Lightning Process study in Norway - Given Ethics Approval February 2022

Midnattsol said:
Eysenck called and thanked for keeping the spirit of his work alive o_O It's Silje Remes research group that is talked about in this article today on optimism and cancer operation outcome.

"A number of studies have shown that optimism has a protective effect for cancer patients, both psychologically and physically."

Researchers use hypnosis to help breast cancer patients cope better with the operation
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oh dear oh dear..

quote from Reme from the article:

- We have a hypothesis that what the patient brings to the operation determines the prognosis. If you have a lot of anxiety and stress and face a difficult situation in life without much social support, this can affect the outcome of the operation and the way forward.
 
Kalliope said:
oh dear oh dear..

quote from Reme from the article:

- We have a hypothesis that what the patient brings to the operation determines the prognosis. If you have a lot of anxiety and stress and face a difficult situation in life without much social support, this can affect the outcome of the operation and the way forward.
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Interesting how they keep bringing up social support but then focus on working on the patients attitude.

Another part of the article (not Reme's research)
The three factors said:
There were three things in particular that proved to be particularly important for maintaining good mental health through illness and treatment, the researcher found.

Firstly, it was about the patient experiencing influence on his own treatment.

The second is about support received from friends and people in the environment.

The third factor that was important was about how the patient thinks about breast cancer.
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This third factor is obviously influenced by the two others (and prognosis, and safe economy, and if one have lost someone close to cancer ++).
 
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There were two articles about breast cancer and psychological support/patient's attitude in forskning.no today. In the second article the Norwegian Cancer Association seems to sum it up pretty well, in my opinion:

(google translated quote)
According to their surveys and feedback, the patients most want a professional to talk to. This is not follow-up of an extensive or long-term nature.
If cancer patients have more extensive needs and a need for a psychologist, this will have to be followed up as part of the medical. Here, the GP/doctor will have to refer further.

Most cancer patients do not have these needs. Nevertheless, it is important that those who need it also have access to a psychologist. From 2020, it is required by law that all municipalities must have a psychologist, writes the Cancer Association in the email.
 
Kalliope said:
We have a hypothesis that what the patient brings to the operation determines the prognosis. If you have a lot of anxiety and stress and face a difficult situation in life without much social support, this can affect the outcome of the operation and the way forward.
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They literally don't understand that social support isn't some abstract thing? That it means actual support? Tangible, physical in real life.

It's not like someone encouraging you while you're moving out. It's someone actually helping you move out. By moving stuff from where it is to where it needs to go. It's helpful, it's not some state of being.

WTH? Have they gone full spiritual? This is the just-world fallacy again, and basically doesn't consider the actual naturalistic world. Never go full spiritual. Or even part spiritual when other people's lives are involved.
 
Midnattsol said:
Here is the translated transcript of the program for anyone interested :) It was a ~15 minute segment and turned into nearly five pages so there's a bit to get through.
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Interesting discussion on Vogt's FB page about this:

https://www.facebook.com/HenrikVogt...He3wo3MaohVD1KH36fTbn66GpQvcUMmLmFiBo9RxLj8rl

Also, funny the Vogt introduces his comment with "Below you can read clarifications from Recovery Norway of some misinformation that came up." - He's just created a patient organisation to speak for in his facebook debates.
 
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Adam pwme said:
I've uploaded the TV debate to YouTube and added English subtitles.

Thanks to @Midnattsol for the swift translation.

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Thank you for the work to make this accessible to non Norwegian speakers.

Every country needs at least one Nina Steinkopf, if not several.

So frustrating that the Lightning Process activist did not answer a single question directly; such skill to sound apparently reasonable while misrepresenting and misdirecting to such an extent.
 
Nina E. Steinkopf has commented the debate on Facebook.

This is a google translation of the comment:

On Thursday 2 March 2023, I met Silje Reme for a discussion on Dagsnytt18. The topic was requests for access to the research project she is part of, where 120 ME sufferers will be treated with the alternative method Lightning Process. https://tv.nrk.no/se?v=NNFA56030223&t=2115s

As usual, my professional criticism of the study design was met with accusations of "activism". Rather than discussing research methods, Reme replied that it is not certain that many people agree with me in my criticism. She may have forgotten the appeal in 2020 that asked the Regional Ethics Committees (REK) to consider six methodological objections to the project. It has been signed by 2,100 people: https://www.underskrift.no/vis/7935

Reme said that the project has received a demand for access to the researchers' internal discussions. It is unknown how much time the researchers have spent on this type of access requirement. According to the Khrono newspaper, there was "one who wanted 'all correspondence' to and from the project manager and the research fellow in the project." One. https://khrono.no/universitetene-sier-nei-til-a.../757972

There is broad agreement that this type of document is not covered by the Public Information Act. Therefore, it should be easy for the universities to refuse such requests.

