Organization against Quackery on fashionable illnesses like CFS, ME and FM

by Johan on December 5, 2011

The first time I heard about Cees Renckens (gynaecologist and chairman of the Dutch organization against quackery (“Vereniging tegen Kwakzalverij“)) hypothesis on fashionable illnesses was when reading the announcement for the symposium “Diseases that come and go” (=Google translation) (“Van ziekten die komen en voorbij gaan“) which took place on Saturday, October 8 2011.

Klik hier voor de Nederlandse versie van dit artikel:”Vereniging tegen Kwakzalverij over modeziekten als CVS, ME en fibromyalgie”

Cees Renckens was interviewed in 2005 for Trouw, a Dutch newspaper, which resulted in the article: “ME will disappear when we stop talking about it” (=Google translation) (“ME verdwijnt als we erover ophouden“) and again on Dutch TV in October 2011 (EenVandaag): “Fashionable illnesses: physical or between the ears?” (=Google translation) (“Modeziekten: lichamelijk gebrek of tussen de oren?” ).

According to Cees Renckens’ research, published in his thesis “Medicine lead astray”  (“Dwaalwegen in de geneeskunde“) (2004), fashionable illnesses have the following characteristics:

  • the complaints are usually aggravations of everday banal complaints, worsened by the belief of having a serious illness,
  • a physical cause is never found,
  • there are active patient organizations,
  • patients consult quacks,

An active patient organization and patients who consult quacks are hallmarks of a fashionable illness? What nonsense.
Examples of fashionable illnesses include, according to Renckens, chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), repetitive strain injury (RSI), pelvic girdle pain (PGP), postnatal or postpartum depression, electro-hypersensitivity and whiplash, with the in the 19th century popular diagnosis of female hysteria as a textbook case. The advice of Renckens to doctors and to society is to ignore these illnesses after which they will disappear by themselves. This reminds my of the Belgian politician Guy Mathot who compared the huge Belgian deficit to the common cold: “It comes on and disappears of its own accord”.

female hysteria

female hysteria

During the TV-interview Cees Renckens was described as the high priest of the Dutch organization against quackery and as grand inquisitor. They seem appropriate, but in my opinion it is not something to be proud of as a skeptic. After reading the articles and watching the interview, I got the impression of an grumpy old doctor not up to speed on modern medicine and longing for the good old days when a doctor was one of the village notables and no one dared to question his authority. On the symposium he announced his departure as chairman of the Dutch organization against quackery (“Vereniging tegen Kwakzalverij”). Because of his departure and because his hypothesis seemed more like a personal opinion rather than a well researched thesis, I decided to let it pass.

However, at the end of October a new article appeared, “Research fatigue syndrome back to square one” (=Google translation) (“Onderzoek vermoeidheidssyndroom terug bij af“) by Cees Renkens and Broer Scholtens. Alas, he is no longer chairman, but he remains active as a member of the board.

What both authors demonstrate by publishing this article is their lack of knowledge on the subject.

  • They start by mentioning the negative outcome of the XMRV-research, but then quickly lump CFS together with, according to the authors, other fashionable illnesses like whiplash, pelvic girdle pain and postnatal depression.
    When you want to research the effectiveness of the flu vaccine, you cannot lump THE flu together with a bit of flu, feeling feverish, the common cold and stomach flu.
  • They cannot even spell the name of one of their so called fashionable illnesses; it is fibromyalgia and not fybromyalgia.
  • The authors use the varying prevalence rates, between 0.015 and 2.5%, to cast doubt on the diagnosis. Wrong. The widely varying prevalence rates are caused by the dozen or so different definitions. The most commonly used definition, the Fukuda criteria, has a prevalence rate between 0.2 and 0.4%. The Canadian Consensus Criteria for ME/CFS (CCC) has a prevalence rate of 0.12%. Until recently, these were the patients’ favorite criteria, but this changed after the publication of the International Consensus Criteria for ME (ICC). I belief the prevalence rate for ME (ICC) will not differ that much for those of ME/CFS (CCC). Compare that to the Oxford criteria for CFS, used in Belgium and the Netherlands for the official (biopsychosocial) research and for policy with an estimated prevalence rate between 2.3 and 2.5%. It can get worse, the promoter of the biopsychosocial model, William Reeves, tried to push his empirical definition with an estimated prevalence rate of 3.0%, but fortunately it didn’t gain traction.
  • The 5500 publications on CFS in PubMed are, strangely enough, the argument for Cees Renckens that there is nothing to be found. IMHO this is not skepticism but denialism.  What is needed before making such a statement is a meta-analysis (like the Cochrane Collaboration does) on the available research and to the best of my knowledge this hasn’t been done for CFS. It was certainly not done by Cees Renckens. Among those 5500 publication there will be studies which have never been confirmed, which contradict each other and that confirm earlier studies (immune system, brain, spinal fluid, …).
  • A lot of doctors and scientists were confronted with CFS for the first time during the XMRV-hype. Skeptics, science journalists, professors virology / molecular genetics / microbiology / neurology/ epidemiology and even researchers of some of the negative studies came to the conclusion that, although there is no link with XMRV, CFS is a very real disease. The list is impressive: Vincent Racaniello, Ian Lipkin, Ila Singh, Alan Dove, Rich Condit, John Coffin, Harvey Alter, … Vincent Racanielo (professor microbiology, virology teacher, and best known as blogger and podcaster) and Ian Lipkin (professor epidemiology, professor neurology and pathology, director of the Center for Infection and Immunity and known as the virus hunter) committed themselves to look for the cause of CFS, resp. as member of the Scientific Advisory Board of CFIDS (the largest CFS organizaton in the USA) and as one of  the leading researchers of CFI (Chronic Fatigue Initiative).
Alan Dove MECFS is real

