Lightning Process study in Norway - Given Ethics Approval February 2022

Regarding the lopsided coverage in Khrono, the journalist writing most of the ME-related stuff, Amanda Schei is apparently closely related to this guy:
https://twitter.com/user/status/721216849388683264


He's been part of a think-tank together with Linn O. Getz (Vogt's PhD supervisor). ....And has of course published an opinion piece on magic thinking, championing a BPS style approach to medicine.

Seemingly ticks most of the boxes for the usual COI, heh..

Edit: He is her father.

 

The Recovery Norway letter to REK linked to in this article is also interesting: https://translate.googleusercontent.com/translate_c?hl=en&sl=auto&tl=en&u=https://khrono.no/files/2021/07/01/2021%2006%2013%20Uttalelse%20anga%CC%8Aende%20vedtak%20om%20_En%203-dagers%20intervensjon%20for%20CFS_ME_.pdf&usg=ALkJrhiPqh6kG1VtfWYZ_wNe9FtKOdlkMw

Vogt also posted comments underneath that include him saying how he doesn't personally attack people, before presenting rather insulting claims about the supposed motivations of 'activists'.

 

While the LP- debate continues in many directions, lets not forget the very basics. Never forget what I label as the (causation) model behind LP. Calling it a flawed model is to weak. In all its absurdity, it is a fake model. A fake model is dangerous. LP promoted as some sort of remedy for ME is ludicrous. Everything spinning out of a fake model, hereunder a study, should come to an immediate stop when trying to connect LP and ME.

Don’t claim to know the cause of ME. Also avoiding to much speculation. Fine. So what are the strengths of patients? Well, we know a whole lot of how our body and mind works before disease and after, know how we have dealt with and deal with it, and many patients have also experienced LP. In total, there are many experiences piling up to a lot more than an anecdote here and there. These patient experiences are worth paying close attention to.

What patients, professionals and anyone that have a clue of humans and human nature know, is that the fake model of LP for ME-patients, at least a major subgroup, is utter nonsense. It not just a little twisted, slightly missing, but exactly the opposite of how some subgroups within “ME” think and act. That’s really something that many should think about for a minute or two? People who have interest in the wellbeing of patients should take a very close look at the model for LP when carrying out their work, when giving thumbs up and a blessing to a study or whatever. Everything should stop with the model. Period.

It is also very important that patients considering LP based on a recommendation or any other reason, take a close look at and consider the model, the very basics of LP. If you are an ME-patient that has no motivation at all, no guts, constantly talk to yourself in a negative way, focus constantly on symptoms, believe that you cannot do anything at all, well then LP may be something for you. If not, stay away!

But who are these people that the model of LP describe? They are not ME-patients CCC with PEM as cardinal symptom.

1. They present a model that has no resonance whatsoever for the majority of patients. Isn’t that strange? What do these people make of that? Still they present a model merely created out of very bad attitudes, little knowledge of humans and speculation, - that has no evidence to it. What about sorting out the absolute basics before proceeding?

2. There might be exceptions to the rule of how the majority of patients approach the ultimate “challenge” called ME. But if so, they are in great minority, they don’t represent the majority of patients who have approached disease in the most positive and sound way. The majority of patients “think right” and have done/are doing exactly what the “society” and medicine expect them to do. Keep calm and carry on, no matter. So that’s exactly what patients have done.

3. Then it must be stressed and underlined that a lot of data and experiences, tell us that the «go on no matter what»-approach not was the correct approach, especially not in the initial phase of disease of ME. Another thing to think really hard about, - that what medicine and old dogmas told patients to do, made them much worse.

Patients doing exactly the opposite of the LP-model have paid a heavy price when actually trying to carry on at/over limits. That requires all the motivation in the world, ignoring and living with symptoms and a great deal of resilience to deal with adversity and PEM. The cost is priceless. Patients still might be ghosts of what’s considered “normal people” and functioning, but they sure as h.... have used every positive output of the brain and muscle fiber to carry on. That’s the truth. Then to be told by a fake model what’s wrong and the totally opposite of how things are, well, that’s interesting.

4. Many of the same patients as in number 3 over, have also added LP, often because health is destroyed, help and/or advice are zero and the willingness to get healthy/healthier means more than anything. So how does it work adding LP to an already great mindset which is not part of the problem whatsoever? It should surprise no one, that more of what you already are doing, pushing beyond limits, can and will cause harm. They already experienced harm simply by carrying on. LP on top of this is a no-go and recipe to disaster.

5. Despite this, the many experiences are totally ignored, instead taking a few positive anecdotes and highlights them, as some kind of “evidence” that it could help all. That’s a blatant lie, but they don’t care. They know or must know about the different subgroups within “ME”, and they know or should know that LP can be dangerous to many patients. LP may have side-effects way stronger than any drug, if “prescribed” to the wrong patient

As started. The fake model of LP to ME is dangerous. Many people should take a long hard look at it. How is this possible? Could this really carry on? STOP!

