Lightning Process study in Norway - Given Ethics Approval February 2022

I don't understand what's going on in Norway. The page you linked to is basically the website of a guru:

And yet not only is this guru officially backed by the Norwegian government and health authorities, but he also receives funding for "scientific studies" on his guru woo-woo?

I could understand that Norway may want to save cash by denying ME patients access to proper healthcare and disability aids. But they're blowing tons of money on LP practitioners and on funding "scientific studies" on LP. I would have thought there would be a cheaper way to tell patients "no, we won't help you, go away".

In France, Scandinavian countries are often viewed as examples for social progress. So much for that... I'm deeply sorry for the horror you are going through.

 

Also... all of the shenagnigans around SMILE are worth a mention, particularly given Esther Crawley's name being linked to this new research. Crawley's history of making false and misleading claims also seems of some significance.

 

I think the 'motto' for LP and similar 'therapies' is 'fake it till you feel it';
see

https://www.dailymail.co.uk/health/...cret-Emilys-14-lost-years-Esther-Rantzen.html

eta: although she 'recovered' with LP she apparently still has ME
https://www.s4me.info/threads/artic...elf-isolating-with-daughter-who-has-me.14084/

 

Since this thread is active I just thought I'd pop in and point out for anyone new to Phil Parker and the Lightning Process that reading this thread could be useful. I'm hoping to add to it to keep up to date.

 

Two articles about ME in the Norwegian newspaper Dagbladet today. Both are paywalled.

One is about a doctor who suffered from ME and recovered with mindfullness. She is active in the "patient" organisation Recovery Norge which promotes Lightning Process.

The other article is about the planned study on Lightning Process. The article is titled "Worried that ME sufferers will be scared away from treatment".
The article is only in the paper edition as far as I can see, but it will probably be online soon. Will share link then.

Here's a short summary:

Norway's National Research Center in Complementary and Alternative Medicine - NAFKAM - sent an alert to the Norwegian Directorate of Health a few years ago regarding Lightning Process because they had received stories from ME patients about deterioration following the treatment. March 2. this year they confirmed their assessment of the risks concerning LP.

Signe Flottorp - research director at the Norwegian Institute of Public Health demands that this alert gets retracted and that NAFKAM offers an apology.

The warning from NAFKAM is based on old and frail data. NAFKAM never checked whether the patients actually had ME and NAFKAM didn't mention "the research that shows that the LP technique can help ME sufferers".

The NAFKAM director Miek Jong says they've received several reports of negative experiences with LP. She will initiate an "expert dialogue" about LP and give their website an update, but will not retract their warning.

Jong also says that their basis for not including the LP-study from 2018 in their assessment, is the criticism it has received from several researchers. "As proof for this, she points to a text on the American journalist's David Tuller's ME-blog".

Ingrid Helland, leader of the National Competence Service for ME/CFS says there is no reason to doubt the results in the study. She says that questions were asked when the study was published, but that an update of the study has since been released where these questions were addressed.

Ingrid Helland says it's striking that this warning from NAFKAM comes now, as a Norwegian study on LP is about to start. Signe Flottorp believes there are forces behind this that wishes to influence ME research and ME treatment and that NAFKAM is letting itself be used by ME activists' fight against LP and CBT.
Flottorp also says she would not define LP as alternative treatment.

"Dagbladet can reveal that blogger and journalist David Tuller has received financial support from the Norwegian ME Association".

Professor Vegard Bruun Bratholm Wyller says it's strange that NAFKAM won't keep to facts and science. He says that most patient organisations support different kinds of research, but that the ME Association works against researchers with a more complex approach and that thinks this is also about psychology.

 

Is this now Tullergate? The greatest crime in health care reporting in history.

It is interesting that senior medical and research figures in Norway are defending Lightning. In the UK there hasn't been much defence of LP. Those who defend CBT probably see it as unwanted competition. Even CBT defending seems to have faded out in the UK with most of the vocal people retired or keeping mum.

There is every 'reason to doubt the results in the study'. To say otherwise is complete incompetence.
I would be happy to write a letter if it helped, but I suspect I will simply be regarded as another activist.

