Trial By Error: New Biopsychosocial Study of Fatigue in HIV Patients

By David Tuller, DrPH

And here’s yet another study from Professor Trudie Chalder and colleagues at King’s College London, this time tackling fatigue in people with HIV—an often debilitating problem. The study—“A Biopsychosocial Approach to HIV Fatigue: A Cross-Sectional and Prospective Analysis to Identify Key Modifiable Factors”—was published online last month by the journal Behavioral Medicine.

The causes of HIV-associated fatigue are multifactorial and not fully understood, so it would be great to find effective ways to address it. (Many of the HIV-positive gay men I know in my age cohort—I’m 63—are dealing with some variant of this.) Some common psychological correlates of HIV infection, such as depression and feelings of social isolation, could contribute to fatigue. Like others experiencing complex health issues, many HIV patients could possibly benefit from receiving psychotherapy along with appropriate medical treatment. By helping people adapt their lives to current circumstances and lower their stress levels, such interventions could lead to improvements in fatigue and other indicators.

So this HIV study should potentially be good news. Unfortunately, it features one of the scientific missteps that have marred other work from biopsychosocial experts: the assumption that a reported association is evidence of a specific causal relationship. First-year epidemiology students are warned not to confuse association with cause, yet these experienced researchers seem not to have learned that fundamental lesson. Moreover, the new study will seem familiar to readers of previous articles from this body of research. No matter what disease is being examined —chronic fatigue syndrome/myalgic encephalomyelitis (as these researchers often call the illness in question), irritable bowel syndrome, HIV—the argument seems much the same.

To wit: Patients are catastrophizing, symptom-focusing, engaging in boom-and-bust activity patterns, and/or holding fearful convictions about the dangers of exertion. Moreover, these cognitions, emotions and/or behaviors are unhelpful and/or dysfunctional and are responsible for generating and/or perpetuating core symptoms. (I don’t really understand how patients can be both fearful of exertion and engaging in boom-and-bust activity patterns. If they’re fearful of exertion, why are they ever booming?)

By way of background, Professor Chalder was a lead investigator of the PACE trial, which was billed as the “definitive” study of CBT and graded exercise therapy for CFS/ME. As many know, PACE has since been exposed as a disaster and its findings definitively refuted; in an open letter, an international roster of distinguished scientists and physicians condemned the study’s methodological lapses and demanded an independent review of the data.

More recently, Professor Chalder was the co-lead investigator in the ACTIB trial, which tested CBT for patients with IBS. Although promoted as a success in the press release issued by King’s College London, ACTIB actually documented that telephone-delivered and web-based CBT, when compared to standard treatment, provided little or no clinically significant benefits in reducing IBS symptom severity, as noted on Virology Blog.

(In addition to its less-than-forthright presentation of the ACTIB findings, the KCL press release failed to mention a salient detail: Professor Chalder’s co-lead investigator, Professor Rona Moss-Morris, has financial ties to a company that licensed the web-based CBT-for-IBS program from the university. This company, Mahana Therapeutics, is promoting the web-based program in a misleading fashion, as Virology Blog has reported.)

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In the new study, the researchers recruited 131 patients from HIV outpatient clinics in London. Sixty-four of them—almost half—met criteria for clinically significant fatigue. At that time, as well as a year later, fatigued patients also met some of the study’s outcome thresholds for specific psychological and/or behavioral constructs. The researchers concluded that future interventions should target these specific constructs as well as more general entities like anxiety and depression.

Here’s how the researchers explained their conceptual framework:

“From a biopsychosocial perspective, disease and treatment related factors form only one part of the explanation. Fatigue is multifactorial, influenced by a variety of biological, demographic, psychological, social and behavioral factors, which are poorly understood in HIV…Across a number of chronic conditions negative illness representations, symptom interpretations and heightened symptom focusing have been associated with increased fatigue. According to the cognitive behavioral model of fatigue, believing fatigue is serious, damaging, uncontrollable and incurable and thus must be monitored, can enhance symptom perception and amplify the severity of fatigue.”

