Search results

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...

If only people then observed to see whether what they blocked and deleted was actually critique….. I haven’t read this but as Knoop involved I assume it centres on the delusion elucidated in the Heins eg al (2013) paper that it is some sort of ‘useful treatment’ to con people into saying they...

To ask an open question - because some of these orgs aren’t always actually ‘just patients’ who don’t have conflicts of interest etc do we know specifically who it is behind these rather than just ‘their claimed cause’? It wouldn’t be the first illness or cause where some of those who...

I'd say the disability-level is someone's threshold (vs where they were according to the disability scales) vs what happens when they breach that included in it. I assume that includes both as it measures 'amount of time' or wat you can and can't do etc. No matter how low that threshold, and...

Yes sorry I should have said that I was in agreement with what you were saing as gist, but 'being pedantic' on those points (just because I agree that is where it should be measured but really don't trust that lot - who've run old-style clinics - for encouraging 'robbing peter to pay paul...

But what about those people who are very sharp or fit to begin with but have really bad PEM - it is not unusual at all for someone to be able to 'perform' far better than normal people, yet be utterly debilitated due to it for very long periods of time. In fact one might say there are large...

In discussion: is what comes before that line: You might note that what is termed 'psychological therapies' is actually an often now 'embedded' communication technique which reframes what someone says (CBT, embedded CBT is being put through all sorts of professions and I have a real issue...