Trial By Error: Psych Issues Do Not Predict ME/CFS, New Chicago Study Shows

By David Tuller, DrPH

For decades, investigators have argued over the causes of the illness or cluster of illnesses variously called myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS),  ME/CFS, CFS/ME and other names. In the absence of an adequate explanation for the debilitating symptoms, a flawed approach to intervention based on the perceived need for psychological and behavioral rehabilitation has been relentlessly promoted by a committed band of professional campaigners at high levels in UK medicine and academia; their favored treatments are cognitive behavior therapy (CBT) and graded exercise therapy (GET).

These CBT/GET ideological brigades grounded their interventions in an interesting but unproven hypothesis. In their view, a cognitive disturbance in the form of purported “unhelpful” beliefs–specifically, beliefs of having a serious organic disorder–was a major factor in perpetuating the devastating symptoms. Disrupting the hegemony of these ideological brigadiers and their followers has been—and continues to be—a necessary step toward progress in seeking legitimate and evidence-based treatments.

However, assessing risk factors for ME/CFS itself presents major difficulties. People often seek medical attention long after getting sick; obtaining an ME/CFS diagnosis can take years. Reliable and authoritative data from patients’ pre-sickness days are often not available. Doctors and researchers then have to rely on patient recall, which is subject to significant bias.  

That’s why prospective research—like a study from investigators at DePaul University and Northwestern University, both in Chicago—is so important. It is well-known that a significant minority of young adults who contract infectious mononucleosis go on to develop ME/CFS. For the Chicago study, the investigators enrolled Northwestern University students between 2014 and 2018 and tracked the group for cases of mononucleosis. They collected questionnaire data and blood samples at multiple time-points to assess differences between those who developed ME/CFS after mononucleosis and those who didn’t.

The study used the DePaul Symptom Questionnaire to assess whether participants met any of three separate case definitions—the 1994 Fukuda definition, in which the core symptoms of post-exertional malaise (PEM) is not required, along with the 2003 Canadian Consensus Criteria and 2015 Institute of Medicine definition, both of which do require PEM. Participants who met more than one of the three definitions were characterized as having severe ME/CFS. (The logic behind this decision was not provided.)

DePaul University psychology professor Leonard Jason is one of the lead investigators. On Christmas, the journal Clinical Infectious Diseases published some key results. (Jason and colleagues have also adapted the study to track cases of Covid-19 and any subsequent prolonged symptoms. Earlier this year, I wrote about this redeployment of the research for STAT.)

After reviewing their data on risk factors for developing ME/CFS after a bout of mononucleosis, Jason and his colleagues reached this firm conclusion: “At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more psychological symptoms, than those who recovered.”

Of particular note, those who ended up with an ME/CFS diagnosis did not differ at baseline for depression, anxiety, stress and coping from those who did not end up with an ME/CFS diagnosis. Moreover, their baseline scores on the DePaul Symptom Questionnaire were higher and levels of some cytokines were significantly different.

In other words: The study provided no evidence that “unhelpful cognitions” have anything to do with generating the symptoms characteristic of ME/CFS. That means interventions based on such reasoning—like CBT and GET—would not be indicated.

In the study, of 4501 participants with baseline data, 238 developed infectious mononucleosis. Of those 238, 55 (23%) met at least one case definition for ME/CFS six months later and 157 (66%) had no remaining symptoms. Of the 55 participants identified as having ME/CFS under any of the three definitions, 20 patients—or 8% of the sample with mononucleosis–met more than one definition and were categorized as having severe ME/CFS.

Interestingly, the lower percentage is more in line with previous research on the prevalence of an ME/CFS-like illness after mononucleosis, so perhaps the investigators’ strategy for defining severe disease weeded out some of those without the full spectrum of core symptoms. Some of the participants who remained symptomatic at six months were perhaps experiencing a natural but prolonged recovery from post-viral fatigue rather than an actual case of ME/CFS. It would be useful to learn the results at 12 months.

{ 10 comments… add one }
  • CT 30 December 2020, 3:43 pm

    So why didn’t the UK mega-brains think of that?

  • lou barnes 30 December 2020, 4:22 pm

    More evidence of the terrible damage done by such proponents of this treatment. Criminal to have allowed it.

  • Lady Shambles 30 December 2020, 4:56 pm

    Banging the same old drum warning: I have yet to hear a satisfactory reason for CCC being used in favour of the newer and more emphatic ICC which provides the basis for both research and clinical settings. Come on people… using the right criteria is clearly rather essential to diagnosis as this blog and its source material illustrate.

