Review Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review, 2024, Vink & Vink-Niese

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Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review

Abstract

In this article, we analyzed the systematic review by Kuut et al. into the efficacy of cognitive behavioral therapy (CBT) for my algicencephalomyelitis/chronic fatigue syndrome (ME/CFS), a disease that predominantly affects women, and the eight trials in it.

We found many issues with the studies in the review, but also with the review itself.

For example, the systematic review by Kuut et al. included a researcher who was involved in seven of the eight studies in their review, and another one who was involved in five of them. Moreover, at least one of them was involved in every study in the review.

On top of that, the three professors who were involved in the systematic review, have all built their career on the CB model and the reversibility of ME/ CFS through CBT and GET and two of the systematic reviewers have a potential financial conflict of interest.

Yet they failed to inform the readers about these conflicts of interest.

Conducting a review in this manner and not informing the readers, under mines the credibility of a systematic review and its conclusion.

Regarding outcome differences between treatment and control group, it’s highly likely that the combination of non-blinded trials, subjective outcomes and poorly chosen control groups, alone or together with response shift bias and/or patients filling in questionnaires in a manner to please the investigators, allegiance bias, small study effect bias and other forms of bias, produced the appearance of positive effects, despite the lack of any substantial benefit to the patients, leading to the erroneous inference of efficacy in its absence.

That CBT is not an effective treatment is highlighted by the fact that patients remained severely disabled after treatment with it. The absence of objective improvement as shown by the actometer, employment status and objective cognitive measures, confirms the inefficacy of CBT for ME/CFS.

The systematic review did not report on safety but research by the Oxford Brookes University shows that CBT, which contains an element of graded exercise therapy, is harmful for many patients.

Finally, our reanalysis highlights the fact that researchers should not mark their own homework.

Keywords:
CBT; CFS; Chronic Fatigue Syndrome; Cognitive Behavior Therapy; Myalgic Encephalomyelitis; NICE.

 

Still amazing that Theranos is held up as some big example of major corporate failure hyping a technology that did not exist when so much fake evidence exists within health care itself, official and promoted by institutions that should know better, that basically amount to the exact same thing except for the fact that Theranos' scam was exposed because investors bailed when they had enough. And most of them got their money back.

Meanwhile this stuff is basically the equivalent of a Theranos-sponsored study of their own tech, mainly at one of their private labs, involving senior company staff in multiple studies and others literally writing reviews of their own studies of their own tech, published in a friendly corporate journal that they invested in. And it's beloved. Basically hailed as the second coming of doctor Jesus, the stuff that is supposed to be the future of medicine.

This went so much further than this. They wrote the course and its curriculum. Wrote the exam. Filled the exact. Graded their own exam. Then evaluated their own grading of their own filling of their own exam, which they completely made up. It's completely excessive levels of fraud.

And it won't change a damn thing. Because although high-risk rich investors are protected from fraud, the public is not protected by blatant fraud committed by the systems that are supposed to safeguard against fraud. It's all just a damn cozy church of fake nonsense.

Still, it has to be said. In writing. Again.

 

I have yet to see any proof that CBT physically changes the body.

Changing the way people think might be possible if a CBT therapist was particularly well trained in brainwashing and had spent many sessions on "fixing" the patient, but I don't believe that it will repair physical damage whether at a macro level or a micro level. And if a patient has undiscovered physical damage, getting them back to living and working like a healthy person will probably just exacerbate the patient's health problems.

CBT is (allegedly) believed in to such an extent by some sectors of the medical profession and the government that people have been deemed to be "cured" after just one session, or in some cases after zero sessions (or so I read on CBTwatch and also). The referral to CBT, and answering a questionnaire, has sometimes been deemed to be enough. The collection of statistics related to CBT is simply dishonest.

 

I don’t think there is any chance it even really changes the mind

it’s just programming people to say the right things and ‘follow orders’ ie brainwashing.

that doesn’t make it healthy. And the horrific thing about the CBT re-education is that what they decide to plonk into that enforced ‘new’ isn’t something people spend years agonising over getting right - just their own assumptions of what they think is the best way to live based on themselves and their own prejudice

even if you had a work course on these things you’d expect some references somewhere on the advice on how to eat (and we know what nutrition 'advice' has turned out to be over the years with it flip-flopping on what is best and not really being individual etc) or when to get up or why you are a bad person for napping (they never tested that causes people to be worse rather than better before 'banning it'?)

these people don’t realise that no one ever even attempted to test these directly - best they did was use coercive conditions to ‘test’ if those forced thru CBT ‘said they were better’ not any events of that working or who they were and the perceived threats and bullying are so leaned into by the area instead of controlled it’s I think something that should count as fraud on that basis. You can’t have people fearing the consequences of being honest on the main measure and then only ever using that measure - no objective measures ever.