 

Surely it has to be? I have never been as shocked as I am today after reading the newspaper. To bash out against NAFKAM that is there to receive anecdotal evidence from patients that experience worsenings from alternative treatment, I have to say is as low as it gets. This journalist, Jorun Gaarder, has also consistently put out biased articles, and never with two sides of the case

"There is every 'reason to doubt the results in the study'. To say otherwise is complete incompetence."

Yes! I mean the study failed to meet its objective endpoint (school attendance), hence the study showed that there was no effect, but even still its being sold as it did, because of meaningless questionnaire-results

"I would be happy to write a letter if it helped, but I suspect I will simply be regarded as another activist."

I expect the norwegian ME-association to respond when they have capacity, im sure @trudeschei would love to include a piece from you

 

Didn't Flottorp have some role in the Cochrane review of exercise therapy for CFS? I know I've seen her name before and it was associated with bad science.

 

Yep! She is anti-science when it comes to ME

 

Also, NAFKAM director Miek Jong could be a valuable ally.

 

That would have been both wonderful and useful - particularly from someone with your academic credentials. Speaking of that, I'm disappointed Dagbladet is doing the same as the Reuters article, omitting Dr. Tuller's academic credentials. That's just childish.

@Jonathan Edwards I can send you a translation of the full article within a few hours.

 

Yes, she's been a strong advocate for a biopsychosocial approach to ME for many years. On the other hand she has also raised the need for more research on illnesses that affects mostly women.

 

It is as sure as the blueberry flower. Every spring there is a solid uppercut from the LP-activists, more than anything showing contempt for science, for the majority of patients and generally just trashing trust.

Now blaming NAFKAM instead of discussing the real issues. Never asking why some might benefit and a whole lot get worse. The important questions and differences doesn’t matter at all. It is all about personal prestige, maintaining power, money and ignoring everything that has anything to do with science.

 

The article «The physician Marte got well from ME» is paywalled. But what I assume is the essence of it, is easily accessible via Recovery Norway, also with a link to Tidsskriftet, a paper for physicians. It is great that Marte recovered. She is now working as a psychiatrist with a 4 day intensive treatment that adresses OCD and anxiety disorders. In 2008 she was on her way to work in Uganda, but got ill and had to go home. That was the start of her anecdotal journey. She diagnosed herself as having mono, and it was confirmed later through a blood sample that she at some point had been through the infection. In 2010, two years after falling ill, she was recovered. She was almost instantly recovered after attending B. Stubbhaug and his stress clinic or whatever it is called. Here she did a 4 day intensive program.

Because this touches LP, the planned study and much more, I would like to point out a couple of things that are striking and important, as it often is in these kind of anecdotes. This is one simple anecdote, but as indicated, many of the Recovery Norway anecdotes has the same characteristics. That is important, because it is quite telling for who might benefit from these approaches. If so, we could say that a subgroup of patients diagnosed under the umbrella ME/CFS could make good use of mental techniques. Then I would be the first one to stress the undisputed fact that the diagnose of ME/CFS is a complete mess. But focusing on why it works for some and why not for others, even causing harm, the similarities and differences among patients, are the important questions everyone should look closely at. But quite the opposite is happening, when overselling, when politics, prejudice and dogmas are the driving forces, not the greater good of all patients and different sub-groups under the umbrella.

One thing that under all circumstances are fortunate for her anecdote, is that she took appropriate measures early on. We don’t know exactly how much a good start has impacted her improvement, but from a logic point og view, from medicine in general, doing things right is absolutely vital. It might not cure you right away, maybe not at all, but it surely won’t harm. That said, taking a period of proper rest early on could be important. She should appreciate and consider herself one of the the lucky ones, bearing in mind that the majority of ME-patients dosent have the luxury of a good start. There are several reasons for a good/bad start. The advice given/not given, personal approaches to a challenge, etc. I find it important to make a point itself, out of the short duration here. In relative ME-terms two years is short. And that might just be very important when considering recovery and possibility of spontaneous recovery. Short duration and good measures early on would probably play a big part no matter of intervention.

