CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

Kalliope said:
Wyller has written a reply.

Nina Steinkopf's review of the study online in Dagens Medisin contains both falsehoods, omissions and inaccuracies. Thus, she unfortunately helps to confirm the suspicion that there are "ME activists" who are running a smearing campaign against research results they do not want. This is not in the patient's best interest.

...

All in all, this study is a small but important contribution in trying to improve the treatment options for patients with long-term fatigue. This, I believe, is welcomed by the vast majority of ME patients.

Svertekampanjer styrker ikke pasientenes interesser
google translation: Smearing campaigns doesn't strengthen the patients' interest
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Wyller includes his own spin there, but I thought that there were real problems with Steinkopf's piece and that she left herself open to criticism for this. It just shows the importance of being cautious with criticism and ensuring everything we say is accurate.

I was surprised Steinkopf's piece wasn't better when she has done so much other good stuff, and this Wyller study has so many problems with it to criticise.
 
In a blog post from David Tuller today about May 12th (shared here) he briefly mentions the study:

Life has stalled overall, but that hasn’t stopped the publication of problematic and often laughable research—such as a recent Norwegian study looking at cognitive behavior therapy combined with music therapy as a treatment for kids with “chronic fatigue” after a bout of mononucleosis/glandular fever. This paper was published by BMJ Paediatrics Open–a journal whose editorial board includes Professor Esther Crawley, the ethically and methodologically challenged Bristol University pediatrician and researcher. Just saying.
 
"Smearing campaigns doesn't strengthen the patients' interest"

It certainly does :laugh:

The participants had lower reported activity at study end, and even so this charlatan states publicly that music is an effective treatment for ME. For ME!

Its ridiculous, and almost nobody else than the patients are calling him out for it

This guy is making a living on shaming a whole patient group, its disgraceful
 
MSEsperanza said:
"All in all, this study is a small but important contribution in trying to improve the treatment options for patients with long-term fatigue."

A remarkable self-rating, especially in combination with the reply's closing sentence:

"No conflicts of interest stated."
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Yeah it's a nice self-own. When you point to some weak experiment with the scientific value of a dog turd on the sidewalk as an important contribution to something, you are effectively acknowledging that that "something" is a bunch of BS.
 
Marky said:
The participants had lower reported activity at study end, and even so this charlatan states publicly that music is an effective treatment for ME.
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Looking at the abstract and table 2, the first part of your sentence seems to be both correct and relevant, but did W. really state that the treatment was effective?

Perhaps I missed something in the translation of the reply or was it in the paper (only skimmed)?

In the reply I only find

- the statement that his group was "trying to improve the treatment options for patients with long-term fatigue" [not even ME/CFS]

- as a conclusion derived from particular, ambitiuos arithmetics (applied to an intervention group with 15 and a a control group with 21 participants)

  • "At follow-up after one year, the proportion of completely healthy young people, ie without fatigue, was about twice as high in the intervention group as in the control group. This may indicate that the treatment had positive long-term effects."
(However, I think he forgot to mention that the number of steps is still not only lower than pre-intervention but also lower than in the control group. Also, I think he forgot to mention that the reported fatigue and PEM scores decreased in both groups, indicating a reported improvement regarding symtoms of fatigue and PEM independent from group allocation, so that only the comparison between the groups, i.e the treatment effect, isn't significant with regard to the reported subjective symptoms.)

The abstract of the study paper only states that there were "tendencies towards positive effects on patients’ symptoms and recovery" that
"might justify a full-scale clinical trial".

So all very vague, confusing, full of spin, but not a statement about an actual effect I think.

(The frequency of the words "tendency, "trend" and "not significant" in the trial paper seems to me...hm...to tend to be significant. Also, how did the investigators explain the correlation of a decrease in activity measured in step counts with improved PEM in the intervention group? Did the participants in the intervention group pace better to save their energy for the music sessions? Were they allowed to reduce school attendance? See table 2 where more tendencies tend to be shown, e.g. it almost seems as if the intervention had a short term negative effect on the control group...)

Edited for clarity.
 
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@MSEsperanza Yes ur right in the publication its strongly suggested he means music has an effect on ME in the conclusion: "the increased recovery rate after 15 months in the intervention group might indicate that mental training for postinfectious CF is clinically useful.". If i remember correctly he straight out said it had an effect on norwegian radio, i can double check tomorrow.

We all know how these guys spin these things. They might be cautious in the publication, but they will reference it in other publications as if it was proven to have an effect. Knowing full well that no journalists, only the patients, actually read through the whole scam
 
Trial By Error: More on that Norwegian CBT/Music Therapy Study

https://www.virology.ws/2020/05/16/...IwYOghXofwpKLly5BTV9Qal4dLH33yxyNCVgbn5fpeTiI
After the debacle with the Lightning Process study, you would think that BMJ would have learned an important lesson—editors and peer-reviewers should scrutinize the background materials for the trials they publish. That’s the best way to prevent selective outcome reporting and ensure that findings are reported as described in the trial registration and/or protocol.
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Trial By Error: More Strangeness with that Norwegian CBT/Music Therapy Study
In a well-designed clinical trial, the protocol, the registration and the statistical analysis plan should complement and not contradict each other. Investigators spend huge amounts of time developing clinical trial protocols. These are road-maps to the project, complete with (hopefully) well thought-out and clearly defined primary and secondary outcomes. These documents have to pass muster with oversight and ethics committees and often go through multiple iterations before final approval–and funding.
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https://www.virology.ws/2020/05/18/...-with-that-norwegian-cbt-music-therapy-study/
 
