Paediatric patients with [ME/CFS] value understanding and help to move on with their lives, 2019, Katherine Rowe

Open access, https://onlinelibrary.wiley.com/doi/full/10.1111/apa.15054

 

The TL;DR appears to be: supporting sick people with competent professional health services is beneficial to their outcomes. * If early. * If competent. * In children

And you don't need to do a lot to make a difference. Just don't be a jerk for a start. And don't gaslight. Then pay attention and build from reality, not aspirations. Which says a lot about the BPS model, when literally any meaningful help would make a difference and it is still rejected as useless. The bar is as low as it gets and it still misses it. Like starving people rejecting your "food", because it isn't actual food.

Which is as expected. If this experience were the norm outcomes would be massively improved, this is pretty self-evidence. Unfortunately this experience is the rare exception and there is immense resistance to changing that, the very idea is rejected as a pointless waste of time.

Not sure what that tells us. Competent physician education based on the actual illness itself is what advocates have been begging for decades, along with research that will build a reliable knowledge base. So how do we get that to happen?

 

It has been cited already:
https://onlinelibrary.wiley.com/doi/10.1111/apa.15084

 

Thread here, https://www.s4me.info/threads/acta-...young-time-to-repent-by-ola-d-saugstad.12910/

 

Opinion piece based on the study that is the topic of this thread. Also mentions the editorial reference above.

Paywall, https://adc.bmj.com/content/105/5/451.full
Sci hub, https://sci-hub.tw/10.1136/archdischild-2020-319237

 

Who is the author @Andy ? I couldn’t tell from the piece.

 

Someone who goes by the name "Archivist". I know no more than that.

 

Thanks @Andy

 

edit: commenting on the 'Archivist' piece in what had been another thread.

There was no control group, so how much evidence was there that these children were helped to get control back over their lives?

Yuck.

Wonder who this archivist is?

Given the way this journal promoted the Lightning Process and downplayed the problems with SMILE it's interesting that they try to create the impression of being concerned by the way patients are treated. Sometimes those who like to talk about 'empathy' do so in a way that helps disempowers patients by assuming that they can so empathise with the way patients want to be manipulated and managed by authority figures to help deal with what is a very real illness.

 

(Not a recommendation.) Swedish BPS blogger Jörgen Malmquist recently blogged about the study, and added some extra comments yesterday:

https://web.archive.org/web/2021042.../04/19/me-cfs-unga-personer-som-tillfrisknar/

I think maybe someone has expressed doubts about his knowledge about ME, because he tweeted this the other day:

Sten Helmfrid has commented on Twitter:

 

Let's check his whining more closely.

When BPS believers talk about recovery there are a few things to consider. Recovery usually means back to health from before illness but that definition is unlikely to be the one meant. I'm sure there are others who can elaborate better than I can on that. So even if we presume full recovery is meant how can HE know it is so if there is no follow-up -- and there never is long-term. I think here statistically the term is regressing to the mean?

How about people who dropped out? Are they followed up as to why they left? We've seen papers with small co-horts and rather relatively large drop out rates. No curiousity as to why because they don't want to know.

And as we all know it's not just a matter of 'do some recover' but also were some harmed? And we know from endlessly checking and asking that the cabal do not believe in harms therefore they do not exist and do not need to be noted.

But the cabal of believers like to keep it simple.

So all of the negative commentary is bad, so bad and mean. Can't we understand --- SOME RECOVER!!!!.

Well maybe, but we can't know for sure if you don't look too carefully (lax recovery definitions, drop outs, noting harm) or expect some kind of commitment to truly finding out (long-term follow-up [as in truly long term]).

But at the end of the day I expect we are talking right past each other since we don't know that any particular BPS person is even referring to people with ME. All they ever see is fatigue.

 

50 % recovered- is this a new estimate ?
Not the rule of thirds
Not the paediatric 80 %

Goalposts moving again ?

 

Essentially this is a natural history experiment.