By David Tuller, DrPH
A Final Round in Norway
Lightning Process supporters got some bad news recently when a Norwegian national research ethics panel rejected a proposed study because it was poorly designed and fraught with conflicts of interest, as I wrote about here. But that wasn’t the end of the drama.
Although the ethics panel’s decision was meant to be final and not subject to appeal, the study team appealed anyway, sending a long letter to the ethics panel defending the trial’s methodology and disputing the charges of conflicts of interest. The ethics panel agreed to take up the issue one more time. After another review, the panel reinforced its initial action by firmly rejecting the proposed study a second time. The ethics panel has made clear that it is not categorically against research into the Lightning Process—just this inadequate effort.
The decision triggered predictable complaints from the usual quarters about ME patients. I often find it’s best for me not to respond to everything stupid someone says or writes—especially when others already have. Last week, the Norwegian publication Khrono, which covers higher education and has followed the issue of the proposed LP trial, published a scathing comment from Sigmund Olafsen, a scientist who has a family member with ME.
Under the headline “Worthless and unethical ME research,” here’s what Dr Olafsen wrote about the now-halted trial:
“The project appears to be a banal psychological experiment. Ask some people to fill out a questionnaire, spend three days telling them that it is their own responsibility if they do not feel better almost immediately after the three days, and ask them to fill out the questionnaire again a few weeks later.”
Nina Steinkopf has covered the back-and-forth on this issue at her invaluable blog, MELivet.
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Who is ‘Voices of Recovery’?
I’ve checked out the website of a group called Voices of Recovery, which carries the headline “Live a Life You Love.” This group has become an official stakeholder in the ongoing process of the UK’s National Institute for Health and Care Excellence (NICE) to create new clinical guidelines for ME/CFS. In November, NICE released a draft version that explicitly recommended against the LP, and invited comments from stakeholders. The agency is scheduled to release a final version next month.
According to the Voices of Recovery website, the organization was “founded in 2020 to represent the voices of those that have fully recovered from chronic illness, particularly Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) and fibromyalgia…We know these diagnoses are not a life sentence! We have over 50 members who have all fully recovered to prove otherwise.”
The site includes three such recovery stories—all from people who attribute their success to the Lightning Process. (The group called Recovery Norway, a supporter of the now-halted Norwegian trial, comes to mind.) But who is behind Voices of Recovery? That’s a mystery. The domain is registered to an entity called Artemis Coaching in Suffolk, England. I can’t find anything about an Artemis Coaching in Suffolk, England. (There seems to be an executive coach in the US who uses that name for her consulting firm.)
It’s not clear why Voices of Recovery has become a stakeholder at this point in the NICE process–it is too late to submit any comments for consideration. Presumably the group hopes that the NICE committee reverse its current advice against the LP. I am not aware of new data that would persuade the committee to revisit its scientific assessment of this matter.
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New Crawley-Parker Paper on LP and CBT
One of the arguments that LP proponents have made in its favor is that it is like CBT in some ways. This debating point arose during the debates in Norway over that now-defunct proposed trial. Professor Michael Sharpe, one of the three lead PACE investigators, has said the LP “has similarities to cognitive behaviour therapy.”
In some people’s minds, I guess, comparing the LP to CBT is meant as a sign of respect and validation for the former—the presumption being that CBT itself enjoys a positive reputation. Viewed from a sideways perspective, it looks more like the reverse–that these experts are essentially affirming that their version of CBT is a muddle of nonsense like the LP, with both interventions based on unproven mechanisms of action.
In any event, it has seemed for a while that the CBT and LP camps were merging into a mutual admiration and support society. That process seems to have reached a new level with a recent paper published in the journal Fatigue: Biomedicine, Health & Behavior. The paper is called “CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric Chronic Fatigue Syndrome.”
