CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric [CFS], 2021, Anderson et al

As you flagged up previously this is funded by National institute for Health Research Senior Research - "funded through NIHR, which is designed to do bad research for political convenience--" [https://www.s4me.info/threads/in-pr...-individuals-the-tlc-study.21210/#post-353743]

One of the problems with this is that it has an "official" stamp on it i.e. since it is funded by "NIHR"! I might ask my MP what can be done about that but they'll probably tell me that I can contact the public accounts committee [Westminster - UK Parliament] directly.

 

I thought the lightning process was more NLP than CBT?

 

This is not research. This is a biased sales pitch.

The boldness of the above claims are an absurdity. "treatment is suboptimal" we have no evidence of active "treatment" of anything. Only that children tend to have better outcomes - probably naturally in time.

Zero critical review and the inclusion of Phil P in this work is astonishing.

There is no objective evidence that LP can improve patient outcomes.

Haven't the Linbury Trust been very supportive of BPS researchers in the past and had been criticised for this?

Both BPS CBT and LP encourage duplicity and essentially hiding of the therapists underlying beliefs re causation. Nothing remotely good about that. Also effective at making patients feel bad if they don't recover. Shuts them up and stops them complaining or reporting harms. Nothing ethical about that.

I'm beyond staggered at the idea a professional would put their name to this. And that the journal would publish. Don't the editors have knowledge regarding the history here? Clearly not.

 

Is it worth considering what the Bristol/Bath group’s position on recovery following intervention in the Bath clinic?

I may be misremembering but hasn’t Prof Crawley previously claimed a 95% success rate in treating paediatric ME/CFS? But in this paper she says “around a third do not recover after six months”. I was not surprised at either figure given we do not know what the rate of spontaneous recovery in paediatric ME/CFS, the figures given are based on subjective outcome measures that may not correspond to real life and this group is known to have evolving ideas around what ‘recovery’ means.

This paper cites the NICE guidelines as recommending CBT and GET as an effective treatment for ME/CFS, claiming it is treatment as usual, however as pointed out above this is contradicted by the draft new NICE guidelines released last year that explicitly reject either as curative, warns against the use of GET and rejects the use of the Lightening Process with this patient group. I could not see a submission date for this article, but undoubtedly Prof Crawley and the Bath clinicians co authoring this paper will be aware of these changes, so unless this article was submitted before the release of the
NICE draft some seven or eight months ago, at best they are being disingenuous and at worst deliberately seeking to deceive. Note, I also can not imagine that Phil Parker is not aware of the fact that the draft NICE guidelines explicitly rejects the use of LP with this patient group.

I am puzzled that if the Bristol/Bath group are so committed to the efficacy of GET and CBT why are they putting resources into dealing with children who have not been successfully cured. As well as this revived interest in LP after Prof Crawley’s controversial Smile Trial undertaken in 2012/13, but not published until 2017 online (2018 in paper form), they have two other studies in the pipeline using as subjects patients from the Bath clinic who had not ‘recovered’ looking at newer variants of CBT, which have been previously discussed here at S4ME.

I wonder if Prof Crawley is aware that she has so far oversold the success of CBT/GET, despite her numerous previous papers claiming to prove this (via subjective outcomes and outcome switching and potential research misconduct), and is looking to pre-empt the new NICE guidelines by switching her focus. However this does not explain her interest in LP given as of next month it is likely to be explicitly rejected for her patient group by NICE. Is she seeking to create a literature undermining the new guidelines or justifying future divergence from them even though previously more than happy to cite them as justification for her clinical practices?

[added - Note it is perhaps not surprising that Prof Crawley is a personally attracted by the rationale of LP given in press interviews she repeatedly has said CBT and behavioural modification acts like a ‘pill’ to change/treat/cure brain physiology. Interestingly up till now she has not put this belief into her ‘scientific’ papers.]

 

Re "This report is independent research. The views expressed in this publication are those of the authors, not of the Linbury Trust, the NHS, the National Institute for Health Research or the Department of Health and Social Care."

As a body appointed to allocate public funding to research (i.e. NIHR) they are surely required to have an evaluation system in place to ensure that the research they fund has some public value/benefit. Not fund any old crap and then say the research has nothing to do with us.
Presumably this research has the usual flaws of being unblinded and using subjective outcome indicators --- so it can't even provide useful evidence of whether something works/doesn't work.

 

The Linbury Trust is one of the trusts established by Lord Sainsbury, and they've had an interest in funding ME research for a very long time. As far back as 1998 they produced a short booklet ("A Research Portfolio on Chronic Fatigue") which contained contributions from many of their grantees and a list of all the research projects they had funded up to 1998:



As can be seen, they've been funding research since 1991, and, although some of it is obviously of very poor quality, they have funded worthwhile biomedical research as well. I think it would be worthwhile approaching the trustees to explain both the ME patient community's extreme concerns regarding Parker and the LP & clarifying for them the real research priorities of the ME patient community.

 

Uh. Maybe that's this paper's purpose. Ridiculous but not by their usual standards.

 

Now there is a heavily loaded comment. None of the authors are involved in the NICE review at all are they?

 

Maybe it should have read:

A review of the NICE guidance is currently underway (revised guidelines are due to be published in late 2021) [9]. Both CBT-F and LP were judged to be unsuitable for use. There is a clear need to improve treatments for paediatric CFS/ME.

 

Is August 2021 ‘late 2021’?

 

This was astonishing to me as well. It just accepts the entire premise as if it's valid. And they hang everything on the "evidence" from Crawley's bogus study. I don't understand why Fred Friedberg, who is the editor of Fatigue, would let this go through.

 

Nope. Maybe they are angling for another delay

 

As they say - BS baffles brains.

 

Odd comment coming from people who would leave those guidelines as is, in fact are trying their hardest behind the scenes to keep them as is. In fact they literally did, until they had to backtrack. And the updated draft actually blames them, though in the most passive way possible.

But, again, nothing they say matters, they don't mean what they say or say what they mean because no one else cares.

 

Good job there's no shortage of good scientific evidence for that then.

 

They are striving to get the comments about LP removed from draft guideline when it becomes formalised. That's my bet.

 

Yes! And, what about having parents and guardians in attendance? Where is social services on this?

This "treatment" of children shouldn't be happening in the first place.

Canada had residential schools for first nations children for over 150 years. Not now, it ended in about the 1970s. Not saying the abuse with LP would get to the horrendous level that went on at the residential schools, but children are vulnerable. Just because someone has letters behind their name, talks convincingly, and seems respectable, doesn't mean children in their care will be safe.

 

Reference 24 in the bit quoted about the physiological explanation for LP is a citation of Phil Parker's paper in the Romanian Journal of Experiential Psychotherapy. Just saying.