As this passage indicates, the researchers’ strategy is to apply their usual theories to various chronic conditions. After documenting the expected associations, they cite their cognitive behavioral model to argue that patients’ worries about “serious,” “damaging,” “uncontrollable” or “incurable” symptoms are themselves partly or largely to blame for their ongoing physical complaints.

In the HIV study, here is how the researchers described the results: “Consistent with our hypotheses, fatigue severity at 1 year was significantly predicted by catastrophizing, symptom focusing, distress and sleep quality after controlling for clinical and demographic variables. These findings provide further support for the biopsychosocial model of fatigue in HIV…It seems that, whilst HIV and treatment related factors may trigger the initial fatigue, psychological and behavioral factors have a key role in fatigue maintenance for people living with HIV.”

To state that psychological and behavioral factors play “a key role” in maintaining fatigue is to describe a causal relationship. (In the relevant sentence, the phrase “it seems” acts like a linguistic speed-bump; it mitigates the weight of the declaration, but only slightly.) In other words, the researchers in the HIV study reported an association and then claimed support for their causal hypothesis, making an assumption about the directionality of impact.

Yet the study results are also consistent with a reasonable alternative explanation in which the causality operates in the other direction. It is plausible that the severity of the fatigue led patients to experience realistic, normal and appropriate levels of concern—which the researchers chose to categorize as “catastrophizing” and “symptom-focusing.” This possibility is not mentioned—a major gap in the paper’s argument. The researchers should have provided a convincing account of why they believe their causal interpretation is the best fit for the data. They did not.

In the study, fatigue at baseline was associated with length of HIV infection but not with medication and blood measures. Current limits of biomedical understanding of the fatigue are not a sufficient or compelling rationale for characterizing anxiety about it as “catastrophizing”—as if such anxiety were indisputably excessive or unwarranted. After all, it should not be surprising that HIV patients who reported greater fatigue were more likely than others to focus on that fatigue and be distressed about it. Nor should it be surprising that, one year later, they were more likely to still be grappling with it.

These associations do not and cannot prove that symptom-focusing was itself a driver of the reported fatigue. The notion that patients prolong their suffering through their own reactions to their suffering is a hypothesis. It might be happening, but this study fails to make the case.

Why does this matter? Because accuracy and clarity are important in science. Moreover, the HIV study seems like part of what a recent article referred to as a campaign by “CBT empire-builders” in the UK to extend their domain. This effort is manifested in the continuing expansion of the National Health Service program known as Improving Access to Psychological Therapies, which I have written about here. Initially focused just on people with mental health disorders, the program now also covers patients with long-term conditions and so-called “medically unexplained symptoms”–a category that includes CFS/ME and IBS.

Now the biopsychosocial crowd is eyeing HIV patients. Any ideas as to what recommendations might emerge from an unblinded trial of CBT for HIV-related fatigue, relying on self-reported outcomes, with treatment-as-usual for the comparison group and with those in the CBT arm being told that CBT has already been shown to alleviate fatigue in multiple illnesses?

Comments on this entry are closed.

  • Alicia Butcher Ehrhardt 2 March 2020, 4:38 pm

    The fact that people with HIV are stigmatized and blamed for their own illness, instead of portraying some of it (the vast majority?) of their susceptibility and lifestyle as a reaction to the way SOCIETY treats them in the first place, never seems to come up, does it?

    Instead of suggesting society change its ways, the focus is on how the sick person needs to change. Cart before the horse.

    Change the society, and then help the small residual portion of the HIV patients who don’t get better this way to handle it, is the LOGICAL way.

    Stress kills.

  • Lois 2 March 2020, 4:49 pm

    Thankyou for this. It’s important that these sideways movements applying failed and/or flawed methodologies to other patients suffering other illnesses are monitored.