It is co-authored by, among others, Dr Phil Parker, the spiritual healer, osteopath and now psychologist who created the Lightning Process, and Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician. Professor Crawley was the lead investigator of a seriously flawed 2017 pediatric trial of the LP. It is not surprising that she and Dr Parker are now proposing further pediatric trials involving both CBT and the LP.
Fatigue is sponsored by the International Association of CFS/ME and has published a number of important papers—including the first formally peer-reviewed refutation of the PACE claims of recovery after the release of unpublished raw data from the trial.* [*Clarification–the PACE trial results were busted in an earlier peer-reviewed paper, in journal correspondence, and perhaps in other venues I’m not aware of. In the previous sentence, I have added a phrase to clarify that I was referring to the first paper to refute the recovery claims by analyzing the unpublished raw data.] (Last fall, Fatigue published a paper on which I was a co-author.) It is not clear why Fatigue decided to publish this bilge.
The new CBT-LP paper does not seem to have undergone a rigorous peer review. It refers, for example, to the “impressive” findings from Professor Crawley’s 2017 trial, which was published in Archives of Disease in Childhood, a BMJ journal. But the new paper fails to mention the trial’s methodological violations of core scientific principles. These missteps resulted in a 3,000-word correction and a 1,000-word editor’s note. (I instigated these developments by sending a formal letter of complaint to the journal.)
Moreover, the Fatigue paper appears to accept the LP’s physiological explanations at face value—not surprising, I guess, since Dr Parker is a co-author. Here’s a typical sentence: “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.’” The reference for this claim about the “entirely neurophysiological and biological explanations” of the LP is a previous paper also co-authored by Dr Parker. This earlier paper, “Understanding the Lightning Process approach to CFS/ME; a review of the disease process and the approach,“ was published in the Journal of Experiential Psychotherapy, which is sponsored by the Romanian Society of Experiential Psychotherapy. (It’s hard for me to remember the last time I saw key information in an academic paper being supported with a reference to this Romanian publication.)
Journals and peer reviewers have no obligation to rubber-stamp the unwarranted assertions of authors or allow them to cite themselves without challenge. Fatigue messed up here.
Comments
18 responses to “Some Lightning Process Updates”
Thank you, David
I hope that the NICE committee will ask the same questions about “Voices of Recovery” that you have asked. It is aggravating the lengths that the biopsychosocial brigade will go to.
I think it is vert important to highlight the basis for LP since they now try to make the impression about the similarities between LP and CBT.
In order to become a LP coach you first have to be Master Practitioner in NLP, Coaching & Clinical Hypnotherapy
https://www.philparker.org/training-courses/training-to-be-a-lp-practitioner/
Up to 2015 it was illegal to practice Hypnotherapy in Norway, which means that LP coaches in Norway from 2008 (when Live Landmark started) actually was breaking the law.
But after 2015 you need written consent by the client to use it, which is not a part of the questionary you have to fill out to go to a LP course.
This is a link to an ecxellent blog on the matter (only in Norwegian)
https://totoneimbehl.wordpress.com/2021/07/08/vitalt-a-ha-korrekt-forstaelse-og-kunnskap-om-phil-parker-lightning-process-lp/
I did a bit of detective work and came across a Facebook page for Artemis Coaching, which said “Nicola Pitt and Kirsten Goodwin (formerly known as Artemis Coaching) work together to offer Career Retreats, workshops, and events.” I did find a website for Artemiscoaching.co.uk but it wouldn’t open, but I did find the following. Kirsten Goodwin is based in Suffolk. I wonder if these two are behind an account that recently appeared on Twitter claiming to be ‘two people who recovered from CFS and chronic pain’.
“Executive coaching, leadership training and leadership development. Staff training. HR training. — – Nicola Pitt -” https://www.nicolapitt.co.uk/about-1
“The Tale of Kirsten Goodwin” https://www.kirstengoodwin.co.uk/post/the-tale-of-kirsten-goodwin
The ridiculous LP and useless CBT for ME are two-peas-in-a-pod similar. They are both quack treatments promoted by frauds. Promoting harmful treatments is a very serious tort [1], but it’s all good when it’s done in service to the establishment elite.