 

That's some Deepak Chopra level crap a few replies down when someone points out to him he clearly doesn't know a damn thing about ME. The level of Deepak Chopra level crap in medicine is too damn high.

As we all know, it's when you have nothing but woo-filled thought-terminating clichés that you know you're on to the truth. Oh wait the exact opposite but whatever.

 

The article is now updated:

Change log:
The case has been updated and clarified on Friday 2 July, at 11.30. We draw readers' attention to the fact that Henrik Vogt, together with eight other doctors, wrote a letter to REK in 2017, asking them to reconsider the soundness of an ME study: Doctors at Haukeland University Hospital wanted to try cytotoxic drugs (Sendoxan) on ME- patients.

 

Yea I recall this "There was no significant improvement on any of the trial’s objective measures, such as numbers returned to work or levels of fitness." [https://journals.sagepub.com/doi/10.1177/1359105317703785 by Mark Vink]. So why not even use these objective measures of whether an intervention works for ME/CFS?

 

Just the fact that this is getting such media coverage is incredibly suspicious as to who is abusing their authority here. The only real thing to cover here is how cult-like pseudoscience is being taken seriously by medical authorities. Everything else is irrelevant.

Late-stage medicine looks exactly as awful as late-stage capitalism with the backdrop of climate disaster. Corrupt and mindlessly idiotic. But especially corrupt. This is several scandals rolled into one. Exactly how much blatantly corrupt pseudoscience is being pushed over there? Are they genuinely stupid? Or just plain corrupt? Either answer is terrible.

 

This appears to be plan B, Per Fink of course. If it's not the LP, it's basically the LP with a fake mustache. It explicitly refers to the rejected study to justify it. I will safely assume they will actually use the rejection in Norway to emphasize how it's actually more important than ever, since nothing matters, especially facts.

https://twitter.com/user/status/1412105506085289987


https://www.tryghed.dk/saadan-stoet...nationer/mestring-af-funktionel-lidelse-33705

------------------------
Discussion of this Danish study is continued here:
General thread on functional disorders in Denmark

 

Straight up lying sure is one way to deal with criticism. You see those droids? They are not the droids you are looking for. And calling patients pointing out basic facts trolls. That's how you know Parker is now one of the gang.

It's not as if any of this matters, people are allowed to lie about anything they want, it's just sad that it's actively encouraged in medicine, has been normalized as standard practice.

(The comments are on Youtube, BTW)

https://twitter.com/user/status/1412426032746016775

 

Maybe already discussed but it seems there was a prior attempt to do this study in 2012. Or maybe this is the same attempt?

https://www.dagensmedisin.no/artikler/2012/09/27/vil-bruke-ni-millioner-pa-omstridt-me-metode-/

 

Its the same shit in different wrapping, and it was prior to Landmark getting as involved as she ended up being, and the issue with royalties is one of the reasons why they called it an "3-day-intervention" in the new project.

 

That article was interesting to read again.

At this time, Landmark was part of the Norwegian Institute for Public Health's research group for a trial on Lightning Process.

Per Magnus from the Norwegian Institute for Public Health said in the same article that they wanted to be independent from Phil Parker. They wanted to use the same "treatment principle", but it may no longer be called Lightning Process at a later point. If it was to be part of treatment within the public health care system, it couldn't have any ties like royalties.

The protocol for the study back in 2012 was 200 patients, where 100 would take Lightning Process and 100 get treatment at a hospital (whatever that implies), with observation period for 2 years.

Back in 2012 Landmark was asked by this medical newspaper if she had assessed her impartiality since she's making money on what they were planning to study. She answered that she had, and therefore would not make any decisions concerning the trial, only provide some suggestions. She claimed to have "clinical experience" which could be of interest which is interesting from someone who is not health care personnel and also claims to only provide a course, no treatment.

Move forward a few years, and there are no COI problems with being a PhD candidate with a research project on the same method.

 

L Landmark's perseverance alone is evidence of her allegiance to this 'therapy' model.

 

And this is one of the primary symptoms of the problem of false illness beliefs.

Those that have false illness beliefs are wholly wedded to a single treatment. A single treatment that can treat almost anything.

Just like Chalder et all, Landmark has a cure in search of a problem it can fix. No interest in what really causes the problem, no interest in gathering data about harms, no interest in observing and recording which people respond this way and which respond some other way because all they're interested in is pushing the treatment.

No matter who gets hurt.

 

Yep. A bit like double-glazing. We sell it. We want you to buy it. What do you mean it's not right for you! You clearly do not know what is right for you - our windows are right for everyone.

 

This is a relatively rare and welcome item--a rather scathing column about the whole brouhaha.

SIGMUND OLAFSEN
Worthless and unethical ME research
As a researcher, I am frightened that there are still some who want self-reported, subjective effect goals as an outcome of research, writes Sigmund Olafsen.

https://khrono.no/verdilos-og-uetisk-me-forskning/595007
https://translate.google.com/transl...etisk-me-forskning/595007&prev=search&pto=aue

Wow.