I see Miek Jong mentions the Virology Blog post. But she agrees with this clinical trial being done also. Even though it is designed to get positive findings.
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Lightning Process study in Norway - Given Ethics Approval February 2022
- Thread starter Kalliope
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I see Miek Jong mentions the Virology Blog post. But she agrees with this clinical trial being done also. Even though it is designed to get positive findings.
Miek Jong might not have read the study protocol that was sent to the different muncipalities, I don't see why she would doubt that the researchers involved would do a good job and go looking for it.
rvallee
Senior Member (Voting Rights)
Flottorp is completely incoherent. Almost reads like drunken ramblings. This wouldn't even be an acceptable quality standard to run an ice cream shop. These people are complete amateurs, I have no idea how this is considered serious and credible.
Snowdrop
Senior Member (Voting Rights)
Flottorp doesn't seem to be aware that people reporting benefits is not at all the same category of consideration as people reporting harm.
People will by nature be inclined to be positive even more so when they have laid out money, invested time and then the 'treatment' itself creates an environment of positivity toward not having symptoms / ignoring symptoms. So if harms are reported they qualify as different in nature due to the tendency toward bias of positive reports even when it's possible that there are none objectively.
Therefore given the huge level of bias in reporting from clients it has to be necessary to subject LP to more rigourous research since there are reports of harm.
She then has the temerity to suggest that since there is no research regarding harms that this means there should be no warnings of treatment harm. Most of the clinical research has been from the BPS people who have avoided at all costs any attempt to measure harms properly and objectively.
And just another random thought. Flottorp mentions drug therapy and how ill people might relapse and need further drug treatments. Uh, the LP is a type of therapy that is taught and 'done' by the patient. Shouldn't the person then be able to sustain recovered health by simply continuing to use the training they've been given. Not at all the same thing as drug therapy. One doesn't visualise a drug and act as if it's been delivered.
So I get that she's suggesting that people may need to be 'reindoctrinated' (although she may not use that word for it) but why? How is it not sufficient for the person to continue with the treatment as it's been taught without requiring repeated coaching
People will by nature be inclined to be positive even more so when they have laid out money, invested time and then the 'treatment' itself creates an environment of positivity toward not having symptoms / ignoring symptoms. So if harms are reported they qualify as different in nature due to the tendency toward bias of positive reports even when it's possible that there are none objectively.
Therefore given the huge level of bias in reporting from clients it has to be necessary to subject LP to more rigourous research since there are reports of harm.
She then has the temerity to suggest that since there is no research regarding harms that this means there should be no warnings of treatment harm. Most of the clinical research has been from the BPS people who have avoided at all costs any attempt to measure harms properly and objectively.
And just another random thought. Flottorp mentions drug therapy and how ill people might relapse and need further drug treatments. Uh, the LP is a type of therapy that is taught and 'done' by the patient. Shouldn't the person then be able to sustain recovered health by simply continuing to use the training they've been given. Not at all the same thing as drug therapy. One doesn't visualise a drug and act as if it's been delivered.
So I get that she's suggesting that people may need to be 'reindoctrinated' (although she may not use that word for it) but why? How is it not sufficient for the person to continue with the treatment as it's been taught without requiring repeated coaching
Jonathan Edwards
Senior Member (Voting Rights)
I have a comment up now.
https://edzardernst.com/2020/06/the...-unproven-hyped-and-expensive/#comment-123663
rvallee
Senior Member (Voting Rights)
I ask myself that question routinely and there is frankly no good reason other than people not wanting any bad news about what they are doing, basically doing the equivalent of creative (aka criminal) accounting of just counting income and ignoring expenses.
Which is actually a Simpsons gag, where the kids marvel at the fact that principal Skinner must be a millionaire since he's been making $25K per year for 40 years. This is the level of mediocrity we are dealing with. Except with whole human lives.
I added the following comment to Ernst's blog to follow JE's:
Indeed, CBT for ME/CFS is just the Lightning Process with less slick marketing. And studies of the impact of CBT on ME/CFS suffer from many of the same problems, with subjective outcomes combined with unblinded treatments and cognitive manipulation. The study “Long-term Effect of Cognitive Behavioural Therapy and Doxycycline Treatment for Patients With Q Fever Fatigue Syndrome: One-year Follow-Up of the Qure Study” by Raijmakers et al 2019 is a good one to look at.
A group of people with QFS (ME/CFS following Q fever) given CBT and a control QFS group started out with close to the same reported fatigue scores. After treatment, the CBT group had somewhat improved reported fatigue, with the mean being slightly below the level the authors deemed to be severe fatigue. One year after treatment, the CBT group and the control group had fatigue scores that could not be differentiated statistically (with the control group mean actually being better than that of the CBT group). Rather than seeing this result as evidence that training people to answer fatigue questionnaires more positively has no impact on the course of the illness, the authors interpreted the result as meaning that more research is needed to work out how to make the transient reported improvement last longer.
What the paper does not report is the psychological impact of telling people who remain unwell after Q fever (and their families) that they could be better if they just thought more positively and ignored their symptoms. Not only are the people in the CBT group just as fatigued one year after treatment as those who received no treatment, they may feel shame for not having been morally strong enough to become well. It’s a treatment that adds insult to injury.
