay in place for several more years, with another useless editors note attached saying a bit more about it being due to be replaced sometime. The process for getting a new review to publication and past all the hurdles looks likely, from...

Surely it's a spoof. No one could seriously write that way.

There hasn't been much in the Inquiry so far on Long Covid. The first module a few months ago was on pre pandemic preparation, and the current one is focused on the initial response in the first few months of the pandemic.

I suspect the complaint was from all the 51 signatories of the anti NICE brigade paper led by White. And it will have been long and detailed in order to cause as much delay as possible. NICE had the sense to see through them. Sadly Cochrane is in their pockets.

And worse than that, the whole project is shut down for, it seems 2 years, by the fact that complaints were being considered in Cochrane's ridiculously beaurocratic way. Considering a complaint should have had no impact on the process of preparing a new review proceeding. It's utterly ridiculous.

So why didn't they tell us that they had already had a complaint asking for the 2019 review to be withdrawn and had taken a year to consider and dismiss it?

Moved from the petition thread. Quite a lot to take in. From a first reading, delays were caused by first the pandemic taking some of the Cochrane employed people off this project onto Covid related projects, then a major complaint from the supporters of GET about the plans for a new review, as...

The endless need to keep publishing and to keep providing data for postgrad students to use for their 'research'. What a waste of everyone's time and money and so unethical.

I think the bit about not knowing whether he had ampligen or placebo rather defeats the purpose of making any social media report on effectiveness. We'll have to wait until the data is unblinded and the results are published.

I agree the introduction of 'push and crash cycle' into this section is unhelpful, though at least it's better than 'boom and bust'. PEM does lead to reduced exercise capacity for a short or long period, but the reduced exercise capacity is always there, whether you've pushed and crashed or not...

Brilliant, well done, @Grigor. Thank you.

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I'm afraid such motions are ten a penny. Simply an MP attempting to garner votes from their constituents by highlighting local projects. I doubt it will achieve anything.

I'm not clear whether this is a national or international project, and if national, which country. I am very much in favour of such projects if well done, but a bit concerned about duplication of effort with several people developing similar apps, all with different diagnostic, symptom and...