Trial By Error: More Thoughts on the Interferon Study

By David Tuller, DrPH

I was surprised recently when the UK press made a big splash about what was, in the end, a modest study from a team led by Carmine Pariante, a professor of psychiatry at Kings College London. I was less surprised when I realized that the Science Media Centre was involved in disseminating the news. The coverage generated by the SMC’s efforts largely paralleled the overblown claims made by the study authors themselves in linking this paper about hepatitis C patients to possible biological mechanisms underlying what they call “chronic fatigue syndrome.” (The same illness or cluster of related illnesses is also referred to as myalgic encephalomyelitis, CFS/ME and ME/CFS, among other names.)

In a previous post, I linked to a critique of the interferon study by “data thug” Nick Brown, so no need to repeat the same points here. (Just so it’s clear, this Nick Brown is NOT the same Nick Brown who serves as editor-in-chief of Archives of Disease in Childhood, which published the Lightning Process study.) However, the study’s publication demonstrated once again how many British journalists follow the lead of SMC-designated “experts” without much or any skepticism, at least when it comes to this particular illness.

This same pattern has been apparent in news coverage of related research promoted by the SMC, including various PACE papers and multiple studies from Professor Esther Crawley. The SMC does not acknowledge that these studies suffer from unacceptable methodological flaws, despite the objective evidence. Neither do the organization’s journalistic devotees at major news outlets, some of whom have actively participated in the SMC’s own public relations efforts even as they disseminate the SMC-curated version of events to the public.

It’s still not clear why the SMC went out of its way to publicize this study. From one perspective, the findings could be interpreted as undermining the rationale behind the GET/CBT treatment paradigm, which rests on the hypothesis that unhelpful beliefs and maladaptive behaviors—not organic dysfunction—lead to the ongoing symptoms. Perhaps the biopsychosocial crowd and its SMC enablers now recognize that they are on the wrong side of this scientific fight and are seeking to switch gears—especially with the CFS/ME Research Collaborative preparing to seek major funding from the Medical Research Council.

The CMRC, of course, is no longer a vehicle for the questionable vision of Professor Crawley, who served as vice chair until she left the group–or was pushed out–last spring. Moreover, an SMC representative no longer sits on the leadership committee, as was the case for several years. (I never understood what role the SMC was supposed to be playing at the CMRC or why it had been invited to participate.) Since then, the CMRC has pivoted from its earlier orientation to focus on biomedical research.

The MRC was the main funder of the PACE trial. The agency was inexplicably still defending PACE as recently as last summer, after more than 100 academics, scientists and other experts slammed the study’s “unacceptable methodological lapses” in Virology Blog’s last open letter to The Lancet. So a decision to fund proposed research arising from the reformulated CMRC would perhaps serve as the MRC’s tacit acknowledgement that the field has moved beyond the once-hegemonic GET/CBT framework championed by the SMC.

The over-hyping of the interferon study—which has little to do with ME/CFS except in a highly speculative way–suggests that the good folks in the psychiatry department at Kings College London might be feeling some pressure to stay relevant. Professor Pariante and the SMC appear to be trying to stake a claim to some biomedical corner of the field. But these folks have some explaining to do to anyone familiar with the larger context of research into the illness.

Have members of the GET/CBT ideological brigades changed their minds about the role of unhelpful beliefs and deconditioning in generating and perpetuating the symptoms? Or do they and the SMC hope to argue that the prolonged fatigue documented in the study is likely treatable with GET and CBT? Will this finding somehow be interpreted as fitting into the theory of “central sensitization,” which has in some biopsychosocial quarters replaced the discredited deconditioning hypothesis as the rationale for the rehabilitative approach? (I hope this year to take a more extensive look at the SMC and its relationships with media, academia and industry.)

