Lightning Process study in Norway - Given Ethics Approval February 2022

[Jonathan Edwards]

I think they write this in response to patients not believing that thoughts have the awesome power to cause such a severe illness as ME/CFS often is.

I am not sure that is in fact their target. My understanding is that the target is the 'biomedical model' which they claim is held by narrow minded physicians who think that thoughts are not involved in bodily illness. But they fail to understand that these physicians are entirely happy that thoughts influence illness, as do social circumstances, but through biological mechanisms. The BPS stance derives from a power grab by 'liaison psychiatry' that wants a slice of the medical cake. The argument is that the BPS people have a wider perspective. The truth is that they haven't a clue about biology or metaphysics or philosophy of mind or just about anything. They belong to the naive followers of Descartes who took mind/body interaction to imply that mind is 'non-physical'. Descartes never made this claim. For him the mind, and God, were central to physics.

 

[dave30th]

The BPS stance derives from a power grab by 'liaison psychiatry' that wants a slice of the medical cake.

Jo, how entwined are the back stories of BPS and liaison psychiatry, do you know? In other words, are you forwarding a hypothesis or do you think it's an actual fact? I'd never heard of "liaison psychiatry" as a think until it came up in this context. It doesn't seem to play as much of a role in US health care as it seems to in UK.

 

[Sly Saint]

I'd never heard of "liaison psychiatry" as a think until it came up in this context. It doesn't seem to play as much of a role in US health care as it seems to in UK.

soon will

The Academy of Consultation-Liaison Psychiatry (ACLP) is an international organisation, based in the USA, which aims to improve the psychiatric care of people with medical illnesses.

Professor Michael Sharpe received the ACLP gavel from the previous President, Rebecca Weintraub Brendel of Harvard University, during the ACLP 2019 annual meeting in San Diego.

https://www.psych.ox.ac.uk/news/65t...he-academy-of-consultation-liaison-psychiatry

 

[Hoopoe]

Jo, how entwined are the back stories of BPS and liaison psychiatry, do you know? In other words, are you forwarding a hypothesis or do you think it's an actual fact? I'd never heard of "liaison psychiatry" as a think until it came up in this context. It doesn't seem to play as much of a role in US health care as it seems to in UK.

Some time ago I read a comment that claimed Sharpe(?) once admitted that MUS was a way to save liason psychiatry from irrelevance or something to that extent.

I'm sorry I cannot be more specific and am passing on unreliable hearsay. Maybe you can find out something about this.

 

[rvallee]

Jo, how entwined are the back stories of BPS and liaison psychiatry, do you know? In other words, are you forwarding a hypothesis or do you think it's an actual fact? I'd never heard of "liaison psychiatry" as a think until it came up in this context. It doesn't seem to play as much of a role in US health care as it seems to in UK.

Liaison psychiatry is just a recent re-branding of psychosomatics. Like BPS was just a re-branding of psychosocial. Same substance, just wearing a fake mustache. Same as FND is conversion disorder. Same as MUS is hysteria. And all those things are also the same thing as each other. It's entirely about optics and how to present the message, there is clear continuity all the way back to the early concepts of hysteria.

 

[MSEsperanza]

Jo, how entwined are the back stories of BPS and liaison psychiatry, do you know? In other words, are you forwarding a hypothesis or do you think it's an actual fact? I'd never heard of "liaison psychiatry" as a think until it came up in this context. It doesn't seem to play as much of a role in US health care as it seems to in UK.

Not an answer but maybe a hint:

The most prominent proponent of the psychosomatic view on ME/CFS in Belgium Boudewijn van Houdenhove wrote about the state of liaison psychiatry in the 1990s. He basically argued that patients suffering from unexplained chronic symptoms such as pain and fatigue offered an opportunity to emancipate themselves from their purely advisory role to form their own biopsychosocial therapeutic policy (Unfortunately the article is only available in Dutch: http://www.tijdschriftvoorpsychiatrie.nl/assets/articles/articles_649pdf.pdf)

Sharpe wrote about the same topic. In the early 1990s he said that "... the need for British liaison psychiatrists to justify their existence is just as acute. Thus on both sides of the Altantic clinicians are looking for research findings to support their case." [...] As well as those with mood disorders, general hospital patients with unexplained, disproportionate or functional somatic symptoms are of increasing interest to liaison psychiatrists. [...] Their identification and appropriate treatment may be one area where cost-effective interventions could be made." At one point he argues that the future of liaison psychiatry, will determine the survival of psychiatry as a medical discipline. Sharpe's promotor Richard Mayou played an important role in the liaison psychiatry and the direction it would take. Source: https://journals.lww.com/co-psychia...ychiatry_and_psychological_sequelae_of.5.aspx

So I think the origin of the psychosomatic view on ME/CFS and the fear-avoidance model, goes back to liaison psychiatrists who had to justify their existence and wanted to emancipate themselves from an advisory role at the end of the 1980s and early 1990s.

