By David Tuller, DrPH
In a recent decision, the Advertising Code Foundation in the Netherlands has criticized as “misleading” a statement on the website of the Knowledge Center for Chronic Fatigue (NKCV) touting its treatment approach as “not harmful.” The decision is something of a slap at the NKCV and its co-leader, Professor Hans Knoop, a psychologist and a member of the Dutch wing of the CBT/GET ideological brigades.
Professor Knoop is a long-time colleague of the authors of the now-discredited PACE trial. In a 2011 Lancet commentary accompanying the publication of the PACE results, he and a colleague declared that many patients had met “a strict criterion for recovery”—a ridiculous and untrue claim. In a recent post, I critiqued a recent study from Professor Knoop and colleagues that investigated CBT for long Covid. The study was full of the usual flaws marring his brand of research and yielded predictably positive results in its subjective outcomes that were essentially meaningless.
The Advertising Code Foundation (Stichting Reclame Code, or SRC) describes itself this way: “The Advertising Code Foundation (SRC) has been the body in the field of advertising self-regulation for over 55 years. The SRC promotes responsible advertising with the aim of ensuring the reliability and credibility of advertising.”
The SRC investigates complaints from consumers, commercial interests, and others about advertising they believe is deceptive or otherwise problematic. After a decision is rendered, the SRC monitors whether the advertiser has complied with the recommendation. However, compliance is voluntary.
In this case, the agency received a complaint about information on NKCV’s website regarding its psycho-behavioral treatment approach, which includes elements of both CBT and GET. The decision, dated May 3rd, described the complaint: “It concerns an expression in the frequently asked questions about treatment for CVS (chronic fatigue syndrome) on the website of the Dutch Knowledge Center for Chronic Fatigue (NKCV). The statement reads: ‘Can the treatment be harmful? The treatment is not harmful. We have investigated this. Here [hyperlink] you will find the research.’”
The whole report is well worth a read. It includes a summary of the complainant’s concerns, followed by NKCV’s response, and then rebuttals from each side. The complainant, who remains unidentified, had the better side of the argument, at least according to the decision.
Of apparent significance was a 2022 paper from Vink and Vink-Niese, “Is It Useful to Question the Recovery Behavior of Patients with ME/CFS or Long COVID?” This analysis was cited both by the complainant and by the chairperson in the final decision. The latter quoted Vink and Vink’s finding that their review “highlights the fact that both treatments [CBT and GET] are unsafe for patients with ME/CFS.”
The SRC found, first of all, that the NKCV website falls under the definition of “advertising,” as outlined in the Dutch Advertising Code. The agency further found that the claim of safety violated the code’s article #7 in, which states the following:
“Advertising must not be unfair. Advertising is unfair when it conflicts with the requirements of professional diligence and substantially distorts or is likely to distort the economic behavior of the average consumer it reaches or is directed to in relation to the product. Deceptive advertising and aggressive advertising are in any case unfair.”
So was the ad in question “unfair”? After weighing the submissions from both parties, the report determined that it was:
“It must be concluded that (the safety of) the treatment of CFS with CBT is under scientific discussion. This does not mean that NKCV may not advertise the CBT treatments it offers on its website at all. However, in view of the above-mentioned difference of opinion with regard to the existence of scientific evidence for its safety, the necessary care and restraint should be exercised when promoting it to ensure that the average consumer is presented with a sufficiently nuanced picture. information about (the possibilities of) the treatment of CFS with CBT…The contested statement does not meet that requirement. After all, it is stated without any reservation ‘The treatment is not harmful’…
“Due to the certainty of the statement, which lacks any nuance, the average consumer is given an incorrect impression about the risks and the results that can be expected from the touted treatment of CFS…Since this consumer may be led to take a decision about a transaction – treatment with CBT by NKCV – that he would not have taken otherwise, the statement is misleading and therefore unfair within the meaning of article 7 NRC.”
As of today, the “frequently asked questions” page of the NKCV’s website still includes the following “misleading” statement: “The treatment is not harmful.”
Self-regulation, hmm.
If the statement still hasn’t been removed then I suppose one possibility is that the SRC’s Compliance department is yet to check (-https://www.reclamecode.nl/english/ ) . Considering the healthcare context, how long would be reasonable to wait before concluding that self-regulation has failed to protect vulnerable people?
This talk by philosopher and bioethicist Diane O’Leary, and she speaks of CBT briefly in this talk and well as ME/CFS and long COVID, indicates that indeed the way medicine practices in relation to dualistic concepts, can be harmful to people. To claim that CBT, personally speaking, has no ethical issues hence any potential adverse effects, is ludicrous. Searching Pubmed with the heading and subheading combination of Cognitive Behavioral Therapy/ethics (there is no subheading in Pubmed for adverse effects interestingly) currently retrieves 29 references.
At any rate, for anyone interested in the talk:
“Doctors and dualism”
https://www.abc.net.au/radionational/programs/philosopherszone/doctors-and-dualism/14004928
What I find disappointing is TWIV’s own podcast ‘Clinical Update’ Dr. Daniel Griffin read that bogus study out to thousands of potential doctors with Long Covid patients, who will now assume CBT is safe for Long Covid, that’s malpractice on a massive scale. What makes this worse is it’s already known that the CDC and Nice both abandoned CBT as a treatment for ME/CFS.
It’s also known that 50% of long Covid patients actually fit that strict criteria of the Canadian Consensus Criteria for ME/CFS. Meaning at least half the patients that will be treated by doctors misled by this study will have their health put at risk.
I explained this in an email to Dr Griffin (who actually is a genuine caring person, so I feel upset I have to write this) but no reply from him. Nor any mention of it on the TWIV podcast.
Now the same authors of that study are in hot water for false advertising!
Dr Griffen if you are reading this please note that CBT is not a treatment suitable for post viral illnesses. It is gaslighting patients. You have to retract what you read out or at least mention this latest issue with the Dutch advertising standards authority. Otherwise how do we know what you read on your podcast is true or not?
It’s like history just keeps repeating on this problem of believing lying psychiatrists… and not surprising it’s the same ones as in the past debunked fraudulent studies.
From Dr. Mike Scott, CBT Watch:
“NHS Talking Therapies’ Claim to Provide CBT”
http://www.cbtwatch.com/nhs-talking-therapies-claim-to-provide-cbt/
Medical gaslighting in the multiple sclerosis community where an MRI might not show any recent inflammatory results but the patient is becoming worse. . Dr. Gavin Giovannini explains in his blog:
https://gavingiovannoni.substack.com/p/medical-gaslighting#details
Further to the above and I think this relates to ME/CFS and FND is some respects and this is an important aspect to understand with any autoimmune related disease/condition/syndrome etd.:
“A normal MRI of the brain and spinal cord is compatible with progressive MS”
Source: https://www.msard-journal.com/article/S2211-0348(20)30795-1/fulltext
Good point mike.
So if neuros arent up to date then we can say fnd is belief system and the whole construct is rubbish and should be scraped
I think i am one of these people