By David Tuller, DrPH
Earlier this month, I wrote a post about a new study asserting that “exercise does not cause post-exertional malaise in Veterans with Gulf War Illness.” As I explained, the research, led by experts from the University of Wisconsin and published by the journal Brain, Behavior, and Immunity, made no sense. Although it purported to investigate whether an exercise challenge caused Gulf War Illness (GWI) patients to experience post-exertional malaise (PEM), 85% of the trial participants had already reported that PEM was not a factor for them.
In other words, the study was essentially designed to produce self-evident results. Of course GWI patients without PEM did not experience PEM when put through an exercise challenge. I mean, really, University of Wisconsin? Put simply, this piece of research does not pass the smell test.
Along with the paper, the journal published a laughable comment from Professor Vegard Wyller, a professor of pediatrics at the University of Oslo and a dedicated member of the Norwegian arm of the GET/CBT ideological brigades. In his comment, Professor Wyller somehow tried to spin the study’s non-findings into evidence for his misguided theories.
Now an article in the Norwegian tabloid Dagbladet has focused on this study and promoted its bogus claims. And just like the journal, Dagbladet offered Professor Wyller an opportunity to opine about the study’s purported significance. (Sissel Sunde has written about the Dagbladet article in her blog Life with ME.)
I’ve had my own run-around with Dagbladet. Four years ago, the news outlet ran an article about the Lightning Process for ME/CFS that referred to my work while failing to mention my academic credentials. I wrote a letter of protest. In response, Dagbladet published my letter as an opinion piece. (I was told that, under Norwegian press law, I had a right-of-response after having been misidentified.)
My impression is that Dagbladet is generally on the wrong side of these issues. So…the new article on the GWI study is illustrated with a photo of an attractive young woman on an exercise bike, with the following caption: “People who suffer from chronic fatigue syndrome can also tolerate exercise, a new study shows.” Of course, the study was about GWI, not chronic fatigue syndrome. That didn’t stop the investigators—and Professor Wyller—from extrapolating the findings to patients with other conditions characterized by fatigue.
Here are some of what Professor Wyller had to say in Dagbladet:
“Wyller says that a feeling of pain and exhaustion is perceived as a signal that something is wrong, but according to the professor it is entirely possible to feel pain without there being anything wrong with the body.
“He emphasizes that the experience of pain and other symptoms is completely real.
“- This suggests that the symptoms occur in the brain, rather than in the body. That doesn’t mean that there aren’t real feelings, but that the symptom has another explanation – it might be the brain playing a little trick on you…I think we should do more research on the brain to find an explanation for these diseases, rather than trying to find a physiological explanation, says Wyller.”
To its credit, Dagbladet sought out someone to counter Professor Wyller’s non-evidence-based views: Karl Johan Tronstad, a professor in the biomedicine department at the University of Bergen, who is investigating ME as a disease involving auto-immune aspects. Professor Tronstad noted, as I had in my critique, that few of the GWI patients in the study actually experienced PEM as part of their illness presentation. He suggested, therefore, that it was “dangerous to generalize the findings to other patient groups.”
Professor Tronstad also told Dagbladet: “- What this study actually shows is that PEM occurs to a relatively small extent in their study group of 40 patients…Most patients who have PEM will most likely decline to participate. They know that they will not be able to complete the hard test programme, or that it would cause them to deteriorate significantly over a long period of time, he says.”
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I decided to submit a formal letter to Brain, Behavior, and Immunity about this core issue with the study. Here is what I wrote:
Dear Editor—
A recent study–“Exercise does not cause post-exertional malaise in Veterans with Gulf War Illness: A randomized, controlled, dose–response, crossover study,” Boruch et al–reported that exercise at different levels of intensity did not cause post-exertional malaise (PEM) in patients with Gulf War Illness (GWI). Even though some participants reported symptom exacerbation, those changes were washed out in the group averages.
According to the investigators, their findings support the argument that “the benefits of exercise outweigh the risks.” However, Table 3 indicates that only 15% of the study sample—6 out of 40 participants–experienced PEM as part of their GWI presentation. Although the paper noted that PEM is “prevalent” in GWI, it is not a required criterion for a diagnosis. Whatever PEM’s overall prevalence among GWI patients, it was apparently not a factor for 85% of participants in the study sample.
It is hard to understand the point of investigating whether exercise causes PEM in GWI patients who have already indicated that they do not experience PEM. Ultimately, this study tells us nothing about the potentially harmful impact of exercise on a cohort of GWI patients who actually suffer from PEM.
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
[1] Boruch A et al. Exercise does not cause post-exertional malaise in Veterans with Gulf War Illness: A randomized, controlled, dose–response, crossover study. 2024. Brain, Behavior, and Immunity. 120, 221-230.
Fantastic David – always in front and putting words to questionable studies and their hidden agendas or just bad science.
