Norwegian version: Dagbladets skjeve reportasjeserie om CFS/ME
Guest blog written by
Jørn Tore Haugen
M.Sc. in Engineering
Through a series of articles in Dagbladet, the newspaper has raised themes associated with CFS/ME. In the articles, it is not difficult to register which side the Journalists have taken. It is poor journalism when one fails to illuminate the matter soberly from both sides.
I won’t go any further on this, but it’s a central argument when the Journalists repeat several times in their articles, for example in the interview with Professor Saugstad it says:
“However, both individual patient stories, incl. the once Dagbladet has written about, and randomized studies, have shown that cognitive behavioral therapy and graded exercise have a good effect on ME.”
This is an argument without substance in reality, nor can it be linked to any relevant scientific publications. Nevertheless, Wyller and the other supporters of the biopsychosocial dogma continue to repeat this argument in attempts to maintain their point of view, while at the same time disputing the overwhelming biomedical findings of recent years.
Statement of facts:
The Norwegian Directorate of Health write the following in the National Guidlines for CFS/ME:
“Prolonged aggravation of fatigue after physical or mental exertion is considered a cardinal symptom. In English the term “Post Exertional Malaise” and the abbreviation PEM are used.”
In 2015/16, the US Health Authorities and affiliated Agencies published several reports on CFS/ME. However, it was the report published by the National Academy of Medicine (NAM, formerly the Institute of Medicine) that was the most important one, and in which an expert group determined, after undergoing more than 9,000 scientific studies, that: “ME is a serious, chronic, complex, multi-systemic disease…. ”
The report describes PEM as an absolute prerequisite for diagnosis and is thus in line with the Norwegian Directorate of Health in that issue.
As a consequence, the CFS/ME center at Aker Hospital (part of Oslo university hospital) uses the Canada criteria.
A search in PubMed.gov on different terms for CFS/ME from 2015 (post NAM/IOM report) and up to today, one gets a total of 1499 publications. Of these, only 35 contain the keywords “Graded Exercise Therapy” and/or “Cognitive Behavioral Therapy” and/or Lightning Process and which claim positive effects associated with CBT/GET/LP and its like.
In reviewing these 35 studies, one sees that most of them are open-lable trials (open studies, which means that both patient and therapist know which treatment is being performed), and with the exception of two, they rely solely on subjective self-reporting as the primary endpoint. Open studies with such endpoints have a significant risk of bias, and therefore have very limited value.
But most importantly; in all of these 35 studies, they used diagnostic criterias which didn’t require the patient to have PEM, or PEM was not a mandatory symptom.
Based on the Norwegian Directorate of Health and NAM/IOM’s premise of PEM as the cardinal symptom of CFS/ME and e.g. the routines at the CFS/ME center at Aker Hospital, does not leave any relevant studies supporting CBT, GET, LP or similar biopsychosocial interventions to be effective in monitoring and treating CFS/ME patients.
One question survey?
Dagbladet is hereby suggested to do a small survey, and ask all the interview subjects who support the biopsychosocial dogma in the article series, the following question:
- Which studies show a positive effect of GET, CBT, LP or its like where the patients recruited for the study are all diagnosed according to the Canada criteria (or ICC or SEID) and thus suffer from PEM, such as the Norwegian Directorate of Health and NAM/IOM require?
By raising this simple question, the proponents of the biopsychosocial dogma will at best be quiet. Most likely the answer will be that diagnostic criteria doesn’t matter and a reference to a study by Brurberg et al from 2014. The problem with this reference is that it doesn’t say that criteria doesn’t matter. In the conclusion the authors states:
«Classification of patients according to severity and symptom patterns, aiming to predict prognosis or effectiveness of therapy, seems useful. … Consistency in research can be achieved by applying diagnostic criteria that have been subjected to systematic evaluation».
