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Do you mean new things that you expect to come out? Can you say what?

I was hoping that a letter from Douhami or similar would be the reverse, but: Fair enough. I was hoping it would be possible to focus on saying that it's clearly biological, as opposed to 'not all in the head', because that would be a huge step forward from where we are now, but: This implies...

I'm all for leaving the past behind if we can and moving forward by building on the science but I'm still not seeing a map of how to get there. I think we agree on what we need - physician-led care - but physicians have to be convinced enough that this is a real disease worth treating, and...

That's a good question, because that's an exhausting part of the process for a PwME. It would be interesting to see what an engineer could come up with if the idea was not to provide a luxury experience with video and music and whatnot but the provision of a whole-body washing/drying machine...

I think there must be a huge market for people who are too disabled to wash themselves but I'm not sure this is the thing! I'd be scared of being locked in that pod forever, for starters, and I don't know how it's supposed to wash the bits of you that are in contact with the chair. Plus, I can't...

I think you and @Andy both raise the important issue that changes are needed in clinical care but surely things aren't moving forward in clinical care because the BPS model is dominant in clinical care? I agree with you that having a respected medic running a good clinical service would help...

I'm not suggesting an 'I was wrong' letter from big guns, but an 'I've looked at the evidence from DecodeME and it's clear that it removes any doubt that this is a biological disease needing proper medical care, research funding, etc.' letter. As you say, a lot of scientists have simply ignored...

It's hard to know how widely held the belief is but my idea of getting some big medical guns to make a statement is primarily to convince people in the medical profession, since they're the ones likely to read it and the ones who don't listen to anyone else. ME/CFS has been swept into the...

Discussion moved from the DecodeME preprint thread Any chance of him writing an article/paper saying he's persuaded? The more top-level medics we can get to do so, the more lives are going to be saved right now of dire-straits PwME struggling to get fed in hospital. What about even just...

I agree that it's open to question whether it's a good sign but it's a sign at least that pharma companies recognise a real disease when they see one, and presumably we're going to need their interest at some point...

@David Tuller quotes the Sick Times in that article: AFAIK, ME/CFS has never had a conference with pharma companies attending. I'm wondering how LC has got there in only a few years and we haven't managed it in decades - and how we get that to happen.

Thanks, that's interesting. It would be nice to have a handle on what it equates to but this is only idle curiosity on my part!

Do we know what that would be if it wasn't Bonferroni-corrected?

Kenny De Meirleir.

It has only just occurred to me to wonder why it would be of crucial importance to our understanding! Can you say why? Also wondering whether it makes sense to compare a random bunch of PwME to healthy controls, or to select a bunch of PwME who say they get fevers, and compare them to healthy...

This one. :)

I'm always a bit baffled about this focus on the use of social media by PwME.

How many PwME and controls do you think it would need?

So just, 'Do you get fevers? [Yes, confirmed by a measured raised temperature above 36.8°C / Yes, but not confirmed by that measurement / No]'? I'm thinking it's probably better to give people somewhere to dump their feverish feelings in case they feel that the tight definition of fever fits...

Can we make that happen?