The field of psychology is ripe for scrutiny by people with a skeptical outlook; the line between pseudoscience and psychology is unfortunately often very thin.
A group of people with QFS (ME/CFS following Q fever) given CBT and a control QFS group started out with close to the same reported fatigue scores. After treatment, the CBT group had somewhat improved reported fatigue, with the mean being slightly below the level the authors deemed to be severe fatigue. One year after treatment, the CBT group and the control group had fatigue scores that could not be differentiated statistically (with the control group mean actually being better than that of the CBT group). Rather than seeing this result as evidence that training people to answer fatigue questionnaires more positively has no impact on the course of the illness, the authors interpreted the result as meaning that more research is needed to work out how to make the transient reported improvement last longer.
What the paper does not report is the psychological impact of telling people who remain unwell after Q fever (and their families) that they could be better if they just thought more positively and ignored their symptoms. Not only are the people in the CBT group just as fatigued one year after treatment as those who received no treatment, they may feel shame for not having been morally strong enough to become well. It’s a treatment that adds insult to injury.
The field of psychology is ripe for scrutiny by people with a skeptical outlook; the line between pseudoscience and psychology is unfortunately often very thin.
benji
Senior Member (Voting Rights)
Interesting point.
One of the reasons might be that not so many psychologists know what LP is all about. That may implicate that it is wise to get out in the open what LP really is.
Another is that some of the LP proponents are psychologists too. They’ve been on a course, and say that LP should work. I have no doubt that it is not a coincidence that one of the foremost of them is at NTNU housing the main supervisor of the study.
benji
Senior Member (Voting Rights)
Also, here is Miek Jong final comment to Flottorp:
“In case you want to further discuss this matter between the two of us or our institutes, please let me know, and accordingly we can plan a skype meeting.”
What does Flottorp do? Some weeks later, she attac NAFKAM in the biggest tabloid newspaper (!)
Not very scientific, although she asks for scientific discussion. From the answer by Miek Jong
“As discussed during our pleasant skype meeting on Monday 20 April, we both agree that the ongoing debate in Norway on the effectiveness and safety of LP should be a scientific discussion, and not based on emotional, political or economic arguments.”
People should start to notice this.
“In case you want to further discuss this matter between the two of us or our institutes, please let me know, and accordingly we can plan a skype meeting.”
What does Flottorp do? Some weeks later, she attac NAFKAM in the biggest tabloid newspaper (!)
Not very scientific, although she asks for scientific discussion. From the answer by Miek Jong
“As discussed during our pleasant skype meeting on Monday 20 April, we both agree that the ongoing debate in Norway on the effectiveness and safety of LP should be a scientific discussion, and not based on emotional, political or economic arguments.”
People should start to notice this.
Kalliope
Senior Member (Voting Rights)
The Norwegian ME Association has asked the Norwegian Institute of Public Health (FHI) a few questions. Among other about the institute's support of Live Landmarks LP study.
They received an answer 1st of April written by the director herself, Camilla Stoltenberg and Centre Director Per Magnus. This response was available via an FOI request.
We have supported the project of Live Landmark because it is a study that can provide important answers on the use of a form of alternative treatment. We believe that all new treatments to be used in the Norwegian health service should have a good scientific basis. This basis must include costs, possible side effects and, not least, good documentation of the clinical effect. In the absence of such documentation it is not possible to assess the treatment. When one does not know the causes or good treatment for a disease, it is important to test many hypotheses, and there is reason to be critical of anyone who has strong opinions in advance, whether this is the classification of the disease or opinions about the nature of the disease.
Attached is the letter in full from FHI (in Norwegian) and a google translation into English (with some minor adjustments by me for clarity)
They received an answer 1st of April written by the director herself, Camilla Stoltenberg and Centre Director Per Magnus. This response was available via an FOI request.
We have supported the project of Live Landmark because it is a study that can provide important answers on the use of a form of alternative treatment. We believe that all new treatments to be used in the Norwegian health service should have a good scientific basis. This basis must include costs, possible side effects and, not least, good documentation of the clinical effect. In the absence of such documentation it is not possible to assess the treatment. When one does not know the causes or good treatment for a disease, it is important to test many hypotheses, and there is reason to be critical of anyone who has strong opinions in advance, whether this is the classification of the disease or opinions about the nature of the disease.
Attached is the letter in full from FHI (in Norwegian) and a google translation into English (with some minor adjustments by me for clarity)
Kalliope
Senior Member (Voting Rights)
Chairman of the Norwegian ME Association, Bjørn K. Getz Wold wrote a good response to Dagbladet and their recent coverage about the "ME war". A pity they didn't want to publish it, but it's available on the association's website.
Contrary to Dagbladet, we believe it is high time that ME sufferers are listened to, treated with respect, met with research that maintains minimum research quality, is offered the relief of symptoms and treatment that works instead of treatment that does not help and which some get sicker from. But Dagbladet presents a war in which the poor doctors, scientists and health professionals who "know best" are attacked by a group of sick people who turn out to be "activists" and who have an "aggressive patient association" with them.
