By David Tuller, DrPH
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Carolyn Chew-Graham, a professor of general practice research at Keele University in Staffordshire , is a longtime proponent of psycho-behavioral interventions for so-called “medically unexplained symptoms,” or MUS—a category in which she and her colleagues include the illness they call chronic fatigue syndrome/myalgic encephalomyelitis. She and other members of the biopsychosocial ideological brigades have long recommended cognitive behavior therapy and/or graded exercise therapy for CFS/ME, and frowned on “pacing” as a strategy.
Professor Chew-Graham is the main author of METRIC, an online medical training program that promotes the effectiveness of the CBT/GET treatment paradigm. Since METRIC is based on the discredited PACE trial and its smaller “sister trial” FINE, the operating theory of illness is that patients’s ongoing symptoms arise from the combination of deconditioning and unhelpful illness beliefs. (Professor Chew-Graham was a co-author of FINE, which reported null results for its two primary outcomes of physical function and fatigue at 12 months.)
Professor Chew-Graham is also an architect of the successful push to include MUS in the National Health Service’s metastasizing Improving Access to Psychological Therapies program. The strategy is designed to shunt these patients away from further medical investigation and towards psycho-behavioral interventions on the presumption that organic dysfunctions are not causing the symptoms. Professor Chew-Graham has more than once mis-cited a seminal study in the MUS field, despite her purported expertise. The study was about the cost to the NHS of patients with MUS, and Professor Chew-Graham’s embarrassing misreading had the effect of more than tripling the apparent expenditures–an error that would likely have the tendency to increase support for expanding MUS services.
Now she has published a major qualitative study about the experiences of so-called “long-haulers”—patients who had presumed or confirmed acute Covid-19 and subsequently developed persistent symptoms. Some of these symptoms appear to be caused by specific organ damage. Others—profound fatigue, head-spinning, cognitive challenges—are often non-specific and harder or impossible at this point to attribute to identified pathophysiological dysfunctions. In other words, these symptoms could easily fall into the MUS category and/or lead to diagnoses of CFS/ME (or ME, or ME/CFS).
Professor Chew-Graham recently described the results from this study during an online webinar on long-Covid organized by the Royal Society of Medicine. As I noted on Virology Blog, she came across as sincere and genuinely concerned about what she’d heard from 24 patients. She strongly supported pacing—in contrast to fellow webinar panel member Alastair Miller, a Liverpool infectious disease expert who hailed the purported evidence base for CBT and GET. He failed to mention that the National Institute for Health and Care Excellence issued a warning months ago against assuming GET was indicated for long-Covid.
Qualitative study participants support pacing
Professor Chew-Graham’s new study, published in the British Journal of General Practice Open, offers essentially the same points she made on the Royal Society of Medicine webinar. Here are a couple of key passages:
“Most participants described how they had worked out for themselves that they needed to ‘pace’ their activities in order to conserve what little energy they had:
‘Yeah and I really have to pace myself and I can’t do … I couldn’t do two or three household chores back to back, I have to do a chore, sit down for 15, 20 minutes and then do the next, which frustrates me, it’s like peeling potatoes, I can’t peel the carrots straight afterwards.’ (P11, female, 34 years)
This, participants felt, was in contradiction to the advice on the NHS website Your COVID recovery, which stresses the importance of graded activity, and which participants described as being unhelpful:
‘Well, one of the things that really bugged me about it was the talking about graded exercise and I’ve learnt from experience that pushing myself even a tiny bit has massive consequences … I did more than I should’ve done, which is still probably only 25% of what I would’ve done before I was unwell. And was absolutely floored by it. By Monday I was in bed, I couldn’t get out of bed and with chest pains. So to talk about graded exercise and not acknowledge the post-exertional malaise…’ (P19, female, 59 years)”
And this passage, which essentially makes the same point:
“Comparisons are emerging with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: people with symptoms struggling to make their disability visible to healthcare professionals, and to access the care and support they feel they need. As a consequence of this, people have been advised to use graded activity as a means of managing their symptoms,, but then report setbacks in their symptoms. National Institute for Health and Care Excellence (NICE) has cautioned against graded activity. Most participants reported that ‘pacing’ was a helpful management strategy.”
And this, which suggests an appropriate way for GPs to act when “symptoms are unexplained”:
This study illustrates the impact of the complex problems suffered by people with long-COVID and the need for people to be believed, listened to and supported by their GP. Sharing uncertainty can be helpful to patients where symptoms are unexplained, and is certainly less harmful than symptoms being dismissed.
Some questions for Professor Chew-Graham
The problem isn’t that I disagree with what Professor Chew-Graham writes about listening to and believing patients. It is that the advice she offers GPs now is rather different from the approach to CFS/ME she has advocated for years and outlined in the METRIC training program. She appears to have a genuine understanding of these long-haulers’ fears and anxieties, and the quotes from study participants are compelling. Given her own long involvement in conveying a different message, perhaps she could provide some sort of explanation for what appears to be a shift in her thinking, if not a complete about-face.
Here are a few of my questions for Professor Chew-Graham:
Do you still believe that CFS/ME is best treated by CBT and GET, per PACE and METRIC?
Do you believe, per the theories behind CBT and GET clearly outlined in PACE, that CFS/ME patients have no underlying organic dysfunction, that their ongoing symptoms can be attributed to the effects of deconditioning and their unhelpful beliefs, and that their illness is fully reversible?
Do you believe CFS/ME patients should also be encouraged to pace, as you suggest is best for long-Covid patients, if that is what CFS/ME patients report as most helpful?
Why do you seem to have greater faith in reports from patients with long-Covid about their symptoms and their capacities for activity, even from those with no evidence of organ damage, than in reports from patients with CFS/ME and MUS about theirs? How has this experience changed your perceptions of patients with CFS/ME and MUS, if it has?
Do you believe that patients with long-Covid symptoms unrelated to specific organ damage should have no further medical examinations and be automatically diverted to CBT or other interventions through the Improving Access to Psychological Therapies program?