The IACFSME reminds me of the CMRC: they both seem like a good idea, but nothing much ever happens, and there are way too many psychologists/psychiatrists involved.
IACFSME has been around plenty long enough to establish a professional regulatory body like the American College of Surgeons, for example. Patients would certainly benefit from programs like the “ACS Quality Verification Program”:
“… a proven, standardized method for establishing, measuring, and improving your hospital’s quality infrastructure across all surgical departments.” [2]
One can easily imagine some of the essentials for ME patients, including quiet waiting areas where patients can lay down, physicians that don’t assume we are all seeking attention and drugs, etc.
Maybe medical people could even treat us like human beings and quit abusing us. Is that the Impossible Dream?
[1] from Wikipedia: ” It can include intentional infliction of emotional distress, negligence, financial losses, injuries, invasion of privacy, and many other things”
[2] https://www.facs.org/
Where’s the outcry from other paediatricians?
Looking at Figure 2 in this paper in “Fatigue: Biomedicine, Health and Behaviour” -https://www.tandfonline.com/doi/full/10.1080/21641846.2021.1935373 – I can’t believe there’s not an outcry from paediatricians over a proposal to subject sick children to these techniques. The approach looks to me like it’s founded on the belittling, shaming even, of children’s experience of suffering and is devoid of compassion, empathy and reality. Doctors’ own false illness beliefs shouldn’t be allowed to impact on any patients, let alone children.
Thank you David, for your sharp eye, brain and pen, and hunger for telling truth. Your work is so valuable! Thank you.
The autonomic nervous system is very “fashionable” nowadays, along come these charlatans trying to claim that all they are doing is calming the stress response. Not true. Part of the LP is agreeing to keep it secret, which is a safeguarding issue already raised by Prof Jonathan Edwards. Furthermore the LP blames non recovery on the child, causing psychological damage. For these reasons I find it unbelievable that NICE could allow any part of it, let’s hope they assert that any evidence for the LP is of poor quality.
The “CBT Fixes Everything!” madness has now thoroughly infected NIH:
“I was just notified that my NIH grant assessing the treatment targets of ReACT for pediatric functional seizures (FS) has been funded! We’re hoping to determine if targeting some of the novel factors recently found to be related to FND can be effective for decreasing FS symptoms.” [1]
“Retraining and Control Therapy (ReACT): Sense of control and catastrophic symptoms expectations as targets of a cognitive behavioral treatment for pediatric psychogenic non-epileptic seizures (PNES)” [1]
It’s bad enough to inflict this garbage on adults. How many children will blame themselves when the quack treatment does nothing? Will NIH be there to pick up the pieces?
[1] https://twitter.com/DrAaronFobian/status/1415072392980975623
Interesting about voices of recovery. To become an official stakeholder for nice guideline review an organisation must provide 1-2 contact names. I wonder if NICE would need to share them if requested?
It looks like the website was registered in December last year, so possibly in response to draft guideline?
Thanks again David for another excellent piece! Good work, as always.
In reply to “jimells”, who states: “The IACFSME reminds me of the CMRC: they both seem like a good idea, but nothing much ever happens, and there are way too many psychologists/psychiatrists involved.”
– I’m curious as to who these psychologists/psychiatrists involved with the CMRC are? Can you name them please?
Don’t forget : the CMRC was instrumental in securing £3.2m funding last year for the DecodeME project, which aims to use over 20k samples of pwME to drive the biggest genetic/ biomedically focussed research into the disease. I’d hardly say that means “nothing ever happens” ?
Phil Murray,
I am unable to name psychs who are currently CMRC. In fact, I am unable to name *any* current members of the CMRC, because I can not find anything recent regarding CMRC.
CMRC still doesn’t have its own website. Their one page on the Action for ME website is seriously out of date.