The result of this small test will demonstrate the lack of substance of the biopsychosocial dogma, given CFS/ME patients with PEM, diagnosed according to the Canada criteria. The above question also demonstrate that the only way to be able to have scientific references to support the biopsychosocial dogma is to claim that diagnostic criteria doesn’t matter. However, only the supporters of this dogma support this point of view.
All research is not good research!
Although it’s claimed in the Dagbladet-articles that the studies are both randomized and follow the gold standard, they don’t. The claim that the studies are on CFS/ME patients is also wrong. The broad inclusion criteria used in recruiting the study participants cause a heterogeneous group of people, which makes it impossible to know what they in fact are suffering from.
Among the other 1499 studies published since 2015, there are a number of promising findings related to neurology, immunology and energy metabolism.
Dagbladet’s entire article series is based on the technique which in science is called cherry picking. This means to only pick the arguments that support a preferred hypothesis and fail to check the other science to test whether one’s own opinion make sense. For that reason, Dagbladet has a great potential for improvement and should consider their methods.
The claims in this text are based on my own separate analyses of what is available at PubMed, in addition to reading through the 35 studies mentioned. Similar analyses should be very easy to do for Dagbladet as well.
Finally, I have no illusion that Dagbladet will respond to this letter, write other more balanced articles, or examine what significant biomedical findings have been made in recent years. Still, they should pay some attention e.g. to comparable findings made by four research groups, independent of each others.
Both the group of Ron Davis (Stanford), Fluge & Mella (Haukland/UiB), Karl Morten (Oxford) and Bhupesh Prusty (Würzburg) have demonstrated the following:
1) cells from CFS/ME-patients and also from healthy controls, behave sick in serum from the patients (reduced energy metabolism)
2) cells from CFS/ME-patients and also from healthy controls behave normally in healthy serum (normal energy metabolism)
Please note that these studies and analyses are performed on patients diagnosed according to the Canada criteria. Ron Davis has even published a study that suggests a potential biomarker and test.
Likewise, there are a number of studies that demonstrate measurable nonconformities (lactate, oxygen uptake) in CFS/ME patients (Canada criteria) compared to all others (other diseases or healthy) by two days of ergospirometry tests. Please find an overview here.
It is very difficult to see how mental processes cf. Lightning Process’s thesis that you “do ME” can have an impact on this.
Simplifying, one can say that Wyller, Flottorp, etc. builds their line of arguments, and for which Dagbladet makes speeches, on 2.3% (35/1499) of the total research, and neglects everything else.
It all becomes even more absurd when none of these 2.3% studies are done on CFS/ME-patients defined as recommended by the Norwegian Directorate of Health, NAM/IOM, the CFS/ME Center at Aker Hospital, the Norwegian ME-Association and most others who have worked with the disease for a long time.
Please be aware that during the 20 years Wyller has been working on ME/CFS (note: he most often uses self-developed criteria, his studies are thus not comparable with others findings) since he barely got his doctoral thesis passed (read Jørgen Jelstads book: The secluded ones) have not yet succeeded in documenting his favourite hypothesis. Rather, he has disproved the hypothesis through both his Clonidine study and most recently by his music study (please find a review of the music study here).
What is referred to as ME-activism by the proponents of the biopsychosocial dogma, as an attempt to downplay their opponents, is in fact factual and justified criticism of junk science. Nor are patients the only ones raising this criticism. Among the critics are also high profile and reputable researchers:
- Criticism of the PACE study by scientists.
- The PACE study is used as an example by Professor Bruce Levin of Columbia on “how not to conduct a randomized clinical trial.
- Criticism of Crawley’s LP study on children by 72 world-leading researchers with special expertise in CFS/ME and 68 patient organizations.
You may very well continue to argue for the biopsychosocial dogma, but by doing so you won’t leave the impression of having an educated point of view or knowledge up to date on the latest scientific findings made in CFS/ME.
The letter was sent to Dagbladet on 30 May 2020 by Jørn Tore Haugen.
Highlights and headlines are made by the blogowner, Sissel Sunde.