TeamClots vs Cochrane

[EndME]

Sure. I should look back at what they wrote. I attended a meeting in July 2022 in Oxford where they presented their work and I got no impression they were pushing any treatment at all. They were very excited about their potential discovery, as is understandable.

Together with Dr. Laubscher they published a paper on Triple Therapy being a cure for LC by treating microclots. They have also spread this narrative on social media, so much that myself and other patients have tried to get access to Triple Therapy or H.E.L.P Apheresis and I know several patients who have pursued either both of these or one of these things in various countries (South Africa, Germany, US and in Cyprus there's even a LC microclot clinic). They sold their patent for "microclot detection" to Dr. Jordan Vaughn (a well known quack) and Dr. Beate Jäger. Both of these people treat people with LC with triple therapy/ H.E.L.P. Apheresis. They do so on the basis of a microclot test that has been confirmed to have absolutely no scientific validity (in fact it's an open secret amongst patients that everyone who sends their blood to Dr. Jordan Vaughn receives a microclot grading of 3.5/4 independently of whether they are healthy or not).

I think the microclot findings deserve proper studies and am very happy that these are indeed happening (in America, the UK and the Netherlands independently of the work by Pretorius et al) and I very much see that this work could be useful if properly conducted and I don't doubt that the review was motivated to shut down a biomedical theory independently of whether it might be useful or not, but I do fear that a lot of hype without doing the proper science first had also been created via social media, which of course might not at all be the teams fault and might just be the way social media always operates.

 

[Kitty]

I do fear that a lot of hype without doing the proper science first had also been created via social media, which of course might not at all be the teams fault and might just be the way social media always operates.

I'm not so sure about fault, since you only put multiple, positively-spun posts on social media if you're actively trying to hype something. They know that perfectly well. There are lots of people who're desperate to find something that helps, especially if their careers and mortgages are under threat. They also know that. It's difficult to believe they couldn't predict what would happen.

I think the microclot findings deserve proper studies and am very happy that these are indeed happening (in America, the UK and the Netherlands independently of the work by Pretorius et al) and I very much see that this work could be useful if properly conducted

Yes, I agree. If nothing else, it needs proving wrong.

Even if a negative result's inevitable because the theory isn't plausible, it's still useful to demonstrate it in a good trial to counter some of the hype.

 

[Caroline Struthers]

That's an interesting question. If I was to suggest to Cochrane that I could be part of a team to update a review on CBT for ME/CFS, should I not be allowed to because I have said that I don't believe that CBT cures ME/CFS?

Should the writing team on the promised new review of exercise therapy for ME/CFS not have included anyone with prior stated views about the topic?

Ideally yes. However, I think prior stated views that the previous review was very badly done and biased and should be withdrawn would be fine...but Cochrane would never allow that. Even NICE wouldn't admit the evidence supporting their previous guideline was missing. At least they made a decent fist of it once they overcame the BPS resistance to producing a new guideline at all. It's such a ridiculous mess.