A self-test for CFS/ME?

by Johan on September 11, 2012

In June 2009, Prof. dr. Kenny De Meirleir and Chris Roelant announced to the world a self-test for CFS, based on the amount of H2S in the urine of patients. Fast forward to February 2012, almost 3 years later, and a paper on a self-test for CFS/ME was published in the Journal of Medical Laboratory and Diagnosis Vol. 3(1): “Self-test monitoring of the Th1/Th2 balance in health and disease with special emphasis on chronic fatigue syndrome/myalgic encephalomyelitis” by Chris Roelant and Kenny De Meirleir. At last.

Klik hier voor de Nederlandse versie van dit artikel:”Een zelftest voor CVS/ME?”

Hold on, this is about a different test. The first test was based on the amount of H2S (a foul smelling, poisonous gas) and the second one on the balance of Th1/Th2 (T-helper cells, white blood cells) in the urine of patients. What happened to the thousands of patients (including me) who took the first test repeatedly and paid for them? Was it all for nothing? A waste of money? And what about this new test? Is it any better? I decided to have a good look at this paper:

      1. A self test?
        To determine whether you have CFS/ME, ulcerative colitis (an inflammatory bowel disease), or autism via this test you will need a spectrophotometer. So much for the self-testing. (See table 1 on page 4 in the article)
      2. For CFS/ME?
        This test can be used for “the detection, diagnosis and/or monitoring of inflammatory, infectious and/or chronic immune diseases, such as infectious diseases (including viral, bacterial, prion-related infectious disease), cancers, mental disorders, autism, immunological disorders (including auto-immune disease, rheumatoid arthritis and the like), nervous system disorders, disorders of the gut, defective wound healing processes, poisoning (with heavy metals, pesticides and the like), unexplained syndromes, age-related processes, biological clock related processes and diseases with unknown etiology such as fibromyalgia, CFS/ME and the like.”
        So, if you test positive you either are pregnant, are jet lagged, have aged, have CFS/ME, have autism, have a mental disorder, … or have an unknown disease! Isn’t a test that proves everything, a test that proves nothing?
      3. What is CFS/ME?
        There are a couple of definitions for ME, there is one for ME/CFS, and there a dozen or so for CFS. The most used criteria are the Fukuda criteria for CFS. De Meirleir is co-author of the Canadian Consensus Criteria for ME/CFS and co-author of the International Consensus Criteria for ME. Why would De Meirleir, of all people, use the undefined CFS/ME which is mostly used by psychiatrists?
      4. Reuse of photos from previous test
        Below you will find the photos of the first (H2S) (from leaflet [pdf]) and second (Th1/Th2) (from article) test. As you will probably notice, the photos that are used are identical. Notice the label on the container, the position of the second recipient and the position of the fingers, the shadows and the creases in the gloves. This means that the authors could not be bothered to take new photos for their publication in the Journal of Medical Laboratory and Diagnosis. According to the article the discolouration is caused by the amount of Th2 in the urine, but the photos show discolouration caused by the amount of H2S in the urine. Don’t get me wrong, I am an environmentalist and I am all for reuse, but this is inappropriate.
Comparison Th1/Th2 and H2S tests

Comparison Th1/Th2 and H2S tests

      1. Journal of Medical Laboratory and Diagnosis
        I already had quite some misgivings about this paper and then I had a look at the journal. It is a very young journal; in 2010, 2 issues were published totalling 4 papers, in 2011, 5 issues were published totalling 10 articles, and in 2012, only 1 issue has been published so far. The headquarters are in Nigeria and Kenya. The first things that come to mind with Kenya are safaris and with Nigeria, oil-spills and scams. I was unable to find an impact factor for this journal, but lucky for me, Laika, Alan Dove and Jeffrey Beall had already written about journals like this one and their publishers. They are called predatory, open-access publishers. The description for Academic Journals, publisher of the Journal of Medical Laboratory and Diagnosis, by Jeffrey Beall:

        This bogus, Nigeria-based publisher has been around for years, and continues to increase its journal fleet of over one hundred titles from all areas of study. Seeking legitimacy, it falsely associates itself with authentic organisations and conferences.