via Twitter

Withholding facts, ignoring the opinion of experts, cherry-picking publications, spreading half (un)truths, creating confusion by lumping together several diseases and keeping it as vague as possible; these are the tactics used to mislead his readers and to keep his hypothesis afloat. Where have we heard this before? Right, these tactics are also used by homeopaths. What’s that saying? Gamekeepers make the worst poachers.

I have a lot of respect for skeptics, real skeptics who can make a case and know very well what they are talking about: Ben Goldacre, Carl Sagan, Richard Dawkins, Respectful Insolence, Science-Based Medicine, … Compared to them, Cees Renckens has been weighted and found wanting. My respect does not extend to wannabees or pseudo-skeptics.

In the series “The Enemies of ReasonRichard Dawkins expresses his concern about the rise of superstition and quackery. He is right. The fight against quackery and superstition or, maybe even better, the fight for better science education and communication is important.

There is a lot of confusion about CFS, ME, ME/CFS and fibromyalgia. Having a dozen different definitions for 1 acronym can do that to a disease, but you can’t blame the patients for this. I even would encourage skeptics to have a closer look.

  • Why does a disease know by the acronym CFS needs a dozen definitions (Holmes, Fukuda, London, Canadian consensus, International consensus, Oxford, empirical, …)?
  • The difference in prevalence between the most strict criteria and most vague criteria is 25x. What are the consequences of this?
  • Why is the official research and policy based on the most vague, save one, definition?
  • Do a meta-analysis on the 5500 publications on CFS in PubMed?
  • Expose some of the self-proclaimed CFS doctors as quacks. This one is easy.
  • Debunk the claim that GET and CBT are helpful, especially when using the more strict definitions. It has been done before. Tip: don’t trust press-releases or abstracts, read the complete articles.

Go ahead, knock yourselves out, but be prepared that it will take some time.
A nice example is the article by investigative journalist David Tuller on the blog of virologist Vincent Racaniello.

Dr. Racaniello said that when he used to question colleagues about chronic fatigue syndrome, they would argue that it was an imaginary illness. “Every time I asked someone about it, they would say it doesn’t exist, it isn’t a real disease, even as recently as the past year,” he said. “But once you start paying attention and reading papers, this looks like a chronic or hyper-immune activation. These patients have a lot of signs that their immune systems are firing almost constantly.”

This article was praised by the award-winning science writer Ed Yong: ”Science writing I’d pay to read – November 2011“.

The argumentes cited by Cees Renckens & Co to support their hypothesis on CFS, ME and fibromyalgia as fashionable illnesses are as substantial as the concentration of active ingredients in homeopathic products.
I do not know the Vereniging tegen Kwakzalverij well, but if the articles mentioned are representative for the intellectuele level and honesty of the organization, than the fight against quackery doesn’t look good in the Netherlands. The best thing the organization can do the next time they want to make a statement about ME, CFS, ME/CFS, or fibromyalgia is, IMHO, to find someone who wants to do the necessary research, apologize to patients and take some distance from Renckens & Co.

You can lead a horse to water,
but you can’t make it drink.

{ 2 comments… read them below or add one }

ana rabade December 5, 2011 at 5:14 pm

UN-BELIE-VA-BLE! Who is this guy?! How come he could get a diploma in medicine and do not understand all the proof that has been published???

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Johan December 5, 2011 at 8:36 pm

@ana
He is a women’s doctor, but frankly I think he is an anachronism – that his ideas are more suited for the 19th than for the 21st century. I am not surprised that he gets media attention. What surprises me the most is that no one in Dutch skeptical movement (dares to) questions his beliefs.

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