From this thread:
https://www.s4me.info/threads/micha...-published-responses.9729/page-16#post-241133 :

 

[Jonathan Edwards]

Jo, how entwined are the back stories of BPS and liaison psychiatry, do you know? In other words, are you forwarding a hypothesis or do you think it's an actual fact? I'd never heard of "liaison psychiatry" as a think until it came up in this context. It doesn't seem to play as much of a role in US health care as it seems to in UK.

One answer is certainly the fake mustache one.
But the history is almost certainly complex. BPS itself obviously goes through various phases from the original coining of the term to the current highlighting of MUS. Sharpe has a particular interest in liaison psychiatry as a political slogan and there may not be quite the same game being played in the US.

I guess any comment was rather specifically in relation to this Cartesian anti-pseudoCartesian claim. It is specifically about denying that 'medical' illnesses just belong to physicians. In the primary care setting this might be a way to persuade GPs to refer to psychiatry rather than internal medicine and that might be more relevant in the US. In the hospital setting it is about getting access to patients who would otherwise be under physicians. If you are at King's, which is associated with the Institute of Psychiatry then that is just psychiatry but if you are at Barts or Oxford then the liaison psychiatry route is more relevant, even if there is a separate inpatient psychiatric unit (the Warneford at least when I was there) as well.

Perhaps more generally what I mean by liaison psychiatry is psychiatrists who want to get in on the act with illnesses that might otherwise be seen by physicians. I think the technical term may have something to do with the way the NHS allocates resources to create' services' whereas in the US services are provided wherever the demand is enough to justify a business case.

 

[Peter]

This Saturday, in the papers weekend magazine, Dagbladet will run what seems to be the main article with the psychologist Nina Andresen, The ME-war

“Got well from ME with training and therapy. The brawl started when she wanted to help other patients to recover”.

Expectations are low. The possibility of just another smear are close to a 100%. Let’s create mess. Again. Let’s call patients vexatious. Again.

 

[Midnattsol]

This Saturday, in the papers weekend magazine, Dagbladet will run what seems to be the main article with the psychologist Nina Andresen, The ME-war

“Got well from ME with training and therapy. The brawl started when she wanted to help other patients to recover”.

Expectations are low. The possibility of just another smear are close to a 100%. Let’s create mess. Again. Let’s call patients vexatious. Again.

Another one I won't read.

 

[Snowdrop]

Is it time now that we can say that part of the definition of ME is that pushing exertion levels makes illness worse*? So anyone who claims to recover that way may have been ill but not with ME.

There is some latitude in where the level exists in any person but if they surpass their own set limit the result is illness exacerbation.

 

[rvallee]

“Got well from ME with training and therapy. The brawl started when she wanted to help other patients to recover”.

Let's rephrase it a bit and see how it goes:

“Got well from MS with shoving aged urine up her ass. The brawl started when she wanted to help other patients to recover”.

By all means go ahead and defend the equivalent of shoving urine up the ass to cure MS. After all the LP company claims their stuff cures MS. It would be great if real journalists could ask relevant questions instead of giving a public platform to promote quackery unchallenged. Since the publishing industry is clearly not up to the task and doesn't ask any questions about what they publish.

Once on the Internet, always on the Internet. Years ago such ridiculous nonsense ended up in archives and people had to dig it up painstakingly. It's some strategy to loudly make it unambiguously clear that they are total quacks. Not particularly good strategy but it's definitely some strategy.

To borrow from a famous quip: "please proceed, professor".

 

[dave30th]

One answer is certainly the fake mustache one.
But the history is almost certainly complex. BPS itself obviously goes through various phases from the original coining of the term to the current highlighting of MUS. Sharpe has a particular interest in liaison psychiatry as a political slogan and there may not be quite the same game being played in the US.

