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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...

It was an example of how easy it is for good intentions to completely miss the need issue and how precision of understanding exactly what the situation is in order for something to actually be a solution rather than rubbing it in as someone not only not being heard but also their desperate...

But how do you know @Hutan ? Using the 'feasibility principle' for proposed conclusions is unfortunately a classic trap we all get bound by from bystanders - it isn't the same as them being definitely what these people said. And when you are in such a precarious position those 'small...

You mean like “we’ve funded for someone to teach you mental coping techniques for when you can’t get food due to being unable to move your body and debilitated” instead of sorting them being fed is just utter stupidity and bigotry on all levels and people shouldn’t be allowed to pretend they are...

In a theoretical hardball strategy you also need to start unpicking the psychosomatics so they no longer have jobs and kingdoms ie follow-through right to the end once they’ve been found out or picked up on something. If it were the other way around such people wouldn’t hesitate to ensure there...

I’d go so far as the issue being useless people getting funded because some of it is in the workload model for a role I assume is tenured. Some of it should look at how bad someone’s research has been the past on basic quality and require said people will only get funded if they demonstrate...

Not hard to believe with Chalder one bit

Hmmm I recently in last six month got into this guys blog so was pleased he’d got a column. but is this showing a big change of tone to what expected on reading this? I’m tired so haven’t been able to mentally analyse as I might the points he makes in ridiculousness of listening to patients or...

Absolutely agree. This is not upfront and given its psych stuff surely should particularly be a major ethics issue.