Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?, 2019, Segal et al

They take the LP study seriously and the authors are from UCL and Great Ormond Street Hospital - this was enough for me to post in Psychosocial Research sub-forum rather than Biomedical.

Paywall, https://journals.lww.com/co-pediatr...ild_and_adolescent_chronic_fatigue.98862.aspx
Not available via Sci Hub at time of post.

 

Thanks @Andy. What is the history of CFS/ME and GOSH?

 

Can't offer specifics but I can remember seeing several accounts of them having a strong psychosocial approach to ME.

 

So in looking to answer my own question, I found this:
https://www.gosh.nhs.uk/file/583/download?token=G6vKoGMO

I also note the use of CFS/ME.

I’m quite surprised - I thought GOSH was meant to be one of the world’s leading children’s hospitals.

 

The history of GOSH and ME seems quite complex. Dillon's reporting of the epidemic there seemed very sensible, but he did later collaborate on a paper with Lask in about 1990 which gave pause for thought. I shall see if I can find it.

 

This is the Lask, Dillon paper which recommends not burdening patients with a diagnosis of ME.

https://adc.bmj.com/content/archdischild/65/11/1198.full.pdf

 

Thanks @chrisb. It’s pure BPS. Funny the same ideas are persisting there 30 years later, given it’s a teaching hospital and you would think they are leading research.

 

I cannot get this on my college access yet. Does anyone know how to get the paper?

It looks disappointing.

 

We did have a member with direct experience - not positive. She was also deemed to have a COI for NICE Guidelines ( potentially due to stated views on CBT/GET)
Sorry can' t remember her name

 

That supposes you consider the underlying condition to be real

 

That is what makes this more concerning.
Overall reputation of the institution bestows a confidence that may not be merited

 

Is it worth tweeting to Coyne with smile data ? He has quite a few followers.
@JenB - this is kids!
Dr Geraghty had been prolific recently too - I don't know if he can comment too?
A critique is needed of both
If these are the quality for an evidence base for NICE then not much positive change is likely

 

I really had hoped that people with some sense of commitment to science would have been appalled by LP and from there, perhaps, understood that its 'success' is the reductio ad absurdum for the whole BPS approach. I wonder if they've actually bothered to read what it is.

 

Trish, I don't see LP mentioned in the GOSH brochure. did I miss something?

 

Is it significant that the abstract makes no mention of GET or CBT being effective? Maybe there are no trials for children to show this. It would be weird if the evidence in children was considered to favour Lightning Process but not CBT or GET just because someone has done one trial.

 

I think this must just be a reference to there having been a trial. I can imagine that there would be a certain amount of resistance at GOS/UCL to starting up Lightning Process.

 

There are a couple of CBT-trials (such as the Dutch FITNET trial), but no trials on GET for adolescnets with CFS as far as I know.