I do not understand why the authors went to the trouble of getting this paper published. The test only proves that there is a Th1/Th2 imbalance, whatever that means. How come 2 experienced researchers (even if you exclude ME/CFS), co-founders of companies, and patent-holders submitted a paper to a bogus journal? Were they swindled out of $650, the price to get an article published in the journal? Were they in need of a publication to secure further funding or support a patent application and would no other journal accept their paper?
In my opinion this paper should not be added to the list of 5000 biomedical papers which prove that this is a physical disease.

According to Kenny De Meirleir a positive H2S test proved that you didn’t have a mental disorder. However, testing positive with the new Th1/Th2 test might prove you have exactly that.

PS: The list with 5000 papers that prove that this a physical disease is an urban myth, but you already knew that. Right?

The scientist is not a person who gives the right answers,
he’s one who asks the right questions.
Claude Lévi-Strauss

Sources

{ 4 comments… read them below or add one }

Tony Mach September 11, 2012 at 6:46 pm

I had two observations about this paper:

1. The numbers on page 4 of this test look a bit “rounded”. I find it doubtful that a real life test, for a real life process, with real life patients, would produce these numbers.

2. How was Th1/Th2 status determined for these patients? I mean, by what other test besides the deMeirleir “test”? How was this correlation between the test and the Th1/Th2 status ascertained?

Reply

Johan September 11, 2012 at 7:57 pm

I have provided a link to the article. I skimmed the technical part, looked at the table (noticed that it would be impossible to distinguish between certain diseases without a spectrophotometer), noticed the list with diseases (ROFL) and noticed the photos (*facepalm*). That was my angle for this article.

However, I have reread it with your questions in mind. I could not find any mention of a test they used to verify the Th1/Th2 status of patients. I also could not find any mention on how they diagnosed patients or monitored disease progression or the effect of treatments. So, my conclusion is that the use of this test for detecting, diagnosing, and/or monitoring of diseases is purely hypothetical.

Reply

Tony Mach September 11, 2012 at 6:49 pm

And what exactly does this test measure anyhow?

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Jacqueline September 17, 2012 at 10:01 pm

Good work Johan. Kudos!

This is really a very low quality scientific paper in all respects. As a matter of fact I wouldn’t call it scientific at all. The methods are poor, very poor indeed. It is not known what is being tested against what (like Tony says). There is no way to determine the specificity/ sensitivity/ accuracy/ predictive value of the test for defining whether someone has CFS and even less so for monitoring the disease (as the authors suggest: in this case one would follow the patients after therapy and blindly compare the disease characteristics (clinical symptoms and Th1/Th2) and the test results over time). No statistical methods are described (nor applied). Etc.

I think you are being to mild when about the duplicate photos. This is really troublesome and indicates “fraud”. It reminds me of the XMRV -data published in Science that appeared to be cut & pasted from other data. (is it a coincidence dr. Kenny De Meirleir was one of the few people able to replicate the XMRV data?)

There are 2 minor points I disagree with.

First the authors only use the spectrophotometer for (as they call it) quantitative aspects. But you can see clor changes specific for negative, positive and mildly positive samples with the naked eye. Thus if the test was accurate & meaningful, then you could use the test at home without any additional tools (the problem is that it doesn’t tell you a lot).

Second, the H2S test (which got a lot of attention in the Belgium press but was never published – in a proper journal that is) was meant to “prove” that the illnes had a physiological basis, the current test does exactly the same. (but perhaps I do not understand the point you are making).

This bogus article made me wonder IF de Meirleir really publishes in good scientific journals, but he does (26 hits in PubMed).

What I find the most worrisome is that publication of these “findings” in what looks like an authentic medical journal (plus the media attention for non-publishable findings) is only meant to convince patients that it is a scientific sound new test… which they should buy.

Jacqueline (Laika)

p.s. thanks for referring to my blog post.

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