I guess any comment was rather specifically in relation to this Cartesian anti-pseudoCartesian claim. It is specifically about denying that 'medical' illnesses just belong to physicians. In the primary care setting this might be a way to persuade GPs to refer to psychiatry rather than internal medicine and that might be more relevant in the US. In the hospital setting it is about getting access to patients who would otherwise be under physicians. If you are at King's, which is associated with the Institute of Psychiatry then that is just psychiatry but if you are at Barts or Oxford then the liaison psychiatry route is more relevant, even if there is a separate inpatient psychiatric unit (the Warneford at least when I was there) as well.

Perhaps more generally what I mean by liaison psychiatry is psychiatrists who want to get in on the act with illnesses that might otherwise be seen by physicians. I think the technical term may have something to do with the way the NHS allocates resources to create' services' whereas in the US services are provided wherever the demand is enough to justify a business case.

a helpful analysis. In that sense, these MUS patients are not unlike our famous US "independent" voters, the ones with mushier or less rigid voting priorities who are can be poached by either side with clever arguments.

 

[Kalliope]

New round in Dagbladet today about the "ME war". There's a big feature article in the paper version and some articles online, one of them open.

The open article online is about psychologist Nina Andresen who promotes undocumented treatments for ME. She says the complaints this has led to is an attempt to gag her.

Several doctors, including Per Fink, are talking about harassment from activists. A psychiatrist who has recommended LP in the media and received complaints for this, talks about how awful that was for her.

Dagbladet: Full ME-krig: - Aldri opplevd lignende
google translate: Full blown ME war: - Never before seen anything like this

The feature article in the paper edition tells more of Nina Andresen's story, who was diagnosed with ME but recovered with a vegan diet, relaxation and breathing techniques, yoga, walks and by learning not to overdo things. She worked for the Norwegian Labour and Welfare Administration and had developed a seminar for ME patients on how to recover. This seminar received complaints and was pulled. She had also worked for the CFS/ME center at Aker Hospital. At the same time she started a Facebook group for people to share recovery stories about ME. She received complaints for this and her temporary position at the CFS/ME- center was not renewed. She has also received complaints via the Norwegian Psychological Association and the Norwegian Board of Health Supervision. All complaints were dismissed.

A doctor who had organised an ME conference with among other a lecture about LP had received complaints about this, but those complaints were dismissed and the conference went along as planned. She has never experienced an organisation as aggressive as the ME Association.

Henrik Vogt believes there are several reasons for patients claiming ME is physiological. He believes it's about worth, blame and shame and that some of the reason for the aggression in the debate is that psychological illness for many is a second class illness.

Georg Espolin Johnson is a doctor and expert for the Social Security Tribunal. He says that his statement about psychological mechanisms as a major contribution to the illness was not well received by the so-called ME activists.

Nina E. Steinkopf is mentioned as one of those activists. She gives a short statement saying that this is a professional dispute, where a handful of researchers and clinicians have chosen a controversial approach to the field. Those who should have cared for the patients try to threaten them to silence.
- They have a tendency to perceive criticism as personal attacks and harassment.

The Cochrane review on GET is mentioned and the Reuters article from last year is referred to where Lillebeth Larun says she has received a lot of attacks and threatening emails. She did not want to be interviewed for this article.

Per Fink is interviewed and tells that he had to use a fake name for a conference in New York and other stories of how he has been harassed.

The paywalled article with prof. Ola D. Saugstad is an interview where he says that as far as he knows no one thinks it is harmful to claim that there are psychological components in ME. But that the battle is about the explanatory model for ME and which consequences this has for the patients. The focus on CBT has delayed the understanding of ME with decades. In addition, several ME patients have deteriorated by CBT and LP. He says he has never denied that CBT and LP may be of help for some ME patients. But these techniques won't cure ME as they won't cure cancer. He refers to some of the recent biomedical research and says that the main focus must be here. CBT and LP has derailed the research that may uncover the core of this problem.

 

[cassava7]

@Kalliope, you're a saint for keeping your cool and for summing up this article for us.

Eventually it all boils down to Dagbladet being a tabloid, and as such, it sells sensationalism to its readers. Their staff knows it, their readers like it. And what's a better way to stir up emotions than putting out a one-sided, 12-page article titled "the ME war" that guns down a vulnerable population, without fairly and equally voicing their concerns?

Impartiality would have been a 50/50 split between GET/CBT/LP proponents and opponents. But Dagbladet is not interested in being impartial -- it doesn't sell.

They could have interviewed patients who have not recovered from lifestyle changes such as going vegan, doing yoga and breathing exercises.