And almost even worse is the social coercion used - almost all of us at some point would be happier just to be 'acceptable' or 'accepted' even if our health is going down and soon that 'masking/aping' will be impossible, even if it is hurting and hard now. Just not getting that continual gyp and feeling we have some space in the world for a year or two is huge, but then everything falls apart because you are even more unwell and in an even worse position. And at the same time this incorrect/misinformation makes people less accepting of it even being an illness.

 

Except that brainwashing doesn't work. Militaries have been trying that for millennia and attempts have pretty much stopped because they don't lead anywhere. The involvement of a professional discipline of psychology has not made any difference other than in making it appear so. It only appears to work in about the same circumstances why some people fall down conspiracy theory rabbit holes or cults.

Which a lot of people do, but that's not really brainwashing either. It's chaotic and is more about convincing people that nothing is real, rather than that something in particular is. Or is about following one person's lead, without any consistency as to what they say.

Which is what CBT is about. For sure it can change how people answer on questionnaires with ambiguous questions and answers. That much is true. But it almost never works in real life. Programs to stop smoking, quit drugs, lose weight and so on have all tried that. And all they accomplish is getting people to report contrary to what they actually do, as long as it can't be measured. Which is what this fake empire is all about, built on the illusion of effectiveness, by explicitly trying to distort how people report that effectiveness.

Sometimes you can actually fake it until you make it. But you have to fake something real.

 

I might be cynical, but I don’t believe CBT helps at all. Not even in coping with the disease.

I did CBT for 4 years when I first got ill in 2011. I did one on one therapy with a psychologist, I did group therapy, I did a course on stress management and one on mindfulness.

I had a brilliant psychologist and I believed whole-heartedly in the process. I really enjoyed learning and doing all the exercises.

Guess what? All that work and effort did nothing for my ME/CFS (which at the time was incorrectly diagnosed as psychosomatic burn out).

I am living proof that CBT does not cure ME/CFS. I believed in CBT, I enjoyed it, I gave it my all, and yet I am now bedbound.

I wonder what my life would look like today, if instead of 4 years of CBT, I had done 4 years in a pacing school at the beginning of my illness.

 

I don't think it helps either. In the time I was doing it, it did me no good whatsoever.

In the end I fixed my own anxiety and depression with iron supplements. CBT and SSRIs never did me any good either. Doctors were trying to fix the wrong problem with the wrong prescriptions, and they kept it up for years!

 

Sasly, I think all ME/CFS patients suffer some trauma due to disbelief and gaslighting by doctors. I remember vividly during the first years of my illness, waiting at the doctor’s office and shaking because I was so stressed by the fact that, once again, I’d have to talk about my symptoms, knowing full well I would not be believed. I would make up schemes in my head about what to say and how to say it, in order not to appear weak or attention-seeking.

I still get enormously stressed each time I interact with anyone from the medical profession.

 

From ME Research UK Facebook page:

A paper by independent researchers (someone who conducts research outside academia, and is not associated with an academic institution), Mark Vink – also a person with ME/CFS, and Alexandra Vink-Niese, has confirmed the conclusion by NICE that CBT is not an effective treatment for ME/CFS.

In the paper, the authors re-examine an existing systematic review – a specific type of study that uses repeatable methods to search for, select, and combine all available evidence to answer a specific research question, by Kuut and colleagues on the efficacy of CBT for ME/CFS which found that: “CBT for ME/CFS can lead to significant reductions of fatigue, functional impairment, and physical limitations”.

In the reanalysis of the review by Kuut and colleagues, the authors not only identify issues with the systematic review itself but also with the eight studies included in the review.

Importantly, Vink and Vink-Niese state that “conducting a review in this manner and not informing the readers, undermines the credibility of a systematic review and its conclusion”.

Read more: https://bit.ly/3O4qRt4