RCPCH conference 2019 abstract: Characterisation of population... service provision... outcomes for young people with CFS in... inpatient.. Doukrou...

Do we have any idea what the natural recovery rates from post - viral EBV were in the 70s before medics became so focused on active rehab?
Grubb who treats POTS says that post viral POTS usually takes 2 to 5 years to resolve, which fits with the improvement seen in paediatrics.

 

Whilst we are about it, we should bear in mind that all these items, possibly of dubious worth, it is hard to tell, are published in the comic that has apparently refused to make a suitably conspicuous note of the concerns surrounding the LP paper, which may have led some of the authors involved in the current round of papers to conclude, in the recent review, that LP, in conjunction with medical care, might be effective.

It all looks a bit incestuous.

 

That would be interesting because most likely improvements were the natural course of something like mononucleosis, from which recovery time varies a lot, and not actually ME. No one involved in this type of research could differentiate a longer-than-usual natural bout of mononucleosis from genuine ME. They probably include several other unrelated health issues as well.

Really not a good idea for people to do research when they can't even properly identify the people they claim expertise in. I guess that's a controversial opinion but there, I said it. It's like geologists who can't tell the difference between fossilized wood and rock, there's really no point to anything they have to say on either topic.

 

Merged thread

https://bmjpaedsopen.bmj.com/content/3/Suppl_1/A34.abstract

 

So it's called "Characterisation of population, review of service provision, & outcomes for young people with CFS in a tertiary care inpatient setting", yet "All patients had multiple diagnoses which included CFS (85%),chronic pain (66%), functional gastrointestinal disorders (40%) and mental health disorders (55%)". Also "Our tertiary multidisciplinary service treats young people with chronic fatigue syndrome and other physical and psychological comorbidities.". Further proof that CFS is used as a catch-all diagnosis for the psychs.

 

UCH has been mentioned previously, I can't remember if it was they who had the awful treatment pathway poster, but I can remember mixed experiences on forums . @Tilly

 

This is a very peculiar sentence:

Following regular day care/inpatient admissions, we were able to demonstrate improvement in mobility and or education in >74% of our patients.

What is meant by 'we were able to demonstrate'. Presumably it means that we were able to identify recorded improvement in the case notes. But this does not in any meaningful sense 'follow' day care/inpatient admissions. It sounds as if somehow the improvement itself 'followed' the day care/ inpatient admissions. Maybe it did but any causal connection is unknown.

What this sentence really wants to mean I think is that 'we were able to demonstrate that our regular care/inpatient admissions less to improvement' but of course it would not be legitimate to do so.

I despair that such an anti-evidence based approach to care is being expressed by colleagues at UCH. The whole point of educational organisations such as Royal College of Paediatrics and Child Health should be to get people to see that this sort of approach is no good. Things need to be done properly.

I sense a response to the critique of trials of standardised therapist-delivered treatments such as PACE. The response is that although the evidence for these standardised approaches may be weak everything is OK because we provide tailored treatment which is different for each case and we know that works. This is going backwards from what was at least an attempt to gather meaningful data in the trials. It is exactly the argument the homeopaths have used to dodge testing with trials.

 

I think this is what we should begin to drive home way more. This line of thinking is elegant here because even the psychs should be able to either follow it on an intellectual level or demonstrate that they are violently defending an indefensible double-standard. At the same time, it is also accessible to a layperson.

 

According to the model they are not even sick so all this effort for unquantifiable subjective "improvements" is straight up pathetic.

Impressive to "demonstrate" quantified improvements without quantitative markers. In a population of "CFS" with various different issues. The "positive outcomes" seems to indicate the usual practice of only counting additions and ignoring subtractions. As is tradition. Just BPS things

3 years on this? Still concludes that it would be neat if someone could do the first step of being able to measure the things. This approach has been in official use for 20 years. Still in the most controlled circumstances the very best is: here's some "numbers", though it would be great if we could measure things, but we feel like we're helping.

How can it be service provision if everything is ad hoc and the first step of deciding how to measure outcomes isn't even accomplished? Is it a "research service" or something?

Again this is regulatory failure. This is not a serious process and serves no purpose whatsoever other than trying to identify problems that BPS "solutions" could find use for. The whole thing is an obvious dead-end of no value whatsoever but because so much sunk cost has been invested in it it's necessary to still grasp at any straws in the way and try to find uses for this very expensive nonsense.

This is in essence the very core of what IAPT promises, in the very best controlled circumstances, given resources that will never be available in practice. And still: it'd be nice if we could actually measure things but here are numbers you may like. Beyond the abstract, I don't think a full account of this experiment will be any more impressive.

 

Yes they did and they do not encourage patient participation. I would be doubtful if they would report harm of any degree from experiences of those that attend the best you can hope for is supportive letters?