By David Tuller, DrPH
It’s been a slow period. Here are a few things I’ve read recently…
“The pandemic’s untold fertility story”
While Long Covid disproportionately affects women, its impact on their reproductive lives has not received the attention the issue deserves. Recently, Australia’s ABC News addressed the issue with a moving piece called “The pandemic’s untold fertility story,” by reporter Hayley Gleeson. Long Covid, Gleeson writes, is “snuffing out some patients’ dreams of having children, and complicating pregnancy and parenthood for those who choose to conceive despite their symptoms and doubts about when or if they will recover.”
The article continues: “For many, getting good advice about fertility and reproductive health is a stressful, confusing experience that is frequently complicated by a lack of research — and lack of awareness and education among medical practitioners. And it’s creating a huge well of uncertainty and sadness, deepening feelings of loss and grief that patients and their families have been nursing privately for years.”
One of the article’s protagonists is Melanie Broadley, a postdoctoral scientific researcher in her 30s, who developed Long Covid after an acute bout of Covid-19 in 2022. She remains largely bedbound. The article sensitively conveys her emotional turmoil at finding herself far too disabled to currently consider getting pregnant. “I’m feeling like my only hope to have a child is spontaneous recovery from long COVID but I don’t have a lot of faith in that happening…I really worry that if I don’t have a kid, it’s something I will regret and feel pain about for the rest of my life,” she tells Gleeson.
The article extensively quotes Beth Pollack, a research scientist at the Massachusetts Institute of Technology who studies Long Covid, ME/CFS and related conditions, and highlights a private Facebook group on Long Covid and pregnancy. The article can be read in full here.
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“Recovery-oriented” CBT for ME/CFS and MUS violates psychology ethics
There are a lot of angles from which to critique the theoretical house of cards underpinning psychological and behavioral treatments for ME/CFS and related conditions. You could just call the whole thing a huge pile of crap, as I probably would. A new paper in BMJ’s Journal of Medical Ethics—“Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/ chronic fatigue syndrome and ‘medically unexplained symptoms’” –takes a more considered perspective.
The lead and corresponding author, Joanne Hunt, is an affiliated researcher with the Department of Women and Children’s Health at Uppsala University in Uppsala, Sweden whose work focuses on “the (bio)politics of ‘contested’ chronic illness and disability.” Her co-author, Charlotte Blease, is a health informaticist with appointments at both Uppsala University and Harvard Medical School in Boston.
The authors focus significant attention what they refer to as “recovery-oriented” cognitive behavior therapy (CBT) for ME/CFS and related conditions, in contrast to forms of psychotherapy offered as supportive care. Here is their very apt description of this intervention:
“Recovery-oriented CBT for ME/CFS (and increasingly, for MUS) focuses on illness-related beliefs and behaviours that are deemed to be ‘unhelpful’ (irrational, catastrophising or otherwise biased and maladaptive) and thus present barriers to recovery. More specifically, this type of CBT draws from fear avoidance theory, which posits that these conditions are maintained by an alleged fear of engaging in activity (in turn, often alleged to be driven by catastrophising cognitions vis-à-vis the consequences of activity) and subsequent avoidance of activity, perpetuating ‘fatigue.’”
The article, categorized by the journal as an “extended essay,” presents the case for the proposition that this recovery-oriented version of CBT violates professional norms in psychotherapy. To make the case, the essay focuses on four key planks of the British Psychological Society’s code of ethics: respect, competence, responsibility, and integrity. The authors document how recovery-oriented CBT is essentially incompatible with those principles, and recommend revamped training and related strategies to improve clinical care. The full article is here.
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How to fake your findings
I was intrigued by one of the references for the Hunt-Blease essay—a 2016 paper in the journal Epidemiology and Psychiatric Sciences called “How to prove that your therapy is effective, even when it is not: a guideline.” This smart, entertaining analysis does not mention PACE or any other papers emerging from the “huge pile of crap” (see above item) being critiqued in the paper that cites it.
Nonetheless, it provides some insight into why and how so much unbelievably bad research gets published, and in prestige journals, no less. The abstract succinctly sums up the message:
“Aims. Suppose you are the developer of a new therapy for a mental health problem or you have several years of experience working with such a therapy, and you would like to prove that it is effective. Randomized trials have become the gold standard to prove that interventions are effective, and they are used by treatment guidelines and policy makers to decide whether or not to adopt, implement or fund a therapy.
“Methods. You would want to do such a randomized trial to get your therapy disseminated, but in reality your clinical experience already showed you that the therapy works. How could you do a trial in order to optimize the chance of finding a positive effect?
“Results. Methods that can help include a strong allegiance towards the therapy, anything that increases expectations and hope in participants, making use of the weak spots of randomised trials (risk of bias), small sample sizes and waiting list control groups (but not comparisons with existing interventions). And if all that fails one can always not publish the outcomes and wait for positive trials.
“Conclusions. Several methods are available to help you show that your therapy is effective, even when it is not.“
But the whole thing is well worth a read because of its many pearls of wisdom, which include this incisive advice on how to boost bias and maximize the placebo effect so as to improve the reported results:
“It is very well possible to strengthen expectations and hope in participants to the therapy. Just express your own belief to them, namely that this is the best therapy currently available. And you can advertise for your trial in the media explaining why your intervention is so innovative and unique and definitely the best among the available interventions.”
The full paper is here.
Many thanks David for taking the time to read and summarize these pieces/articles for us. I appreciate the amount of work involved in that, especially when I’ve been trying to read just one of them – the paper about supportive psychotherapy for ME/CFS and MUS.
In relation to that paper, I’d say that I’d find less wrong with a biopsychosocial (BPS) approach (as compared to a biomedical one) if – big IF – BPS proponents and prescribers were bothered about real psychosocial outcomes and deterioration in patients in their care, but I’ve seen little evidence of that. It seems to me that those who prefer to work to the biomedical model express considerably more concern about patients struggling psychologically and socially in the real world due to the fallout of their unexplained or difficult-to-treat conditions. I do think there is a lack of responsibility and accountability in the field of MUS with respect to psychosocial harms (as well as biological ones) that patients suffer due to a failure of health staff/services to provide adequate investigation and appropriate care. Sticking to their BPS (mantra/management strategy) guns shouldn’t be seen as clinically appropriate when it’s clear that a patient is deteriorating either biologically or psychologically or socially, and I don’t think blaming the patient for their BPS deterioration (on the basis that they’re not complying sufficiently with approaches that are poorly evidenced at best, harmful at worst) should be deemed acceptable.
Where are the studies of the mid- to long-term psychosocial outcomes and trajectories of people regarded as MUS cases who’ve been diverted down the psychotherapy/physiotherapy route and effectively shut out of biomedical care? In the UK, I’d say that the NHS is failing badly from a biopsychosocial perspective if it’s failing to monitor these outcomes in patients who it believes comprise 1 in 4 people who visit their GP.
Hats off to these authors for not only investigating and identifying problems and traps that psychotherapists can fall into but also suggesting ways to improve psychotherapy practice to help patients who are struggling to cope with the repercussions of their unexplained/difficult-to-treat conditions and poor medical care. ME patients have previously been compared to cancer patients and painted as awkward healthcare customers in comparison for not embracing psychotherapy in the way that cancer patients supposedly have. I’m pleased that this paper spells out the difference between psychotherapy being employed as a supposedly curative/restorative treatment and the supportive role it can play for some ME/MUS patients (as it does for some cancer patients) who are struggling because of the BPS repercussions of their condition.
Thank you David, for drawing my attention to it.