They could have interviewed patients who have been harmed by GET or LP.

They could have interviewed patients who have participated in biomedical research studies in Norway.

They could have interviewed so-called "activists" who would have pointed out the methodological errors behind the studies on GET/CBT/LP, which render them scientifically void. Including David Tuller, who has sent Dagbladet a letter -- which they haven't replied to -- and who is more than ready to highlight just how many of the studies have been debunked. And the commercial conflicts of interest behind LP, too.

They could have interviewed biomedical researchers who have some insight into the organic pathophysiology of ME, especially coming from very ill ME patients; for example the researchers in Fluge and Mella's team. Or any of those who have signed the open letter to the Lancet, or the Danish ME Foreningen's open letter to the Danish parliament. And they could have featured them in the non-paywalled article.

But again: Dagbladet is not interested in being impartial -- it doesn't sell.

ETA: as for the researchers who were interviewed, it speaks volumes that they don't mention 1) the independent reanalyses of their own studies, 2) those of other studies on GET/CBT/LP, 3) studies on GET/CBT/LP with null results. They instead say the "advice we give is proven to help" (Malik / Wyller). Thinking about Lilliebeth Larun's Cochrane review which has been torn down by Vink [1] and Malik, Wyller & al's study which @Michiel Tack has dismantled [2], and regarding which Wyller hasn't replied to David Tuller's letter [3] (written in an professional, objective tone with no aggressivity).

In other words, these researchers are publically denouncing healthy scientific peer review and patient reports of harm as aggressive criticism that intends to censor them. In a tabloid. How is that not an attempt at silencing medical and scientific concerns about their treatments, which is exactly what they're denouncing? Their absence of ethics and scientific integrity is abysmal.

That Dagbladet sells sensationalism, so be it, but that these researchers are willfully engaging in this process with such statements is... I don't know, I lack the words for expressing this feeling of grief. A sharp knife through the hearts of ME patients is one analogy.

To Norwegian people, I'm sincerely sorry you have to deal with this situation and its consequences. Sending you lots of love and support

[1] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018;5(2):2055102918805187. Published 2018 Oct 8. doi:10.1177/2055102918805187
[2] https://bmjpaedsopen.bmj.com/content/4/1/e000620.responses
[3] https://www.virology.ws/2020/05/22/...or-author-of-norways-cbt-music-therapy-study/

 

[Sly Saint]

 

[rvallee]

New round in Dagbladet today about the "ME war". There's a big feature article in the paper version and some articles online, one of them open.

The open article online is about psychologist Nina Andresen who promotes undocumented treatments for ME. She says the complaints this has led to is an attempt to gag her.

Several doctors, including Per Fink, are talking about harassment from activists. A psychiatrist who has recommended LP in the media and received complaints for this, talks about how awful that was for her.

Dagbladet: Full ME-krig: - Aldri opplevd lignende
google translate: Full blown ME war: - Never before seen anything like this

The feature article in the paper edition tells more of Nina Andresen's story, who was diagnosed with ME but recovered with a vegan diet, relaxation and breathing techniques, yoga, walks and by learning not to overdo things. She worked for the Norwegian Labour and Welfare Administration and had developed a seminar for ME patients on how to recover. This seminar received complaints and was pulled. She had also worked for the CFS/ME center at Aker Hospital. At the same time she started a Facebook group for people to share recovery stories about ME. She received complaints for this and her temporary position at the CFS/ME- center was not renewed. She has also received complaints via the Norwegian Psychological Association and the Norwegian Board of Health Supervision. All complaints were dismissed.

A doctor who had organised an ME conference with among other a lecture about LP had received complaints about this, but those complaints were dismissed and the conference went along as planned. She has never experienced an organisation as aggressive as the ME Association.

Henrik Vogt believes there are several reasons for patients claiming ME is physiological. He believes it's about worth, blame and shame and that some of the reason for the aggression in the debate is that psychological illness for many is a second class illness.

Georg Espolin Johnson is a doctor and expert for the Social Security Tribunal. He says that his statement about psychological mechanisms as a major contribution to the illness was not well received by the so-called ME activists.

Nina E. Steinkopf is mentioned as one of those activists. She gives a short statement saying that this is a professional dispute, where a handful of researchers and clinicians have chosen a controversial approach to the field. Those who should have cared for the patients try to threaten them to silence.
- They have a tendency to perceive criticism as personal attacks and harassment.