  • CT 2 March 2020, 6:25 pm

    Thanks for helping us through yet another BPS swamp, David.

  • Greg 2 March 2020, 11:58 pm

    Anybody who uses the F word, fatigue, is doomed to misunderstand whatever disease they are referring to. It’s a path to failure.

  • CT 3 March 2020, 4:01 am

    To me, it demonstrates a complete lack of empathy and compassion. The fatigue sufferer is made responsible for their own suffering in that they are not doing the right things and don’t have the correct mental approach/attitude to lessen it or get over it.

    I highly recommend this video on psychocompulsion -(https://vimeo.com/157125824).

    [David provided a link to Paul Atkinson’s excellent opinion piece on IAPT (https://novaramedia.com/2020/02/17/marketising-the-mental-health-crisis-how-the-cbt-empire-builders-colonised-the-nhs/) where I found the link to the video on psychocompulsion (https://vimeo.com/157125824). It’s well worth a watch. In it, psychotherapist Professor Andrew Samuels (https://en.wikipedia.org/wiki/Andrew_Samuels), Phil Thomas (an ex-NHS consultant psychiatrist – don’t let that deter you!) and Lynne Friedl deliver a clear explanation of how neoliberalism, positive psychology and individualization are harming people, with particular mention of CBT. But Samuels also explains the part that psychotherapists have perhaps inadvertently played in this. It’s both refreshing and ground-breaking IMO.]

  • PM 3 March 2020, 6:42 am

    Thanks Dr Tuller,

    It shows how poor these methods are when applied to any disease.

    People with HIV are in slightly different circumstances with (at least in the UK) specialised clinics to treat them using drugs.

    People with ME usually have nothing unless they can travel and pay to see a private doctor.

    It’s still worrying that the belief driven medics are trying to muscle into other areas.
    The wasted money and resources is a cause for concern given that my local NHS claims no money to treat ME.

    We need to examine who is funding them with such immediate demands on the NHS.

  • Lady Shambles 4 March 2020, 5:54 am

    CT – thanks that’s an interesting Vimeo. Well worth watching although it’s presented from a very anti-neoliberal and politicised pov which might alienate some watchers. However the substance of the presentation seems to ring true and it’s always curious to hear psychotherapists etc wanting to change a government top-down dogma given how we, as people with ME, have been at the pointy end of it for so long. Might we ironically see the psyches demolishing the BPS juggernaut I wonder? Wouldn’t that be interesting?

    I think Phil Thomas’s observation that (paraphrased) ‘unwittingly ..psychotherapists are being sucked into, effectively, a form of political coercion’ is spot on. I’m glad at least some of his number have woken up and smelt the coffee. I wonder how interested they would be in the persecution of people with ME by the Wessely School? Do they even know about it?

    Samuels was amusing in that he, at one point, mentioned ‘Freudian nonsense’ (hallelujah! ) and, (one of my pet peeves) acknowledged the lunacy of the label ‘Mental Health’ in that ‘there’s no such thing as Mental Health but we have to use this phrase’ . I’m assuming by that he’s as annoyed as I am that the English language has been so bastardised that an appellation can mean its exact opposite. I thought I was alone in being annoyed about that but it seems I’m not!

  • CT 4 March 2020, 7:26 am

    No, Lady Shambles, you’re not!

  • Steve Hawkins 10 March 2020, 12:22 am

    Doesn’t the HIV ‘community’ have access to some pretty powerful campaigning resources? Might it be possible to put up a legal challenge to this whole parasite army of patronising know-it-alls and issue them with a cease and desist order to make them end their harassment and manipulation of the sick for their own enrichment? They’ve attacked so many patient groups with their imbecillic ideas and supercilious interference in their lives, to the detriment of their health by denial of proper diagnosis and treatment opportunities for their real physical conditions, that it must be considered a form of assault. In this case I can actually picture them loitering with intent around HIV clinics, hoping to ensnare unwary punters for their latest hit job.

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