Lightning Process study in Norway - Given Ethics Approval February 2022

Still not able to catch up with this and related threads, so again apologies for just jumping in.

Perhaps an open letter signed (only) by psychologists and psychiatrists could help debunk the argument that all criticism that a certain branch of psychologically informed research on ME receives is based on an adverse stance on psychology or psychiatry per se?

I think psychologists and psychiatrists who share our criticism and those who have contributed their own critiques would not have to write something substantially new. A commented list of their peer reviewed publications might be a nice thing, and maybe in addition some references to Brian Hughes' blog articles?

Even though I remember only one psychiatrist I think there are quite a few psychologists among the signatories of @dave30th's open letters.

What do you think @dave30th @Carolyn Wilshire @Joan Crawford @Woolie?

 

- Many patients have experienced the opposite of members of RN. So what? Blame those patients for not doing it right. Uuh?

- Managing stress... Is that really ME?

- As always, the patient organization is the great enemy? To require proper science, proper methods and ethical standards are to much to ask.

- Theres been decades of this type of research and so poor results. And that comes at the expense of other type of much needed research.

- No need at all to pay attention to negative experiences of LP, experiences that can have dramatic effect to patients already in an often devastating condition.

The last part is interesting, and seems like they they now have a lot of focus trying to say that LP not is about suppressing symptoms. That’s a blatant lie. Maybe you can’t find it in written material these days, but that’s what they teach. STOP! Move on, suppress symptoms, nothing to bother. After all, you’re “doing ME”. It is not real, just the brain suddenly programmed the wrong way.

 

Hi, I'm putting a letter together FAO the Editor. Happy for other psychologists/professionals to sign if they are happy.
Joan

 

So they support giving funding for Live Landmark (someone who has been selling expensive LP courses as effective treatments for a decade) to research LP in a poorly designed trial because there's an absence of evidence to support what she's been making money from, and there is reason to be critical of anyone who has strong opinion in advance. I'm not sure that is a good way for Camilla Stoltenberg and Per Magnus to get their important answers.

 

I have sent this letter via email today co-signed by a colleague:

4th June 2020
FAO Editor Alexandra Beverfjord
Dagbladet,
Box 1184,
City Centre,
0107
Oslo
Norway

Dear Alexandra,
We write in response to your debate article “ME-sick Constant spread of fear” published in Dagbladet.

“ME-organisasjoner internasjonalt og i Norge er ensidig negative til forskning på alt som forbindes med noe «psykologisk».”

Translation: “ME organizations internationally and in Norway are unilaterally negative to research on everything associated with something "psychological."”

This statement from Recovery Norway is wholly untrue and misrepresents the feelings and wishes of patients with the neurological disorder ME. In our experience as psychologists, working for more than a decade with hundreds of patients with ME, is that they wish to be well and symptom free. To be able to live their lives unhindered by debility and pain.

People with ME’s symptom burden and debility are intense and overwhelming making day to day functioning and everyday tasks almost impossible. They are some of the most debilitated and disabled patients any doctor will meet in clinical practice. It is our experience that patients are open to working on their emotional difficulties when this is in the context of understanding their condition from a biological, psychological (including neuropsychological) and social perspective. When the biological effects are minimised or ignored it is understandable that they become disenfranchised and upset. Patients’ distress is often due to and compounded by other people’s disbelief and the distress of being psychologised and rejected by medical colleagues. The later have little to offer this patient group beyond simple, symptom management. Many of which are poorly tolerated by people with ME. Together the physical and social difficulties patients face can lead to intensely distressing social and physical withdrawal and stigma. Patients are often physically isolated due to high levels of debility causing intense social strain due to lack of human comfort and support. They can experience distress if others around them believe that they are exaggerating their symptoms or that they could overcome their condition if only they would try harder.

The general intolerance across society of chronicity, ambiguity, and an inability to tolerate witnessing ongoing suffering is felt keenly by patients. When this is compounded by people in high status such as medical professionals: the uncertainty and ambiguity can lead to a tendency for the victim, in this case the person with ME, to be blamed for their predicament. Therefore, patients can feel intense pressure from those around them and from within themselves to engage in psychosocial treatments that have low/no face validity. The ethics of this need examining openly – is it acceptable that such a ‘treatment’ as the Lightening Process (LP) can meet even the minimum ethical requirements?
The difficult medical and social process these patients experience detracts from the failure of the medical and research communities to study this complex condition. The last three decades have seen many small and larger scale psychosocially focused studies proposing to ‘cure’ patients with ME using psychosocial / behavioural means: Cognitive Behavioural Therapy - CBT (to encourage increased activity) and Graded Exercise Therapy - GET (to increase physical stamina and activity by overcoming deconditioning). This tranche of work has failed to demonstrate that the underlying hypothesis (deconditioning and fear avoidance) can be overcome. No objectively measured cures are to be found. The failure to demonstrate objective evidence of recovery and the over reliance on subjective outcome measures in non-blinded trials renders the small benefits, if any are found, of these trials to be meaningless.

What psychosocially focused researchers seemingly fail to grasp is that patients with ME have spent years, sometimes decades, persisting through their pain, debility, flu-like malaise and disability and enduring on in the hope that they would come out the other side of it well and fit. If the fear avoidance/deconditioning theory were true – patients would have been well years ago! This does not happen. The more patients engage in physical and mental tasks, the sicker they become. This is the hallmark of their condition. There is objective evidence of exercise intolerance; neuropsychological difficulties (unrelated to low mood), immune dysfunction; that symptoms often, but not always, follow an infectious disease. Patients experience a wide range of debilitating symptoms including post exertional malaise (PEM) which is not noted or part of other medical or psychiatric conditions.

