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I seem to remember watching a programme about iceland's genetic databases and them being a frontrunner for this area. I just wish I could remember the specifics - it was at the time of covid, but I can't even be sure whether the programme specifically related to that at any point. Anyway, so...

I'm really glad that you've been involved in this and bring that on-the-ground experience. I find/think the work towards developing physiological measures in a home environment one of the most important things in making sure we get to the bottom of the condition, but imagine it isn't 'the easy...

Thank you for confirming Sarah, it is interesting to just help try and get my head around/picture it. The more I think about it and try and do so the more complex I realise it all is for you :)

And there are big gaps there should not be just in as far as having a 'register' of those with ME currently and shockingly. We don't know 'how many', or even the amount who might need certain really serious interventions or different severities. We certainly don't have a log of prognosis or of...

It's also potentially 'entryism' https://en.wikipedia.org/wiki/Entryism particularly when you think about the tendency of those from BPS background to focus on climbing their way up through the committee and admin positions and collecting power. but I know what you are getting at and I...

It reminded me of this too @Arvo coild you write back and ask them to provide proof of when the decision was published? surely the 6 weeks can only begin once people have been able to see what decisions have been made - so their confirming and proving when these were published and access...

I think these statements are relevant to the current thread on developing PROMs on the basis it seems the ethics statements claim here if patients fill out a service evaluation it’s fair game to get used later in stuff like this ‘research’ if this is going to continue to be the case then such...

100% agree on trials. In fact this should be over e.g. 2yrs follow up (and someone should be able to come up with a way it is a 'pattern' downloaded so that privacy issues and blips are ironed out but you can see whether e.g. 6mnths after someone thinking they are doing better they then enter a...

I’m sorry I haven’t read your comment in full yet (but looking forward to doing so when I have a moment where I’m better set up to make the most of it :) I did get a moment of inspiration on the actimeter bit as reading through that part of your comment (eg PACE) that one thing worth adding...

Well put

https://www.s4me.info/threads/the-process-of-cbt-for-cfs-which-changes-in-perpetuating-cognitions-and-behaviour-are-related-to-a-reduction-in-fatigue-2013-knoop-et-al.24643/ I note this one which is actually Heins et al (2013) but has Knoop involved, and you can scroll down to see they actually...

sadly I think whether there were patients doing it or not and whether their content was dry, scientific and helpful or something else there would still be these claims and suggestions made by said people. It’s misogyny the same misogyny that says girls end up think because the internet or...

Thanks Sarah, I did do a quick read of his page and noted these things - and nice to have you confirm he is a top bloke and you know him well. I assumed his focus on this would, as those papers were, be the psychometric scale part. I thought it would be nice to get a sense of what the...

Thanks that is an interesting point, and you've flagged that I've missed taking it from that angle - and one which might well have merit given that one of the things pwme can feel they fall foul of is because of the nature being 'energy limiting' they can lose everything and then still be...

Hi Sarah, Nice to see you here and thanks for contributing and telling us about your background and experiences. Just so that I can contextualise this could you confirm what 'field' you are coming from when you are mentioning that this is better for 'offering effective services'. I think...

Agreed. I think that airing valid concerns on the basis of what has tended to happen historically isn't something that should raise an eyebrow when past history has shown the norm means these things are likely and need to be therefore raised and noted to at least note foreseeability issues. I...

I've had a quick look at Dr Mike Horton and notice this one as a recent paper he was contributor on. Does this give a sense of what he/you as a group might be looking at doing here with ME/CFS re: the psychometric type scales...

I'm sorry but how dare they use such a poor patient cohort and claim it representative. Not only should they be seeking those who are severe and representative - not just those who might be able to attend a service - BUT this is an old service that was offering treatment that more than likely...

I agree, and it is really nice to see things like this that are starting to focus on getting the magnitude and terminology right to stop the minimising and call out supposed inadvertent ablism or basically disability bigotry (which it sometimes is when they look at someone looking ill and enjoy...

I’d be eagle-eying the drop-outs on that one. To see whether what they achieved was using CBT as krypton factor to wheedle out the most severely fatigued. which achieves of course the same as the stats they’ve stated BUT the REAL effect if this IS what they’ve done would be the opposite to the...