Search results

Sorry, I gave the impression that I was addressing you when I was talking about the 50% but you had indeed not expressed any scepticism about it and I was addressing the scepticism elsewhere on the thread in order to lead up to my point about how bringing in LC could bring wider support. I...

Sure have but are any in the UK? And if they are, how can they get funding to support themselves if the reviewers at the MRC are still barking?

But don't the studies that look at it look at PEM as a criterion (which you said you didn't have, I think)?

I was lazily relying on this meta-analysis, but are the studies all poor-quality? If they are, do we have any better studies that would suggest that a low proportion of PwLC have ME? [Edit: Dubbo came up with 11% or so after other viruses such as EBV.]

I understand your concern but ME/CFS has been failing to get research funding forever, and getting a bigger group calling for funding could be a very good move. I'm surprised to see such scepticism on the 50% figure for the number of PwLC who fit an ME diagnosis, given that we were all warning...

I'm surprised this is going down so badly here. We have to build research capacity. Yes, money can get wasted in things like this (RECOVER!) but wouldn't this be a great opportunity for S4ME to get stuck in and show the world how science-involved patients can lead the way? Have we all gone a...

That's great, and very exciting for us! Thank you for getting involved.

Those are all very good points but I'm hoping we can still help @paulendat find a way forward. Any thoughts?

I take your point but @paulendat is faced with 1,000 self-diagnosed people on the Internet. How can he apply a filter so that he gets the people he needs? Could he, for example, use certain questions from DecodeME? Then his findings could be linked with DecodeME's genetic findings via...

That's correct, ME/CFS is diagnosed on the basis of patients reporting symptoms - there is no diagnostic test.

Excellent idea! And thanks so much again to @paulendat for this offer.

A lot might be interested, though, and able to watch or even just listen passively - and some might also be able to actively engage. And not all here have ME - some are carers or interested scientists, who wouldn't have those limitations. I agree this is a very generous offer.

Perhaps we here could help by suggesting what might be a good screening questionnaire, if @paulendat is interested. And maybe one specifically about PEM. (I'm not offering, I don't know!)

That's good news! Is the programme still giving out new grants?

Weren't all those RECOVER grants cancelled by the new administration?

Thread here.

All one word, 'PrecisionLife' - here's a thread on it.

I'm all for it! I am basically 5 years old as far as understanding biology goes, brain fog or not! Great idea, @jnmaciuch :thumbup:

You've said elsewhere that we won't be able to say that ME/CFS is a disease, rather than an illness, until we can demonstrate pathology. If researchers reliably show that there's an identifiable genetic component, can we call it a disease? If so, does this Zhang study allow us to do that, or do...

Thanks, @jnmaciuch, I'll have a look!