Rector Svein Stølen may have a duty to defend the researchers at UiO. At the same time, it is sad that he does not advocate for better quality in research. The task of research is falsification; to try to disprove own hypotheses. This project, on the other hand, is rigged for a positive result and will have negative implications for the patient group for a long time.

User participation in research is enshrined in the law. The research fellow in the project, Live Landmark, has met this requirement by using the organization Recovery Norway - which she herself co-founded. See the founding document here: https://melivet.com/.../recovery-norge-er-en-lightning.../

In familiar style, those of us who promote academic criticism of the project - and others who speak out on the topic - are attacked. Head of Recovery Norway, Henrik Vogt was, as usual, quick to attack me on Facebook. He accuses me of being prejudiced against mental illness while at the same time preventing me from answering the accusations: https://www.facebook.com/HenrikVogt...QtJhGhpibrpNPNsVdnRDiQxyZuGL6zK8NCMp5AcVJhypl

There is a limit to how much information comes out within a few minutes on Dagsnytt18. Here is more of what could have been said, i.a. about Reme's claims about police protection at a secret ME seminar and how LP supporters use the same tactics they accuse others of: https://khrono.no/den-stadige-svertingen-av-me-syke/757788

I perceive Reme's plan as one of many where it seems that the purpose is to smear the patient group and silence critical voices. https://psychologisk.no/.../latterliggjoringen-i-harald.../

It is regrettable, but not without reason, that the debate about the Lightning Process as a treatment for ME is polarized.
I wish the researchers in this project would listen to professional input from the majority of the patient group.

I hope someone in the media will go into this thoroughly, make a longer case and direct a critical eye - not only at us patients but also at this dark corner of the research environment. Most of the excavation work has already been done.

Just get in touch.

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A great opinion piece by associate professor in Naturfag (biology) at NTNU and previous science journalist at NRK (our national broadcaster) on the study:

Media sviktar samfunnsrolle i studie om alternativ behandling
The media fails to play a role in society in a study on alternative treatment

"On Thursday 2 March, University of Oslo Rector Svein Stølen appeared on Dagsnytt 18 as a defender of alternative treatment. The rector found it necessary to step in and defend researchers against questions about access.

The roles seem to be turned upside down when it is the patient in the studio who has to remind that ME patients deserve studies of high scientific activity.

Seen from the sidelines, it is startling that the LP researchers' criticism of the access issue receives journalistic coverage, while a number of other topics in the case do not."

Edit to add: In a tweet the author writes she tried to get the opinion piece into Khrono, NRK, VG and Dagbladet but they refused.

Khrono and Dagbladet have been among the worst on ME. NRK has been a bit hit and miss, same with VG.
 
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Midnattsol said:
A great opinion piece by associate professor in Naturfag (biology) at NTNU and previous science journalist at NRK (our national broadcaster) on the study:

Media sviktar samfunnsrolle i studie om alternativ behandling
The media fails to play a role in society in a study on alternative treatment

"On Thursday 2 March, University of Oslo Rector Svein Stølen appeared on Dagsnytt 18 as a defender of alternative treatment. The rector found it necessary to step in and defend researchers against questions about access.

The roles seem to be turned upside down when it is the patient in the studio who has to remind that ME patients deserve studies of high scientific activity.

Seen from the sidelines, it is startling that the LP researchers' criticism of the access issue receives journalistic coverage, while a number of other topics in the case do not."

Edit to add: In a tweet the author writes she tried to get the opinion piece into Khrono, NRK, VG and Dagbladet but they refused.

Khrono and Dagbladet have been among the worst on ME. NRK has been a bit hit and miss, same with VG.
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So good when outsiders understand what's going on!

Helmfrid has a short summary in English of the opinion piece in this tweet:

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Following the publication of the Reuters special report about targeted harassment of ME researchers, Sharpe and Wessely had a twitter exchange in which they admitted that there is no harassment or trolling, rather that there are too many complaints and requests taking too much of their time away from research, that it is those complaints and legitimate requests they call harassment.

It seems like the same claims have been made in regard to this sham study, and that they are also, *shocked face*, complete BS.

It was recently reported that a "storm" of FOIA access has deluged researchers, making them unable to do their work.


Storm of access demands against researchers; What storm, Khrono?
https://melivet.com/2023/03/17/storm-av-innsynskrav-mot-forskere-hvilken-storm-khrono/
https://melivet-com.translate.goog/...khrono/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en

On 7 February 2023, the newspaper Khrono published the case " Insynsstorm against ME researchers: - Completely absurd ". Professor of psychology Silje Reme says that the researchers in the project where 120 ME sufferers are to be treated with the alternative method Lightning Process (LP) have received so many requests for access that it disrupts everyday work.
...
Now it appears that a few people have sent a modest number of access requests regarding the LP study. These requirements are mainly dealt with by the administration at the various agencies and not by the researchers themselves.
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Viktor Håland has applied for access and found that the National Research Ethics Committees, NEM, have received 8 access requests. NTNU has received 9. See Håland's thread on Twitter .
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I am one of those who have sought access to the LP study. During a three-year period - from April 2020 to today - I have sent 5 access requests to NEM, 5 to REK Midt and 6 to Lørenskog municipality. In comparison, a Morgenbladet journalist sent 18 access requests to UiO in the course of a week in another case.
​
Unethical means to achieve specific ends always end up the same: with unethical ends. The completely unprofessional behavior of these people is a blight on the medical profession and is the exact opposite of what medicine is even about.