Regarding specifically the Lightning Process (LP): this poorly defined and vague intervention is not without risks. Joan has worked with patients who have been hospitalised with internal bleeding after being encouraged by LP practitioners to continue to ignore symptoms and increase activity. There are numerous reports and evidence of harms from increasing activity in people with ME. There is little or no explanation as to why the opaque LP intervention might work; an absence of testable theory ensuring that this can be shown to be false by observation or physical experiment. Instead the LP researchers are focused on verification – a failure to understand the scientific process. The LP lacks scientific credibility; is untestable; fails to define clear boundaries and limitations (it is effective apparently for all patients with ME although there is recognition that subgroups of patients exist). The LP is in line with speculation and conjecture. For example, the LP relies heavily on anecdotal evidence and personal experience and fails to incorporate the biological changes found in patients. LP supporters reverse the burden of proof to the critic/patient. Science places the burden of proof on those making a claim, not on the critic. The personalisation and questioning of the motives, character, morality, or competence of anyone who questions the LP are telling.
Patients with ME overwhelming want medical professionals to understand their disease and to help them to cope until effective, disease modifying, and curative treatments are available. In the meantime, patients who are highly distressed should be able to access appropriate psychological support that understands their condition, limitations, and difficulties. At best this can help patients to cope, reduce distress and to live well despite their ongoing high burden of symptoms.

Yours sincerely,

Joan Crawford
Chartered Counselling Psychologist
Co-signed by
Dr Dionne Joseph
Chartered Clinical Psychologist

==
I will ask other psychologist colleagues to co-sign when they are free from clinics today.

If other ME organisations / individuals write too that'll be helpful

Warm regards
Joan
Counselling Psychologist

 

Hi,
I've written and sent in a letter to Dagbladet.
Joan

 

Dear Joan Crawford and Dionne Joseph. Thank you SO much for this. It means the world when also professionals are speaking up to show that this is not a conflict between ME patients and health care workers.

Your letter was splendid and is much appreciated!

 

A sentence about @dave30th has now been added to the article (my bold).

NAFKAM-direktør Jong forteller til Dagbladet at grunnlaget deres for ikke å ta hensyn til LP-studien fra 2018, er at studien har vært kritisert av et tjuetalls forskere. Som bevis for dette, viser hun til et innlegg på den amerikanske journalisten David Tullers ME-blogg. Tuller er ifølge California University, Berkelys nettsider en «senior fellow» innenfor fagområdene folkehelse og journalistikk ved UC Berkely´s Center for Global Public Health.

Translation: NAFKAM director Jong says to Dagbladet that their reason for not taking the 2018 LP study into consideration, is that the study has been criticised by about 20 researchers. As proof of this, she refers to a text on the American journalist's David Tullers ME blog. Tuller is, according to California University, Berkely's website a "senior fellow" within the professional subjects public health and journalism at UC Berkely's Center for Global Public Health.

 

Recovery Norge has a direct financial and reputational conflict of interest here. I understand this is a tabloid but running this is basically free advertisement for a commercial product that is organized in the form of a pyramid scheme. Recovery Norge has no other stakes involved here, they are not a patient organization and do not have anyone in their ranks with basic understanding of ME, let alone expertise.

And of course they completely misrepresent what is happening so this basically qualifies as false advertisement.

And, uh, countermeasures? Constant spread of fear? GTFOH with this ridiculous nonsense. This is reaching Soviet politburo levels of making stuff up. Are they going to pretend to have counter-terrorism experts monitoring for dirty nuclear bombs? Good grief this is completely unhinged. I guess this is preparing to do the same as one study, I think it was Knoop, that had null results and blamed it on this imaginary nocebo from a negative cultural environment. Complete nonsense.

Also it's really worth pointing out again whoever did the calculation of something like 5K-7K having tried LP in Norway only for Recovery Norge to have something like 20 former participants vouching for it. What a complete load of crap over nothing. It's amazing that they note there is international widespread opposition to what is clearly junk pseudoscience and in response they reinforce their positions further and make vague claims about an international superconspiracy. They want thousands of objections to count as less than a handful of clearly misleading testimonies and actually the two famous cases of "recovery" that have now relapsed, McLutcheon or something like that? Those really need to be revisited given all of this.

Again it's not even that people are spewing this garbage that is a concern, it's that it is actually treated with seriousness and actually published with the intent of being a serious discussion. These people are completely out of their damn minds. Zero perspective that there are millions of lives effectively destroyed by exactly this process playing out of making honest research impossible.

 

That's the actual suggestion they are making and frankly this is on the same level as 5G is giving people COVID.

 

@Joan Crawford thank you this is a great letter!

 

That's a weird framing. Tuller is not a "senior fellow" because Berkeley's website says it, he is a senior fellow because the Berkeley faculty decided so. Nitpicky but still, what is with the weird framing?

 

I'll take splendid any day
Take care
Joan x

 

You're welcome

 

@Brian Hughes

also Coyne wrote a series of blogs
https://www.coyneoftherealm.com/201...been-conducted-with-chronically-ill-children/
https://www.coyneoftherealm.com/201...leys-disrupting-your-view-of-me-presentation/
https://www.coyneoftherealm.com/201...nal-providers-in-esther-crawleys-smile-trial/

 

What would a Berkley website know about that?

 

Also it's not cheap to become an LP practitioner:
https://www.philparker.org/training-courses/training-to-be-a-lp-practitioner/

so they have already made quite a financial investment.

Also, I can't find it right now but I read it on an LP practitioners personal site, that in order to retain their 'advanced practioner' status they have specific targets for number of patients they 'do' in year.
(I think this info is on one of the other threads about LP).

 

Hi there,

Can you link me to @Brian Hughes blogs?

Thanks
Joan