Search results

'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...

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...