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

[Trish]

The lead author says she sat in on a 3 LP day course as an observer.

One thing that struck me in my quick read through of the article was how astonishingly accepting the lead author is of the validity, relevance, ethical acceptability and efficacy of both the methods used. Particularly also unquestioning acceptance of the assorted physiological and psychological hypothetical models on which LP this version of CBT are based/justified by their proponents. And there is no mention anywhere that I remember of possible harms.

On the basis of claims made by the proponents and their shoddy research, she confidently recommends more and larger clinical trials.

As others have said, this is not serious research, it's promotion.

 

[FMMM1]

I fail to understand how this is a paper.

they looked at two treatments and noted they were a bit different - that seems to be all it says. Surely the fact that two treatments are a bit different is there for anyone to note?

And where did CBT-F come from?

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.

 

[Diluted-biscuit]

I thought the lightning process was more NLP than CBT?

 

[Joan Crawford]

Treatment is suboptimal with a third of children not recovering after 6 months of SMC.

Evidence shows LP can improve patient outcomes, though this intervention is not widely known/understood.

distinct elements of LP were its focus on language style, neurophysiological rationale, affective/physiological change technique and mode of delivery.

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.

 

[Peter T]

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.]

 

[FMMM1]

"Funding
This research was funded by the Linbury Trust (Grant no: LIN2623). During data collection, EC was funded by a National institute for Health Research Senior Research Fellowship (SRF-2013-06-013). ML is funded by the National Institute for Health Research (Doctoral Research Fellowship, DRF-2016-09-021)."

How can they then say:
"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."

?



the Stakeholder group appears to be:


I don't see any patient or carer involvement?

One glaring omission is that children/participants are essentially trained to lie.

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.

 

[Nightsong]

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.

 

[rvallee]

Also as mentioned elsewhere in relation to the reproducibility of research, because of commercial secrecy it is impossible for any independent verification to ever take place. But over and above this, it means that any academic, doctor or clinician recommending LP has no objective information or independent witnesses accounts on what is actually involved. Surely to recommend something that you can not adequately know about is professional misconduct?

Also how can anyone adequately address or analyse this paper if there are huge gaps in what we are allowed to know about one of the interventions discussed.

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

 

[Barry]

A review of the NICE guidance is currently underway (revised guidelines are due to be published in late 2021) [9]. There is a clear need to improve treatments for paediatric CFS/ME.

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

 

[Jonathan Edwards]

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.

 

[Peter T]

Is August 2021 ‘late 2021’?

 

[dave30th]

One thing that struck me in my quick read through of the article was how astonishingly accepting the lead author is of the validity, relevance, ethical acceptability and efficacy of both the methods used. Particularly also unquestioning acceptance of the assorted physiological and psychological hypothetical models on which LP this version of CBT are based/justified by their proponents.

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.

 

[Barry]

And where did CBT-F come from?

 

[Barry]

Is August 2021 ‘late 2021’?

Nope. Maybe they are angling for another delay

 

[Barry]

I don't understand why Fred Friedberg, who is the editor of Fatigue, would let this go through.

As they say - BS baffles brains.

 

[rvallee]

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

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.

 

[Barry]

Contrastingly, LP maintains entirely neurophysiological and biological explanations, conceptualising CFS/ME maintenance as sustained arousal of the autonomic system (or heightened physical stress response), described as the ‘Physical Emergency Response’ (PER) [24]. The rationale centres on neurological rewiring to enable enhanced physiology and reduce the PER. Socialising to the model includes taught explanations (using illustrative examples, metaphors and anecdotes) of brain–body connections and neuroplasticity (e.g. placebo effects) which establish concepts of the brain’s power and adaptability, and expectations for achieving rapid change via brain training.

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

 

[Barry]

Conclusion
We have helped define LP in the context of NHS treatment for paediatric CFS/ME, highlighting key similarities and differences between approaches. Particular parallels were found between LP and CBT-F approaches, though we have presented key differences in rationale, content and delivery that indicate that LP brings new avenues to explore with an aim of enhancing patient care.

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

 

[DokaGirl]

I've mentioned this in another thread but LP therapists are not members of any professional organisation that has a charter to oversee the quality of treatment offered by & the conduct of their members. Most UK healthcare professionals are members of such bodies and have to be to practice.

In addition, where children are concerned, other safeguards are usually required. If you are a teaching assistant, want to help coach kids in sports, be a lollipop person then you need to at least undergo basic relevant police checks.

So, if the LP practitioner is not a member of a professional body and hasn't had the appropriate clearance during the police checks then they shouldn't even be let into the same room as children.

That's before we start on the being sworn to secrecy and teaching children to lie to themselves, their parents & teachers.

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.

 

[dave30th]

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

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.