Thank you – so inspiring
Thank you for supporting MMA patients. It’s difficult to be heard here in Norway.
Thank you for supporting ME patients. It’s difficult to be heard here in Norway.
I looked to see who the editor is -https://www.sciencedirect.com/journal/brain-behavior-and-immunity/about/editorial-board – and was somewhat surprised that this study got past them to publication.
With regard to the Norwegian tabloid article, unfortunately the view that persistent pain can be a trick of the brain seems to be one that has taken hold in mainstream medicine in the UK at least (e.g. -https://www.sfh-tr.nhs.uk/for-patients-visitors/psychological-wellbeing-resources/managing-pain/#:~:text=Central%20sensitisation%20is%20a%20term,the%20pain%20threshold%20is%20lower.) It looks as if even severe pain can now be declared by doctors (including pain specialists) as being of central origin without any good evidence to support that, with potential local causes of the pain, or its local-ness, not being investigated adequately or treated. Doctors may pronounce then that the patient’s severe pain is real, but appear to care little that the patient is in agony and their life is falling apart as a result of their doctors’ unevidenced belief in central sensitization (or whatever they want to call it).
I see that the NHS webpage I linked to above (-https://www.sfh-tr.nhs.uk/for-patients-visitors/psychological-wellbeing-resources/managing-pain/#:~:text=Central%20sensitisation%20is%20a%20term,the%20pain%20threshold%20is%20lower.) and this online guide for FND -https://neurosymptoms.org/en/media/pain-videos/tame-the-beast/ – both link to videos about pain from the same person – this video -https://www.youtube.com/watch?v=gwd-wLdIHjs and this video -https://www.youtube.com/watch?v=ikUzvSph7Z4 respectively. There well may be something in it, but I’d say it’s dangerous for doctors to assume that unexplained or persistent pain has no local/tissue/organic origin when they should be investigating and treating that pain properly. It would be good to see sound positive evidence that the pain is of central origin before such assumptions are made, not just exclusion of some potential pain-causing medical conditions on a very basic level. Otherwise patients with severe persistent local pain who could be treated could be left in that severe pain for the rest of their lives.
Yes, CT, “trick of the brain” seems to me to be part of medical gaslighting and “functional” neurological symptoms, see:
https://www.amjmed.com/article/S0002-9343(24)00396-6/pdf
Michael Fraumeni commented:
“Yes, CT, “trick of the brain” seems to me to be part of medical gaslighting and “functional” neurological symptoms, see:
https://www.amjmed.com/article/S0002-9343(24)00396-6/pdf ”
Michael – Thank you for making me aware of that article. It’s good to see this issue being raised in a well-thought-of medical journal and I was pleased to see that the authors of the article had picked up on problems that have occurred with the diagnosis of Lupus in particular. However, it struck me that, while they wrote about the problem of doctors having preconceived ideas, the authors may perhaps have failed to appreciate that they might have such preconceived ideas themselves, such as ideas about somatization being prevalent, being associated with health-seeking behaviours and that it can lead to over-investigation. How do they know that these things are true? I wish doctors would challenge such assertions. The Bermingham et al 2010 paper (-https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2939455/), that presented an estimate of the cost of somatization for the NHS in England, employed somatization disorder prevalence figures (from other studies) in various healthcare settings of no greater than 1.2%, with the rest of the cost estimate being calculated from figures of “subthreshold” somatization rates. It would appear then that somatization disorder is far from being prevalent but what exactly constitutes “subthreshold” somatization? Who knows, (it would seem to be a controversial area), but one might imagine that it would be subject to huge amounts of clinician bias?
I’d argue that the most dangerous preconception held by medics today is that somatization and ‘functional’ disorders are highly prevalent/rife in every healthcare setting and that they affect women and other disadvantaged/traumatized groups more than others, thus serving to add insult to injury for patients from these groups who need better, not poorer, care. The article is a start, but unless doctors challenge what they have been taught and what has been repeated time and time again in the medical literature, and unless they demand high quality evidence to support their preconceptions and are prepared to scrutinize that evidence themselves and not just rely on articles getting through peer review, I can’t see the medical gaslighting of patients and the appalling harm that it causes ever coming to an end.
While I agree that it is important to call out unfounded conclusions in the scientific literature, the title of this article is distressing to see in an AIBS newsletter. In “Norwegian Tabloid Covers Stupid Gulf War Illness…”, “stupid” is an adjective modifying Gulf War Illness – those suffering from these illnesses find them anything but stupid. After reading the title several times, and the letter, I realize that “stupid” was meant to modify the conclusions drawn from the study. Here, I suggest that Michael Fraumeni exercise the same careful thinking he intends to invoke and avoid name-calling in scientific discourse, lest we all descend to the low level of “discourse” practiced in politics.
I didn’t find the title of this blog in any way unclear and, as far as I can see, there isn’t any name-calling in the above comments.