As is the fact that they are doing this in broad daylight with no objections within the profession and the institutions that hold it accountable, or fail to anyway.
 
rvallee said:
Following the publication of the Reuters special report about targeted harassment of ME researchers, Sharpe and Wessely had a twitter exchange in which they admitted that there is no harassment or trolling, rather that there are too many complaints and requests taking too much of their time away from research, that it is those complaints and legitimate requests they call harassment.
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Do you have a link for that?
 
inox said:
They framed this as patients advocates trying to get access to internal project documents and privat discussions among researches for an ongoing research project.

Totally a spin to create outcry towards ‘terrible activists patients’ and paint the picture of abuse.

So of course several other entities made public annoncements siding with Reme and co, internal documents in ongoing research is of course not part of FOI laws.

Reme just ‘forgot’ to mention the request have been about communication around the project - funding, ethical approval etc. Not insight into the research data themselfs etc.

This was a hit piece.

Remember requests for insight have exposed both Flottorp and Reme trying to influence the etichs commitee. They probably didn’t like that…
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I occasionally respond to (some of) the Ministers correspondence (when we have one - I'm in Northern Ireland!)
If people are playing silly games then respond publicly/via social media highlighting that and maybe tag an elected official - particularly the Ministers party - and the university head (vice chancellor).
When I'm responding I try to do some research --- what's the background? So the Ministers minions/elves/officials should pick up on this and warn the Minister.
The University head may not want employees making false claims --- and universities rely on public funding --- the university head might want these "problem" staff sanctioned/curtailed!
 
Nina Steinkopf writes about how a participant in the study have been excluded after first been included and completed preliminary screening, due to critical views of the biopsychosocial model on social media.

The leader of the institute of psychology writes to the participant (google translate):
Magne Arve Flaten said:
You were recently included in the study. According to information from some people involved in the study, you have over time […] been active in social media with criticism of a biopsychosocial understanding of ME and of professionals who have such an understanding. You have also been critical of the study in social media. This is of course completely legitimate and it is healthy to have professional discussions.

On the other hand, motivation and a hope that the treatment will work is necessary for a psychoeducational method such as the one used in the study to be effective. Inclusion of people who have no motivation to participate in the study can create a situation that challenges the quality of the PhD work and the PhD candidate's study environment, and can affect the other participants. The consequence of this could be that the study is affected in a negative direction, and as the person responsible for research, you understand that I cannot allow that.

On the basis of possible adverse research-related consequences, I conclude as the research manager that you cannot otherwise participate in the study.
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How will this method work outside a clinical perfect trial if the slightest skepticism in the environment is enough to not make it work...? Sure psychological "think yourself healthy" seem to be more believed than other type of alternative medicine, but there will likely be som negativity still.

Studiedeltaker var kritisk; ble ekskludert
Steinkopf often also publishes in English, but here is a google translate for now:
Study participant was critical; were excluded
 
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Midnattsol said:
Nina Steinkopf writes about how a participant in the study have been excluded after first been included and completed preliminary screening, due to critical views of the biopsychosocial model on social media.

The leader of the institute of psychology writes to the participant (google translate):


How will this method work outside a clinical perfect trial if the slightest skepticism in the environment is enough to not make it work...? Sure psychological "think yourself healthy" seem to be more believed than other type of alternative medicine, but there will likely be som negativity still.

Studiedeltaker var kritisk; ble ekskludert
Steinkopf often also publishes in English, but here is a google translate for now:
Study participant was critical; were excluded
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Just including from the google translated letter reasoning why this was "necessary":

"You were recently included in the study. According to information from some people involved in the study, you have over time […] been active in social media with criticism of a biopsychosocial understanding of ME and of professionals who have such an understanding. You have also been critical of the study in social media. This is of course completely legitimate and it is healthy to have professional discussions.

On the other hand, motivation and a hope that the treatment will work is necessary for a psychoeducational method such as the one used in the study to be effective. Inclusion of people who have no motivation to participate in the study can create a situation that challenges the quality of the PhD work and the PhD candidate's study environment, and can affect the other participants. The consequence of this could be that the study is affected in a negative direction, and as the person responsible for research, you understand that I cannot allow that.

On the basis of possible adverse research-related consequences, I conclude as the research manager that you cannot otherwise participate in the study.''
 
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