CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

Not fully read all the manual yet, but there did not seem to be any mention at all of PEM, and given the new NICE guidelines would well on in the pipeline or even already published before this was released it seems somewhat pointed that the title refers to CFS and not ME/CFS.

It continues to focus solely on fatigue either directly, or indirectly through activity management and sleep hygiene.

My first thought was this was written, by someone or by a group that were keen to produce something intended to be compatible with the new NICE guidelines but who do not actually understand at all the reality of ME.

It struck me that it had studiously left unsaid things about structured increasing activity levels and using CBT as curative, but that this was still a big chunk of the implied underlying assumptions. If the author(s) had been instructed to write a new manual allowing them to continue exactly what they were doing pre new guidelines, whilst making it seem they had taken the new guidelines on board, this is what you would expect as a result.

As ever it is falsely claimed that their approach is evidence based, even though the NICE evidence review was fully available in 2020, with this text being published in 2021.

Though one would not expect better from the Bath specialist service, it is deeply worrying that a regional service regarded by some as a nationally significant centre of excellence should be producing such a retrogressive manual in the same year that the new NICE guidelines were published, whilst demonstrating no understanding of the import of those new guidelines.

 

I skimmed it a few days ago so hopefully remembered this correctly.

It talks about increasing the baseline, and setting goals like "go to the sleepover", and all I could think of was how disappointed children are when they end up not able to go to friends parties, and how they might internalise that guilt if they get to the date and can't manage it, and how much mental emotional energy they might spend debating it in their heads. It felt quite sad to read, but maybe I'm being too pessimistic re improvement rates in children.

 

The " leading paediatric clinic" and still not a clue.
It has always been idiopathic chronic fatigue not ME/CFS. PEM had a fleeting mention recently but mainly as increased fatigue
It's groundhog day ...

It will be interesting to see how mechanisms for harm recording impact this service.

Note that the proformas from.Bath re activity management, diary planning etc are used by paediatricians nationwide - so this will have a potentially big impact .

 

It states on page 10 [bolding mine]:

So they have avoided saying it is deconditioning and fear of activity that 'perpetuates' CFS/ME [their ordering] but instead stated it is behavioural and cognitive factors that perpetuate the condition! So no change in actual understanding of ME, just a change in words and more gaslighting!

Edit: This is as far as I have got, I can't take any more tonight.

 

Things that relate to events and lead to stuff, basically. It's more airy than atmospheric science. It's so damn generic I don't understand how anyone takes this crap seriously, it reminds me of every MLM sales pitch out there.

 

might have missed this elsewhere in thread but for bigger things like this re history is it worth sending to MEpedia? That was where I found the original PACE manual - and given the tendency to suddenly claim ‘we never did fixed increments’ ‘it must have been renegade therapists as we never suggested being so rigid’ type things, it’s good to have the bigger manuals perhaps logged there too as documents of history

 

Can attachments like this be stored on MEpedia?

 

Deeply worrying , but not a coincidence. I noticed that certain things for CCG have ‘date of next update’ added to them etc, or one might assume if something many years old it is more vulnerable to being called out if date and one demanded.

Reading through that PEM isn’t mentioned makes me wonder even more what this place is about - being aware it seems to be becoming a situation of the one national centre that all kids with fatigue are to be sent starts making me in my head ask questions about what bigger concepts are going on here.

 

They must have found some protocol because when the 2021 paper which had Chalder on it came out it referenced and linked to the PACE manual via an rhul link. It was missing page when I clicked on it at around Sept 2021.

a Google found MEpedia had a page on it to my relief (I think they were already doing the ‘we’ve been misunderstood and it was only ever’ brand change to rehab from graded exercise) as I thought we were going to gaslighted about our recent past before the guideline had even been published if this wasn’t somewhere organised and public

 

http://ohs.oxon.sch.uk/wp-content/uploads/2019/12/Keynote-2-Jennifer-Starbuck.pdf
'NICE' one Jennifer...
Thank you for listeningWith thanks to Professor Esther Crawley and Dr Maria LoadesBath Specialist Paediatric Chronic Fatigue ServiceWebsite -www.ruh.nhs.uk/cfsTelephone -01225 821 340Email -Ruh-tr.paedscfsme@nhs.net

 

Is that a link to click on - I think it might be an internal link from the computer rather than the external version if so?

 

http://ohs.oxon.sch.uk/wp-content/uploads/2019/12/Keynote-2-Jennifer-Starbuck.pdf

 

Hmm - all seems very caring, unless you are aware of the 'increase' issue ie the stuff around the 'bone' all sounds like they listen. Then there is the silly graphs that seem to be rather the wrong shape and are what will stick in the brain as 'the gist/crux'