USA: News from Solve ME

[SugarSquared]

I was actually thinking about your posts on r/cfs after writing this. It's so great you're active on there. Agree with your concerns. And I know when my views change on things it's mostly from gentle exposure, not one argument, so sounds like you've got the balance just right.

This really means a lot, thank you.

I’m much less active than I used to be. It was so important to me when I was early in my illness. I don’t need it as much, but I still want to give back to the community that helped me. I just hope I can help some people get interested in the science like me.

 

[wingate]

@Hutan - Thanks for your efforts with Emily and Solve. It’s disappointing to hear that Emily did not seem moved by these legitimate concerns about study design and investment in open label studies with subjective outcomes.

There is a wide gap between the awareness of these issues on this forum and other social media channels where there is much less critique and skepticism. I wonder what can be done about that. I don’t know what the solution is, whether it involves continuing to invite advocates and researchers to the forum, finding more ways to spread our discussions outside the forum, etc. But there does seem to be quite a disconnect.

 

[Hutan]

Lately I read here that most likely the majority of studies are not to be taken seriously. Pretty bleak picture if you ask me.

I don't see things as bleak at all. There are lots of good things happening. It just would be great if the patient charities were contributing to those good things and contributing to ensuring the patient community are well-informed consumers of treatments. Because we all want to get to a better understanding of the illness as fast as possible.

 

[Jonathan Edwards]

Lately I read here that most likely the majority of studies are not to be taken seriously. Pretty bleak picture if you ask me.

This is the first thing you learn in biomedical science @mariovitali. Most studies are junk. But there is nothing bleak about that. You realise how easy it would be to do better and then after a while you find you can.

 

[Utsikt]

It is hard to understand why people struggle to understand how biased, and therefore how useless, an open label trial with subjective outcomes is. They seem to be being influenced by patients contacting them saying how wonderful, how life-changing these treatments have been.

Thank you for your efforts, Hutan. And thank you to solve for being willing to meet.

I have seen the same happening elsewhere. And it’s not just advocacy or funders. It’s one of the reasons for why health care practitioners push their treatments - because they believe they’ve seen it work and people tell them it works.

None of the ones I have spoken to have been able to give logically coherent answers about how they can know it works based on the data they have. It usually ends up with them admitting that we strictly speaking do not have proof of causality, while still maintaining that it’s fine to say that «some benefit» or something else that implies causation because that’s what the patients reported. One of those people is involved in distributing tens of millions of euros in research funding annually..

@ScoutB that’s a perfect description of my experience as well.