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That's a pretty fundamental gap that you've flagged, and it also explains a lot. Including the unhelpful confusion of what PEM is - because the work hasn't been done on finding out what we all mean by it. Indeed it probably varies not only by severity but also what you've done/has caused it, so...

Nope it is 'service management' and should be if outsourced being done by service marketers or managers who are pros in good customer-oriented service. Along with experts in the right medical specialisms/allied areas. I'm cynical enough to think bunging it under a pseudo-psych term, and the...

The important bit is that it is 'someone else's job'. Just like they term as 'mental health'/see it as 'a separate department' rather than realising that really if they accurately knew what that term was at all then they'd change how they acted to not harm people e.g. look into length of time...

It is an interesting topic. A more interesting one is to think of any industries/sectors where regulators and/or oversight does manage to do a good job, and what is particular about what makes these things work because I suspect the process and other bits is more/as important as the 'policy'...

Agree on the specific substance being more relevant. My reaction to wine for example is weird and extreme (a few sips immediately drunk) vs other alcohol but variation across all have been apparent over the decades so the what specifically is in it also seems to be important

Spot on. Those pwme who can do anything see it as a privelege and do it because we'd all like to but we can't because our health is affected by it. So what is with the old school tone? I thought these presumptions about pwme might at least be vanquished in allies post Workwell and the new...

'unless really necessary' shouldn't they learn that in the hands of the current cultural environment you can't provide that ambiguity (and then combine it with the ambiguity of not having severity-specific advice) to those who will be around pwme, who will be the ones who can frustrate judgement...

Your last point is really pertinent to their whole area. How is it that people sign off allowing 'research' for something that is clearly not actually a treatment. That con needs to be finally cut off at the knees. Behavioural approaches and attitudes have very limited contexts of applicability...

Indeed and I think the pattern-seeking being WITHIN individuals is going to be vital given the latency + size/type of symptoms (and mapping patterns in those and longevity) needs to relate to the ‘relative magnitude’ of that activity (vs that persons’ norm) for that person. THEN compared to...

It's as funny as them believing that the patients who recover are those who never see a doctor or go to a hospital so that must be the cure and treatment isn't it. SO in effect the existence of medicine itself by that theory would be what causes illness. Yet they never fall into that trap, so...

I haven't been able to read the actual paper in full here but have read the comments. I do certainly agree with concerns about how things are going to be mapped time-wise as ME is indeed ripe and has suffered from those who see what they want to see. Any subject doing poor correlation-based...

Erm isn't this even confused in their own selling it to themselves when they diss functional medicine as 'very different and quackery' compared to those woh 'treat conversion disorder' noting that functional medicine works because even a placebo can help, when isn't erm the whole area of those...

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...