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Agree with the other comments. It seems made after trying so hard for so long to get strict definitions and a clear criteria for what the condition we currently call ME/CFS is, that our own representatives and advocates then muddy the water. On the prevalence and economic impact numbers it’s...

That’s very positive. Anything more you can say now? Will we hear more from official channels or is this more a general vibe check?

Agreed, it’s a bit of a weird criticism that patients don’t know what they want. No patient group is unified in what they want. And yet we get it more often aimed at us, for the simple reason that those who should know what the best thing for us don’t. As ever this is down to a failure of the...

Only because people say it with no evidence. If they have evidence show us. It’s usually though instances like this, where someone is making money out of, as you say, people who are desperate. That is IMHO very very wrong. But we won’t know they work until there is a trial. And the people...

Yeah, which is why I agree with @Trish that the complaint being on record is useful and that getting a clear message Ike I outlined to government, MPs and via charities is useful. Then people can’t say this was unexpected or nobody told them. Agree it’s probably not the biggest focus and you...

Okay I see the shape of the argument. Heritage is claiming to study the effectiveness of services vs non services We already know from the extensive NICE led analysis of the evidence base that the current model of rehabilitation based services is ineffective There are additional problems with...

I didn’t think NICE had been involved again? I must have missed that. Can you tell us more, it may be useful. Yeah, particularly if dealing with (political) decision makers!

That is a great argument though. It fits in with the ignored population argument. I do think we need to be able to clearly explain why expanding the rehab based services to this ignored population is inappropriate though.

Surely that is not a convincing argument to someone who has been briefed ‘we are comparing services to no services’

I was thinking it would be useful to have a clear argument to make to people not as informed on this as to why the study is problematic, like when speaking to MPs for instance. Or indeed patients, charities or anyone holding the study up as an example of ‘something being done’. So I like and...

Go for it https://s4me.info/threads/asking-uk-mps-to-get-behind-funding-sequenceme-and-wider-investment.45551/ I really would encourage everyone reading this thread to do anything they can. IMHO there is never a right or wrong time. If anyone wants to do something just do it. Instead of writing...

It was definitely a mistake and I’m very interested in how it came about and who made the mistake. More interested in just getting the funding but still, it was all very odd. The way the funding was given but in a very specific way looks like some people wanted to fund it and some others (be...

Good point. Worth pulling together the different strands and having a clear concise picture of what the problems are and if we can’t get that, why it’s a problem we can’t.

That’s reassuring. I had hoped (maybe naively in a hope over experience way) that some of these studies could show that the current model doesn’t work (no difference between intervention and no intervention) but its become clear that’s not what they’re trying to do. That there is more...

It is weird. I get why having systems monitoring control is useful but not the connection to the wider internet part. I think sometimes it now comes down to that just being seen as the easiest way to do it. But it really isn’t hard or expensive to setup a private network as you say. Maybe some...

So you’re telling me this is going to kill the surveillance state, break the advertising revenue Google and Facebook depend upon and Anthropic and OpenAI are going to go bankrupt?

Yeah there’s a lot of debate. I’ve been following what I can. I think a lot is overblown to be honest and certainly nothing near self improvement or even as significant as some claim. This looks like another case of something interesting but nothing that a human couldn’t do. Or indeed a smaller...

The pesticide in question https://en.wikipedia.org/wiki/Chlorpyrifos Another there has been a lot of discussion about has been https://en.wikipedia.org/wiki/Paraquat

I agree a lot of these numbers seem to be people trying to (for good reason) make things sound important, but in inflating claims they undermine because nobody takes it seriously. Better to take a conservative approach and then go for ‘at least’. So I did some quick numbers, if we just look at...

And Google have already shown they’re destroying their ad business. Do Facebook next! They’ll try and replace it of course but if we’re all running non frontier models.