Krigsretorikk går ut over de "sivile" - pasientene
google translate: War rhetoric hurts the "civilian" patients
Contrary to Dagbladet, we believe it is high time that ME sufferers are listened to, treated with respect, met with research that maintains minimum research quality, is offered the relief of symptoms and treatment that works instead of treatment that does not help and which some get sicker from. But Dagbladet presents a war in which the poor doctors, scientists and health professionals who "know best" are attacked by a group of sick people who turn out to be "activists" and who have an "aggressive patient association" with them.
Krigsretorikk går ut over de "sivile" - pasientene
google translate: War rhetoric hurts the "civilian" patients
rvallee
Senior Member (Voting Rights)
Ridiculous response. This study in its current form offers nothing of value and medical authorities should not be in the business of funding random alternative treatments that exist in the form of commercial products, especially ones that make blatantly unscientific false claims based on woo like Tarot cards and gaslighting.
I do love how obvious absurdities routinely find their ways into those arguments, such as talking about testing hypotheses in pragmatic trials, a nonsensical argument. These people do not take their responsibilities seriously and barely muster the energy to give convincing BS arguments.
You'd think an organization lead by clowns would make more convincing attempts at being funny.
rvallee
Senior Member (Voting Rights)
It's weird, I didn't really catch on just how incredibly weird and frankly insane the war rhetoric is in the first place but this is a good point to raise. If there is any war analogy to be used it's one of a hostile occupying force engaged in oppression of a vulnerable population, a completely unequal power imbalance in which we literally can't even mount any defense other than using the law and procedure, which generally sides against us anyway.
And there are actual doctors, scientists and professionals who actually know what they're doing, but they are denied resources and support because this hostile occupying force has taken over and dominated the field into anarchy and leading to our destruction. These people are not on our side, they are in fact a mortal threat to us.
Such a weird dystopian nightmare.
Kalliope
Senior Member (Voting Rights)
Tuller finally received a response from Dagbladet, and sent quite some reply!
https://www.virology.ws/2020/06/03/...Ts6BqhDeU__99XNcqTA3n3m41l4M2SO7GFFvwOxcktDvs
Trial by Error: A response from Dagbladet
Your reporter and your news organization appear to have launched this project with a built-in bias. The decision to present such a one-sided portrait of the dispute represents an alarming abrogation of journalistic responsibility. Shame on you.
https://www.virology.ws/2020/06/03/...Ts6BqhDeU__99XNcqTA3n3m41l4M2SO7GFFvwOxcktDvs
Trial by Error: A response from Dagbladet
Your reporter and your news organization appear to have launched this project with a built-in bias. The decision to present such a one-sided portrait of the dispute represents an alarming abrogation of journalistic responsibility. Shame on you.
Thanks for the translation, Kalliope, of the Norwegian Institute of Public Health (FHI)'s defence of their support for the Lightning Process study.
But even in English, the reply makes no sense to me. I'm shaking my head in disbelief. It is very frustrating to deal with people who think like this.
Kalliope
Senior Member (Voting Rights)
The editor from Dagbladet writes:
But of course, we fully understand that your academic background is relevant regarding this topic, so we have updated the key information about your academic credentials.
But as for now, there doesn't seem to have been any changes/updates of the article. Here are the sections mentioning Tuller:
1. 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.
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.
2. Dagbladet kan avsløre at blogger og journalist David Tuller har mottatt pengestøtte fra den norske ME-foreningen, som lenge har vært tydelige på at de mener det må forskes på mulige fysiologiske årsaker og behandlinger av ME, ikke på mulige psykologiske.
Translation: Dagbladet can reveal that blogger and journalist David Tuller has received financial support from the Norwegian ME Association, who for a long time have been clear that they think research must be done into possible physiological, not possible psychological, causes and treatments of ME
Kalliope
Senior Member (Voting Rights)
Dagbladet has published an opinion piece from Recovery Norge in support of the LP study.
We believe it is worrying that individuals and organizations are trying to stop and influence research and that researchers who are not perceived to contribute to a "right view" are being worked against. ME organizations internationally and in Norway are unilaterally negative to research on anything connected to something "psychological".
We see a constant spread of fear and discouragement of such strategies. This can hinder the work of researchers, affect recruitment for studies, and affect results. If trust, expectation, hope and motivation are important, very negative publicity can act as a nocebo effect (the opposite of placebo), and aggravate bodily reactions. Our members have often experienced how fear of aggravation is central to the health problem and how important it is to dare to try.
...
We fear that the three-day intervention Dagbladet mentions will be subject to systematic countermeasures. The integrity of the researchers and the project must be supported.
google translation: Constant spread of fear
I'm sad this gets printed and not the answer from ME-foreningen.
I'm not sure about the "trust, expectation, hope and motivation" part. I'm sure many patients trusted healthcare in the beginning of their illness/before their illness, expected/hoped to get well and have many reasons that motivate them to get better. I know I did/do!
Kalliope
Senior Member (Voting Rights)
Agree.
It's as if they believe that it's people who are sceptical of LP that are responsible for it not working for everyone.