    Wrt to long lasting post viral fatigue: back in ‘my day’ it was assumed that a PVFS type sequalae could continue for multiple years before resolution. This of course being very distinct from ‘ICC ME’. In fact I knew someone who contracted EBV and had a fully acute presentation of ‘Glandular Fever’ which then led to 2 years of debility before normal health was resumed. That person, to my recent knowledge, is still healthy 40 years later. Today, unfortunately, he would have been thrown into the ‘CFS/ME’ diagnostic waste-bin and would still, presumably, be of the opinion that he had cleverly made a full recovery from it…something that those of with ICC ME know is rare at best. Adding someone with that experience of post-viral illness to any research process badly skews resulting data which is then extrapolated as applying to ICC ME patients. Not helpful!

  • Leela Play 30 December 2020, 5:42 pm

    I’m glad you covered Lenny’s study David. THere’s a lot squeezed in to one of the only large studies over time..

    Do find it a bit odd that if a person met 2 definitions they were classified as severe. The rationale can’t be having mandatory PEM as even mild cases have PENE/PEM. Hope this gets explained at some point.

    And really hope they will follow-up at 1 yr , 2 yr. , 5 and 10 yr. For while our current definitions mostly say ME can be diagnosed after 6 months, and NICE I think4 motnhs and ICC immediately, my sense is that is more like the Dubbo study and maybe about 1/2 of those meeting a ME or CFS definition at 6 months will continue to recover and no longer meet the criteria at 1 yr or 2 yr.

    I feel there is a grey area between having post viral syndrome and having ME that there is just not enough research into yet. THe pathway I see is 1. virus 2. postviral syndrome OR recover 3. stay with postviral syndrome OR develop into ME 4. Recover from early ME but still have postviral syndrome OR recover from both OR get full-blown ME. And there’s probably a 5th, where people who seemed to recover or not get ME in stages 1-4, later on get ME, perhaps after another virus or strong stressor. Looking forward to more research tracking this

  • Ellen Goudsmit 31 December 2020, 12:48 pm

    Looks like a clever design. I like longitudinal studies. The results are consistent with those of the Australians. Personality etc not related to chronic symptoms after infection. In short, I knew this in the early 1980s. Hence my work after that, and my criticisms of the cbt model. Made no sense to me from the beginning.

  • Patrici Snow 31 December 2020, 9:36 pm

    Would be helpful to have a glossary to sort out all the initials.

    Infuriating that time energy and money was/is wasted on trying to waft away the illness as mental. Studies/research should go toward discovering why 8% developed acute ME, while others only mild or none.

    Will throw this in, too, fwiw: I suspect the fact that the majority of peeps with ME are female predisposes more than a few researchers to look for psychological explanations, instead of physiological ones.

  • jimells 1 January 2021, 9:31 am

    Dr Jason was able to organize the study, collect the data, analyze it, and get it published in spite of his illness and limited resources. And to top it off, the study is actually useful.

    Meanwhile, the alleged “world class” CDC with huge resources and non-stop public relations has *still* not produced a single results paper from its ballyhooed “Multi-site Clinical Assessment of CFS” [1] after TEN YEARS. This is a complete failure to perform by an incompetent agency.

    What is surprising to me is the complete failure of ME advocates and advocacy organizations to follow up on this issue or the (permanently) stalled NIH intramural study. People are all excited that US government has allocated money to research Long Covid, the shiny new thing getting all the attention. I guess people just do not want to believe that public relations programs are not the same as competent research programs.

    Will anyone ever investigate who is actually making the policy decisions around ME research and then enforcing them?

    [1] https://www.cdc.gov/me-cfs/programs/multi-site-clinical-assessment.html

  • Guido den Broeder 2 January 2021, 10:47 am

    None of these criteria have anything to do with ME.

    ME is a specific disease, not a part of some CFS cluster of unexplained symptoms. There is no link between ME and CFS expect that CFS was once introduced in an attempt to hide ME outbreaks.

    With regard to CFS, the study doesn’t seem very helpful. The claim to defeat was never that cognitions generate CFS, only that they perpetuate it. Further, looking at post-mono patients covers just a tiny part of the CFS population.

  • Kat 4 January 2021, 5:36 am

    I agree with Leela about the need for further followup at those intervals. It would be interesting to see how both the severe and mild cases fare with long term follow up. I’m really interested in identifying mild ME so people can learn pacing before it becomes moderate; i believe i had mild ME after mono, and it slowly became moderate after a major life change. Didn’t get diagnosed until it became severe.

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