What I find most striking, is that she obviously have had what I would call a bad thought pattern, something she in many ways admits. The big question here is, how does that fit with reality and on a group level? We know how these people explains ME this way, fear, avoidance and those things. But is that really the case, and if so, wouldn’t every patient just work out its way to full recovery just fine with Stubbhaug, LP and CBT? Is it really that easy? Of course not. A striking example of her not-so-good thought pattern, is that she never would walk uphill for instance. Literally. That says a lot of how fixed one might be, how damaging that could be in a very unhealthy way. One could just imagine how never walk uphill breaks down in her everyday management. Oops. And then again, it is not all that strange that if a wrong thought pattern, so to speak is the real problem, you could probably improve things quite easily and fast. The great problem is that ME-patients in general dosent fit the description of this reality. Majority of patients keep it up, not falling into fear or avoidance or other thought patterns that are not helpful. Its the other way around and that is what makes this model so incredibly nuts.

 

So what?

@dave30th has received donated funds from many patients and ME advocates. His only remit ( as far as I'm aware) is to look into matters and report his findings. Whatever they may be.

The outcome of the trial will make no financial difference to David Tuller. If we found a cure for ME tomorrow and, pandemic permitting, all forsook the internet to go live our lives it wouldn't put a stop to David's career. There are plenty of other things he could be investigating, I'm sure.

Will Liv Landmark not make money (above and beyond remuneration for her time spent working on the trial)? Will it make a difference to her income if the trial is successful or not? You bet it will.

Is it just me, or do these "arguments" seem tired and familiar? Didn't we already discuss this when the Crawley creature did her LP trial?

 

This is the report from NAFKAM (Norway's National Research Center in Complementary and Alternative Medicine) on LP from March this year which was mentioned in Dagbladet's article

NAFKAMs risikovurdering av LP består
google translation: NAFKAM's risk assessment of LP consists

- In accordance with our mission, in 2011, we notified the health authorities of poor CFS / ME processes related to the self-help technique Lightning Process (LP) and possible risks associated with this, says director Vinjar Fønnebø at NAFKAM.

However, the debate on LP is still current. Throughout, criticism has been raised of LP courses for children and adolescents with ME diagnosis, as well as research done on LP. In addition, public agencies have been criticized for referring to LP as a relevant coping course for this patient group. NAFKAM, for its part, has received several reports from ME / CFS patients who have used LP in their own treatment, as well as questions about whether these do not form the basis for new alerts.

 

Article is now online

Dagbladet avslører: ME-striden
Frykter ME-syke skremmes til å droppe viktig behandling

google translation: Dagbladet reveals: The ME battle
Fear ME sufferers are scared away from important treatment

 

Yes, reports of harms can be used to argue against a treatment. Does she think this is unfair? My eyes are rolling so hard right now.

Speaking of struggling against something... it looks a lot like proponents of LP and CBT and similar approaches are struggling with the reality that they cannot produce convincing evidence that these approches work. They're trying so hard but the result is always at best a small transient effect that may be entirely illusory. Is it impossible to find positive effects for these approaches without serious design flaws? It looks like it.

 

Being on the wrong side of quackery with the alternative medicine industry is like being told by the village drunk that you have a drinking problem. Or a notorious gambler who lost everything twice telling you that you have a gambling problem. It's hard to process the absurdity of actual medical authorities defending pseudoscience against the very industry that is defined by pseudoscience because it is too woo for them to defend.

This is frankly becoming excessive at a "the insane are running the asylum" level. The kind of moment that should only end in replacing everyone in a leadership position. What in the hell is going on over there? Are they going to start diagnosing people with Tarot cards and "treat" them with healing hands?

Also those are clearly one-sided personal opinions, not journalism. Why are newspapers allowing themselves to be used this way?

 

Her "expertise" appears to be, no joke, reliability of evidence.

Which is like a self-proclaimed pro chef serving you a cold hot-dog on a white bread slice. Oof. There are so many things wrong with medicine holy crap what is this nonsense? It's like the whole field is a mix of science held together by spit.