In contrast to Professor Pariante’s hepatitis C research, a team at DePaul [corrected from DuPaul, 1/8/18] University in Chicago is conducting a prospective study that involves actual cases of the illness of interest, not a proxy model that might or might not be relevant. Over the last several years, the investigators have collected data and drawn blood samples from more than 4500 college students, according to psychology professor Leonard Jason, who is leading the research. The team is following the students to see who contracts ME/CFS after suffering from infectious mononucleosis. The study uses the DePaul Symptom Questionnnaire to assess whether participants meet various case definitions of the illness.

Whatever the findings, this approach is more likely than the Kings College London study to yield information relevant to ME/CFS rather than just to prolonged interferon-induced fatigue. By comparing those who develop the illness after a bout of mononucleosis to those who don’t, the research could shed some much-needed light on the mechanisms of disease progression.

Professor Jason said findings could be released sometime next year. Who knows? Maybe the SMC will decide to promote them.

Comments on this entry are closed.

  • Erik Johnson 7 January 2019, 6:56 pm

    British psychs have dribbled out phony concessions to “immunology” all along.
    Which they use to get patients jacked up, as if things were going to change.
    Then hope turns to disappointment as nothing does, and they keep right on BEHAVING as if CFS was just fatigue.

    They do this to stay in control, AND to write themselves an alibi for later,
    when they can point back at these “evidence droppings” and claim they believed it was a “real illness” all along.

    It’s all just the same old game.

  • Kate 7 January 2019, 7:57 pm

    Thanks David,
    Reflective of some of my thoughts that they are probably changing tac. I wouldn’t be surprised to hear that they still see get and cbt as viable treatments but framed in a different way. I was unaware of the depaul study, very cool.

  • Wendy Boutilier 7 January 2019, 8:29 pm

    Careers have been built, big financial rewards have been banked and a knighthood has been bestowed. High flying egos, greed & power snatched from the most vulnerable. The powers that be simply change the names and bulldoze their way through without a care.

  • Charlotte 8 January 2019, 9:56 am

    Nah… They’re not changing tack, I think that’s wishful thinking….
    To change tack they would have to change their beliefs, & you may as well suspect a religious fanatic of being drawn towards apostasy.

    It’s my belief that they want to use this study (which shows the ‘overactive immune response’ is only present at the start* of the illness but not later on once it’s established) to attempt to reinforce their notion that although there may be organic beginnings to the condition, any long term symptoms/disability are caused by the patient’s own faulty thinking/behaviour. Thus supporting their CBT/GET paradigm.

    So the fact that they choose to see ‘persistent fatigue’ due to another condition as a proxy for CFS – which quite frankly is like using persistent ‘losing one’s keys’ as a proxy for Alzheimer’s – is just another sleight of hand.
    I’m disappointed that the main ME charities have been so seemingly gullible & welcoming of it.

  • Lady Shambles 9 January 2019, 6:31 am

    If they’re changing tack then I should be able to think myself well! It really is that phoney a concept.

    While they play their infantile games the lives of people with ME are being lost. Get real… the CMRC is no more a genuine vehicle for biomedical research than Fred Flintstone’s ‘footmobile’ is an example of the internal combustion engine.

  • Anonymous 20 January 2019, 12:00 pm

    I’m not sure they are changing tac. Trying to save face perhaps, but to anyone who knows anything I would say it’s very embarrassing and cringeworthy – especially promoting themselves as ‘experts’ and reporting this as a ‘breakthrough’. In the end they are psychiatrists. That’s their specialism. They can’t just move into biomedical research – they don’t have the appropriate qualifications so can’t just become biomedical experts. In my opinion they should either give up on ME/CFS research altogether and focus on something else within their field, or if they genuinely want to help ME/CFS patients as they claim they do, they could work on how to treat the trauma of medical abuse and neglect. However, since they have been responsible for causing some of this harm, I would say it’s entirely inappropriate that they be involved in treating the psychological impact. So the only ethical conclusion is for them to drop ME/CFS research altogether. There are plenty of other areas of psychiatry that they could work on. Personally as a patient I feel they have contributed nothing but harm to this field. We would be better off without them.

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