Wow. Even worse than it first appeared and it looked like a dumpster fire right out the gate, though clearly long before that. Lessons learned from PACE, SMILE and the rest: cheat, cheat all you want because nothing you do actually matters, the ends justify the means. Then lie about cheating and cheat some more, everything will be covered up anyway, all the way to the editorial board and editor-in-chief, as many times as it takes. Either BMJ are horrible at their job, or very good at doing something that is very much not the job people expect they do.

I guess the thinking is that it doesn't matter because medicine holds us in contempt but even so it explains nothing about going out of their way for such minor mediocrity as this useless experiment. I get that they hate us but jeebus this is excessive.

Frankly the only thing that makes sense is that by continuing to publish fraudulent research it keeps real research and accountability at bay just a bit longer, but the only way to publish anything looking remotely convincing is to cheat all the way. It really serves no purpose otherwise but the longer this goes the worst the hit on the very credibility of medical research will be. Getting real "the cover-up is worse than crime" vibes here, the kind that speaks loudly to intent and awareness of the need to cover up.

The class-action lawsuits will be huge, huuuuuge. These people better enjoy vexatious because one day it will turn very litigious. Medicine without accountability, ethics or even basic morality is exactly as bad as it sounds.
 
Another blog post from Tuller about this trial. He also mentions the newspaper article which defended a planned trial on Lightning Process - discussed here.

Norway’s got a double whammy going on. First there’s the group of investigators that seems to have had trouble determining whether their newly published research on CBT and music therapy was an actual randomized trial or merely a feasibility study. (More on that below.) Then we have Dagbladet, a widely read tabloid, promoting a new study of the Lightning Process–with the same senior investigator as the music therapy research.

Trial by Error: Norway's Double Whammy of Fuzzy Science
 
Sly Saint said:
i was just thinking; how would people currently suffering from the effects of covid-19 react if they knew they had 'treatment' like this to look forward to(?)
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I am eagerly waiting for that moment, especially when people capable of sifting through the papers and see the glaring weakness and overall mediocrity of the research in all its technicolor glory.

:emoji_popcorn:
 
rvallee said:
I am eagerly waiting for that moment, especially when people capable of sifting through the papers and see the glaring weakness and overall mediocrity of the research in all its technicolor glory.

:emoji_popcorn:
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I do wonder if it is starting to sink in with his colleagues and bosses. And that they “force” him in the right direction, because this is what he is going to do now, the immune system and ironically, B cells.
https://prosjektbanken.forskningsradet.no/#/project/NFR/302079
 
benji said:
I do wonder if it is starting to sink in with his colleagues and bosses. And that they “force” him in the right direction, because this is what he is going to do now, the immune system and ironically, B cells.
https://prosjektbanken.forskningsradet.no/#/project/NFR/302079
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Wut? Oh FFS, that makes no sense. Why give someone who literally does not believe there is anything more than psychology funding to study immunological factors? That doesn't count anymore than giving HIV deniers funding for AIDS research would. Ugh. This looks like some BS attempt at pretending to fund real research while making sure it will be worthless.
 
benji said:
I do wonder if it is starting to sink in with his colleagues and bosses. And that they “force” him in the right direction, because this is what he is going to do now, the immune system and ironically, B cells.
https://prosjektbanken.forskningsradet.no/#/project/NFR/302079
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This is the summary of the research project on the link shared by @benji

The role of immune disturbances in the pathophysiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) remains unknown. We propose that immune responses in CFS/ME are skewed from adaptive to innate immunity promoted by functional neuroendocrine and autonomic alterations, but that this skewing is relatively unimportant for the clinical phenotype. More specifically, we propose….

1. … regarding B cell function:

a. CFS/ME is characterised by attenuated B cell differentiation and stimulation responses.

b. Functional alterations of B cells are driven by autonomic/neuroendocrine alterations.

c. Functional alterations of B cells do not cause clinical symptoms and functional disability.

2. … regarding inflammation:

a. CFS/ME is characterised by general low-grade inflammation.

b. Inflammation enhancement is driven by autonomic/neuroendocrine alterations.

c. Inflammation does not cause clinical symptoms and functional disability.
 
dave30th said:
Are 1c and 2c supposed to be the null hypotheses? Or...?
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They're trying to prove that immune dysregulations in ME are not clinically relevant. I cannot understand why they would want to identify things that don't matter? Is their goal to disprove that ME is organic, but is instead psychological/somatic?
The role of immune disturbances in the pathophysiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) remains unknown. We propose that immune responses in CFS/ME are skewed from adaptive to innate immunity promoted by functional neuroendocrine and autonomic alterations, but that this skewing is relatively unimportant for the clinical phenotype.
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???
 
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