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Indeed the power of having these tools when they were being developed/coming online was supposed to be studying patterns reactions and using additive and subtractive tasks in order to identify individual smaller component aspects. goodness knows for example why they can’t look at someone with...

Or being over threshold just due to the discomfort of getting there and lying in scanner, maybe also being in PEM I get very antsy with this rewriting of a function which signals a body under physical stress ie doing more exertion than is ideal or in pain due to stimulus that isn’t doing much...

Did they manage to make the assessment’blind’ without ‘face fits’ demographic info? That is often there in abstracts on these ‘new confitions’ to help front line staff know how many and what type of people they should be on the look out for.

When you’ve mentioned previously and rightly the HIV/AIDS research model of “nothing about us without us” how much did doing it the right way actually cost vs money wasted (in ME/CFS) on bad research, bad kingdoms and embedded therapies across all sorts of areas over/multiplied by how many...

Yep. If it was in the common sense, does what it says in the tin language and method ecpected if business literature this one would surely be: do the people the medical profession single out and chuck under these horrible buckets fir bad treatment suffer more? Yes does it lead to really bad...

to be fair I thought one big part of the answer was already known to this: it’s about how well set-up those who go into these ‘critical events’ already are with regards a decent support network (NOT ‘therapy’ just do you have people to lean on who will help and get it) and if you are...

True, need more info. Also given the investigators are the ones who categorised indeed who knows what is in the FSS group. I highly doubt that the label is anymore that one tiny factor in explaining any differences in the measures they have used given the vast differences we know about whether...

It is stunning isn't when you read this and realise these people believe that their 'effect' is actually real rather than just responses to their questionnaire, rather than another measure that should be being triangulated with other things. I'm continually astounded how these people hug to...

If that is their process then it should be written down as such. So that such policies can be viewed and judged, as well as followed by them consistently across all complaints as relevant (noting there need to be e.g. ones that deal with relevant conflicts of interest where those who normally...

Irony when you compare it with the fact that those doing the research have slap-dashed the methodology and the literature. And that of course one of the issues is perhaps that this is ‘par for the course’ because the timeframe to get it done and perhaps student already exhausted plus they’ve got...

There is a major issue here when we combine thinking like this - which I can see how they have convinced themselves of what they are saying not being fallacial - with NOT actively courting a programme of genuinely proper expert patients. And indeed spending just as much time and money and...

I was going to say until I got to the second sentence of the second para: if having Hoover's sign is how you define 'having FND' then of course you've given yourself a can't lose situation on that measure because what confirms 'that designation to the negative category was correct' is also the...

and worse you don't even notice it (or don't notice how bad it will be as you think it feels a bit bad, but don't know the half of it until 6months a year later speaking from experience) a the time. Because you can't imagine it and can't know where your body is in the scale vs 'how much' is...

I wonder whether this is another area that flags the issue brought up on another thread where exploratory and descriptive research is underfunded - albeit it surely would need close attention from funders to still have defined goals and points to the investigation and definitely standards that...

Yep they sort of need to get, somehow, 200 people in who have the Hoover's sign and check longitudinally it isn't explained by something else without an FND diagnosis that means such investigations and follow-up and annotating as history doesn't happen. Of course that latter part of the...

Yes just because it is exercise - and has been done to the point of proving no more trials are needed, but was counter-intuitive in the first place unless your job happens to be in pushing it - doesn't make it any less wasteful than if they were spanking the money at 'eating peanut butter...

I know in marketing there is the need to get people to relate eg if giving a figure giving something ballpark to give a sense of what that magnitude means. I hate to say it but women feeling awful or collapsing is just a bigotry people are happy to write off and not try to imagine could happen...

is the cliffhanger approach normal for the abstract to what tantalise the reader into what happened next. It only seems to be something I see with FND papers so I guess that defines them as 'the next level in storytelling-focused 'researchers' vs the CFS stuff. Pay to read more and find out if...

Indeed it could begin with simple surveys that give pwme a list of different question types (leading, worded with 'not' the wrong way, using scales that are hard to understand what they are getting at) and a list of different circumstances/conditions e.g. when completely rested, have done a...

And yes, I do believe it should be straightforward to do studies showing exactly how responses can be influenced/changed by use of certain techniques for pwme. I've long thought that the CBT-related ones, and their various measures - before we even add in the conditions like people being...