Here are psychs and “fellow travellers” who have been CMRC members:
Neil Harrison
Carmine Pariante
Esther Crawley
Gabrielle Murphy
Whatever happened to their “Grand Challenge”, announced in 2015? Is it the same project now known as “DecodeME”? If so, then it is fair to say they have organized one study in eight years. Meanwhile the psychobabblers are spitting out their awful papers faster than ever. A bit more urgency is needed.
Dear jimells ,
The CMRC’s work is done in their own time, and like many areas without funding, it will always be difficult to keep material on their developments up to date.
They have succeeded in putting on many international researcher conferences, of which I was delighted to receive our good ally David Tuller to two of the last three in Bristol.
I’m sure you’re aware of this information? “Purpose: To promote the discovery of the biological mechanisms that underpin CFS/ME, which, together with clinical observation, will drive the development of targeted new treatments for this highly underserved patient population.”
(taken from https://meassociation.org.uk/research/cfsme-research-collaborative/ )
I was in the patient advisory group to the CMRC, who were instrumental in gaining the £3.2m funding for DecodeME. I’d say, that if that was indeed their “Grand Challenge”, that they succeeded somewhat in their aims? (with – critically- patient help & input) (including, by the way, mine).
Perhaps you’d like to look at the DecodeME website? And maybe consider getting involved yourself? More than 2000 pwME already have .
https://www.decodeme.org.uk/
– the biggest ME study ever.
Phil.
It’s incredible that they are allowed near patients given that the research is bad. They just seem to hide in clinical settings without question and potentially causing harm.
Thanks for all the work you do.
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.Thank you again David for your hard work
This ‘recovery’ claim that they keep making really worries me.
My worry is concerning blood transfusions. M.E patients were banned from giving blood in 2010.
https://www.bbc.co.uk/news/health-11465723
So my question the the LP founder and supporters are, if they are claiming they are ‘recovered’ do they have it noted on their medical records that they are recovered and now allowed to give blood ?. If they are still banned from giving blood, why are they allowed to claim they are ‘recovered’? Do the ‘recovery’ groups cover the issues of blood transfusions.? and if Long Haul patients are being dx at a later stage that their long covid is now given a M.E dx ,are they too banned from giving blood ?
l may be mistaken but l haven’t read anywhere about the concerns surrounding the blood transfusions from long covid patients who now have M.E or the ‘recovered’ patients the LP founders or various website groups promoting LP. l’m very worried , this to me is so dangerous what they keep promoting as a medical program about being ‘recovered’
While reading about “medically unexplained symptoms”, I found this:
Mortality in Patients With Psychogenic Nonepileptic Seizures
Nightscales R, McCartney L, Auvrez C, et al. Neurology. 2020;95(6):e643-e652.
According to this paper, out of the patients who were diagnosed with PNES (I.e. not epilepsy) and went on to die of something, 23.6% died of … epilepsy (I.e. epilepsy was cause of death on the death certificate).
It seems likely that at least one of those diagnoses has to be wrong. (Discounting the possibility that they acquired epilepsy between diagnoses).
Possibly explanations might include:
A) Iatrogenic death. Patient has a seizure, doctor present thinks it’s epilepsy, treats it as such, and the patient dies as a side effect of treatment.
B) PNES seizures can be fatal in a more direct way.
C) The initial diagnosis was wrong, and those patients did have epilepsy after all.
I think if you’re doing an “intention to treat” analysis of a treatment, you include all the patients you assigned to the treatment, including the ones who were post mortem diagnosed as having some other condition.
(I expect there to be a similar effect with IBS patients who die of bowel cancer, but in the case of PNES I’ve find statistics on how often it happens).
I wonder if ‘adaptive pacing therapy’ is another name for Graded Exercise Therapy (GET)……
https://www.renfrewshire24.co.uk/2021/07/19/uws-project-part-of-20-million-funding-to-examine-long-covid/
It all aggravating the lengths that the biopsychosocial brigade will go to and this is bad….