Paediatric chronic fatigue syndrome: 25 year perspective, 2020, Loades, Crawley, Chalder et al

Paywall, https://journals.sagepub.com/doi/10.1177/1359104520978461
Sci hub, https://sci-hub.se/10.1177/1359104520978461

 

Just read the abstract as I can not face reading the article but several things jumped out:
- is there any progress in testing treatment approaches, given the majority of patients would suggest the approaches currently provided by specialist services are worse than no intervention at all?
- are there any genuinely randomised controlled trials?
- still there is emphasis on the non uniquely diagnostic of feature fatigue, but failure to mention the one diagnostic feature likely to be uniquely identifying, PEM.

 

That reminded me...

 

Violins on the Titanic springs to mind.

 

Reminds me of that balloon debate 'game'
"In a balloon debate, speakers must argue their case for not being thrown out of a hot-air balloon. "

 

From the quote in the first post :

I do remember reading that doctors and surgeons didn't believe that babies and small children could feel pain, so they operated on them without anaesthetic and often refused to provide pain relief after surgeries :

https://www.nytimes.com/1987/12/17/...hout-anesthesia-went-unchallenged-832387.html

I also remember being told by doctors and my parents that children couldn't be depressed.

 

What a work of fiction! Why not just start with "Once upon a time......"

 

They do not mention that 35 years ago research was being done into the biological basis of ME.

 

Loades, Chalder, Crawley...A trifecta! I haven't heard of the last author.

 

Laughably and demonstrably false. The only small bits of progress were done by others or the patient community fighting these self-serving jerks.

Failures. These people are failures.

 

A young clinical psychologist at UCL, which generally matches Bath for level of appalling tretment of youngsters with ME and their families.
This training day was held in Nov 2018 and features her.
https://madeinheene.hee.nhs.uk/Portals/16/school of paediatrics/CFS course timetable november 2018 final PDF.pdf

Witnessing outsider witnessing: "A reciprocal witnessing workshop with young people reclaiming their lives back from pain and fatigue" Professor Deborah Christie, Professor of Paediatric and Adolescent Psychology Dr Halina Flannery, Clinical Psychologist

Have no idea what the title of the above workshop means.

Dr Lee Hudson has since moved away from this team, which is a shame as it seems as though one was one of the more reasonable climicians.
He and others had been told to no longer provide letters re benefits/disability for patients.
Presumably this was because they were going to get better.

 

I'm trying really hard to remain professional but seriously.........

 

Crawley's SMILE and Wyller's Music Therapy trials were such great advancements. So long as you ignore their prespecified primary outcomes.

Academia is such a joke.

 

Circle and something that rhymes with Merck springs to mind

 

'double, double, toil and trouble, fire burn and cauldron bubble'

 

If you are reading this thread because you have a child with ME/CFS, or you think your child might have something that could be it, please read this instead: https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

 

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Trial By Error: Professors Chalder and Crawley Join Forces to Push CBT for Kids

https://www.virology.ws/2020/12/16/...and-crawley-join-forces-to-push-cbt-for-kids/

 

Trial By Error/ David Tuller on the Lightning Process study paper that the article refers to as providing evidence for “promising” interventions with CBT elements:

It maybe is difficult for the editors of the Archives of Disease in Childhood -- a BMJ journal--, to reject or withdraw a paper authored by someone who is on the editorial board of another BMJ pediatric journal, the BMJ Paediatrics Open.

https://bmjpaedsopen.bmj.com/pages/editorial-board/

Also, perhaps someone needs to count Esther Crawley's papers published in the Archives of Disease in Childhood. It seems to me she has been one of their most busiest authors for quite a while.