The Cochrane review on GET is mentioned and the Reuters article from last year is referred to where Lillebeth Larun says she has received a lot of attacks and threatening emails. She did not want to be interviewed for this article.

Per Fink is interviewed and tells that he had to use a fake name for a conference in New York and other stories of how he has been harassed.

The paywalled article with prof. Ola D. Saugstad is an interview where he says that as far as he knows no one thinks it is harmful to claim that there are psychological components in ME. But that the battle is about the explanatory model for ME and which consequences this has for the patients. The focus on CBT has delayed the understanding of ME with decades. In addition, several ME patients have deteriorated by CBT and LP. He says he has never denied that CBT and LP may be of help for some ME patients. But these techniques won't cure ME as they won't cure cancer. He refers to some of the recent biomedical research and says that the main focus must be here. CBT and LP has derailed the research that may uncover the core of this problem.

Meh. That will age very poorly, it already smells pretty bad. These people frankly sound unhinged and detached from reality. Not exactly smart to make it loud and clear they are completely oblivious to what is happening to us and repeating the same old tired lies about this representing a small minority is just pathetic.

Thing is, they make everything about themselves. Those are personal grievances from incompetent people completely out of their depth and being shown the door but who are unable to process that they truly are incompetent and destroying everything. While they play around in their circle jerk for decades on end there are millions of real lives that are ruined in the process. These people have absolutely no stakes in the matter, this does not even concern them.

Sometimes it's hard to tell whether someone is simply incompetent but this dispels all doubt.

As for never seen anything like this, especially when in that lot is a self-proclaimed (or maybe actual, I don't know) medical historian, this comes off as especially ridiculous. It happened many times in the past and always for the exact same reasons. This is what happens when there are no consequences to making stuff up, people just get too comfortable spewing nonsense.

There's the doors, quacks, take it.

 

[Kalliope]

Nina E. Steinkopf, who was portrayed as a "ME activist" today in the article in Dagbladet, has written a blog post about her contact with the journalist. She also provides a critical walkthrough of the article.

Dagbladet has over 1.4 million daily readers. In the Magazine, I am portrayed in a negative way with statements that are not correct. My fellow patients are consistently referred to as "activists". Many have been reporting the adverse effects of LP for years, and several have pointed out weaknesses in the study that are being used. All we ask for is equal treatment based on solid scientific evidence.

I wish Dagbladet in advance gave me more information about what I was asked to answer. I thought journalists at least checked the facts. I had a small hope that the patients' side of the case was illuminated, and that Dagbladet was aware of the power relationship between the patient and the role of authority that Nav, therapists and researchers have.

I hoped in the long run that Dagbladet would be conscious of its task to protect individuals and groups from abuse or neglect by public authorities and institutions, private companies or others. Instead, Dagbladet contributes to a dark chapter in medical history, and in the comments section of FB, patients are once again faced with hatred and harassment.

Dagbladet-journalistikk - en belastning for ME-syke
google translation: Dagbladet journalism - a burden for ME sufferers (2)

 

[Jonathan Edwards]

There are so many points of view now in the public domain. Moreover, there is no longer any simple them or us I suspect. As often as not they turn out to be us after all. No doubt a large number of people will lap up a tabloid story. But on the other hand most forget they read it by lunchtime. And readers into individual and patient rights may say 'activists' - that is what we should have isn;t it? And if physicians read it the absurdity of LP may not go unnoticed.

In the UK the BPS crowd have been careful to stick to a narrow establishment story. Everything is kosher academe. But the Norwegian group seem unaware just how ridiculous they will seem to anyone looking critically. The UK crowd have kept fairly quiet about patient activism since about 2016. Things have moved on. Intelligent and articulate patients are sitting on important committees.

 

[dave30th]

Intelligent and articulate patients are sitting on important committees.

And high-profile scientists and academics are backing them up. This parallels what happened over several years in late 1980s with HIV, ACT UP and US regulations on pharmaceuticals.

 

[Hoopoe]

I think of the BPS narrative as a form of brutality inflicted on patients. It doesn't involve any obvious violence but it has been extremely effective in depriving patients of adequate support, recognition, research and treatments. No other illness is treated like this. No other illness is so neglected. That's why there is activism, which all considered is rather tame I think.

Meanwhile the BPS people are busy trying to smear patients into submission so that they can do another round of fraudulent, outcome-switched, uncontrolled clinical trials and pretend they have worthwhile treatments. To them we are basically livestock to be milked.