By David Tuller, DrPH
*This is a crowdfunding month at UC Berkeley. If you’d like to support my work, the link is here.
In a medical context, what does “recovery” mean? A pretty standard understanding is this one offered by The Free Dictionary: “a return to a normal or healthy condition.” If experts suggest a treatment leads to “recovery,” it would be reasonable for patients to expect, well, “recovery”—that is, to be free of symptoms and capable of resuming their former lives.
For decades, the so-called “biopsychosocial” (BPS) ideological brigades have argued—with little credible or reliable evidence—that graded exercise therapy (GET), cognitive behavior therapy (CBT), and related rehabilitative strategies can lead to “recovery” from symptom-based conditions that resist easy biomedical explanations, including what is now generally referred to as ME/CFS. Based on such claims, government agencies and insurance companies have routinely rejected requests for disability and welfare benefits and instead tend to push patients toward these purportedly curative interventions.
Two recent papers shed some light on how, when it comes to ME/CFS and related conditions, this promised “recovery” is less than meets the eye. The papers demonstrate that the concept has been revised downward to mean, more or less, making peace with having a chronic, life-changing illness, and no longer feeling so shitty and depressed about it. (I have discussed these papers here and here.)
The first, “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” from Abrahamsen et al, was published last month by the Scandinavian Journal of Primary Health Care. The second, “Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment,” from Ingman et al, was published in December by the International Journal of Qualitative Studies on Health and Well-Being.
In fact, “recovery” in this field has always been a slippery construct. For a 2013 paper on “recovery” among participants in the fraudulent PACE trial, the investigators significantly weakened all four of their recovery measures from what they had proposed in their protocol. They apparently did not receive any approval from trial oversight committees for this wholesale post-hoc redefinition of “recovery”; at least, the paper did not mention any such approvals.
Even in the PACE investigators’ manipulated presentation of their findings, only 22% of participants in the trial’s CBT and GET arms achieved the revised definition of “recovery.” In a reanalysis of the trial data based on the more stringent measures outlined in the protocol, all arms of the trial experienced very low rates of “recovery,” and there was no statistically significant differences between those who did and did not receive the interventions. (I was a co-author of this reanalysis paper.)
In any event, the PACE investigators weren’t actually measuring “recovery.” In the 2013 paper, they acknowledged that they were defining “recovery” as “recovery from the current episode of the illness,” but that they could make no predictions about future bouts. In other words, they were assessing “remission”—not “recovery.” To grab attention by including the word “recovery” in the paper’s title, only to downgrade the meaning so significantly in the fine print, can be described as a bait-and-switch strategy.
So I’ve never taken claims of “recovery” from members of this cabal too seriously. As with the PACE trial, such claims all seem to be forms of bait-and-switch. As I have documented over and over, the research purporting to show major benefits from psycho-behavioral interventions is fraught with disqualifying flaws.
In Abrahamsen et al, the advice offered to primary care physicians is designed, as the paper’s title indicates, to “promote recovery.” Part of that goal involves encouraging patients to believe that “recovery” is possible, and perhaps even likely, if they pursue the recommended interventions. Here’s an excerpt from a section of the abstract called “Evidence-informed pathways”:
“Key strategies include validating patients’ symptoms and emotional experiences, providing clear explanations of symptom persistence, and developing personalised management plans that combine biological, psychological, and social approaches. Such strategies can reduce or resolve symptoms, foster hope and a sense of agency, and often lead to recovery.”
Interventions that “often lead to recovery”? That sounds promising. So what does this “recovery” entail? (Let’s put aside for now the fact that credible and reliable evidence to “inform” these strategies is limited to non-existent.)
According to Abrahamsen et al, “Recovery is a personal process that is about re-engaging with activities, reducing symptoms, rebuilding, slowly regaining and retaining previous capacity; and often realising the need to change old patterns of living; the latter emerging later in treatment.” One of several “complex barriers to recovery,” per the paper, is adherence to “a strictly biomedical understanding shaped by prior healthcare experiences.” In this view, in other words, believing in the existence of biomedical answers is not only misguided but itself presents an actual obstacle to “recovery.”
Hm. That’s a different and more equivocal picture of “recovery” than the “return to a normal or healthy condition” that I think patients generally envision.
In discussing “recovery,” Abrahamsen et al cites Ingman et al, an analysis of interviews with 19 patients who had CFS diagnoses and received CBT. The latter paper, as I explained in my post last week, essentially expands the definition of “recovery” to include a state pf coping better with chronic illness. In doing so, the paper divides “recovery” into separate constructs: “clinical recovery,” meaning full abatement of symptoms, and “personal recovery,” meaning something a bit closer to what would be called “illness management.”
According to Ingman et al’s analysis, those who have been through a course of CBT treatment generally learn to engage in “illness management” and tend to achieve “personal recovery” rather than “clinical recovery.” Symptom reduction, while welcome, is not a prerequisite for “personal recovery.” In fact, the paper implies that patients who stubbornly adhere to the unrealistic goal of “clinical recovery” are undermining their ability to attain the “personal recovery” enjoyed by those willing to accept, and adapt to, their persistent disabilities.
As Ingman et al notes:
“Recovery is a blend of ‘clinical recovery’, ‘personal recovery’ and ‘illness management’ models…Data suggests that concepts can change, and treatment may result in patients adopting views more in line with ‘personal recovery’ and ‘illness management’ models. These more flexible definitions, particularly those comprising changes to pre-illness beliefs and behaviours, new roles, acceptance and strategies to manage symptoms, corresponded with greater hope…Those participants who held predominantly ‘clinical’ definitions of recovery, involving total symptom remission and restoring what is lost without change, generally had lower hope for recovery.”
Let’s be clear. It is obviously important that people with chronic illness recognize what they can and cannot change and what improvements they can and cannot expect, and that they manage to adapt to their circumstances. In my experience, that’s where people with ME/CFS and Long COVID generally end up—and usually without going through a course of CBT or GET or another rehabilitation program.
To sum up: When it comes to “recovery” from ME/CFS and related “persistent physical symptoms” through psycho-behavioral interventions, the whole framework seems to be based on a bait-and-switch. The next time members of this cabal hype the possibility of “recovery”—remember, they like to put their own special twist on the meaning of that word.
