By David Tuller, DrPH
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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.
Indeed, this doesn’t just relate to ME/CFS but to all sorts of conditions with persistent physical symptoms including severe chronic pain. Take this from a complaint response letter from a leading UK NHS Trust (in reply to a complaint question as to why a patient with severe pain, who was deemed unsuitable for the pain relief that other patients with similar pain were being offered/given, wasn’t therefore being managed as an exceptional case in terms of the investigations and treatments that they were being offered):
“Unfortunately [the complainant] is not an exception. A high proportion of our patients have terrible pain conditions that do not respond or are unlikely to respond to surgical or medical intervention. In these cases, we try to help the patient to manage their ongoing pain condition using a variety of physical, psychological and pain management techniques to help them gain some control of their pain condition; to reduce distress and suffering caused by their pain condition; and to try to help them to gain a good quality of life despite their ongoing pain. It is difficult to do this if patients are continuing to seek a medical or surgical ‘cure’ for their pain and sometimes patients need to explore other options before they are ready to consider a management approach. ”
In other hospital documentation, doctors recorded that they didn’t think that the patient was ready at that time to engage in a multidisciplinary approach to managing their pain symptoms.
In despair, the patient in this case travelled to North America for surgery that removed their pain in an instant. In the true sense of the word, they were recovered but the NHS Trust in question hadn’t been prepared to contemplate this surgery and hadn’t promoted or expedited an obvious and reasonable investigation that would have pointed towards that surgery being the correct path in this case. That leading Trust hasn’t apologized to the patient for essentially condemning them to several years of severe pain and biopsychosocial harm and decline when there was a treatment they could have done that would have prevented it.
It looks to me like the management of ME/CFS has long been viewed by BPS proponents as an exemplar for the management of other medically unexplained symptoms (MUS), now repackaged as persistent physical symptoms (PPS) -https://www.sciencedirect.com/science/article/abs/pii/S0163834397803155 . I imagine that’s why ME/CFS patients have suffered to the extent that they have and why they continue to be gaslit so badly. It seems that in the UK at least we are now seeing the same management model being employed across the piece for any symptoms that aren’t readily explained via basic tests. It appears that the objective is no longer true recovery but, as David describes so well, it has instead been reduced to the patient “making peace with having a chronic, life-changing illness, and no longer feeling so shitty and depressed about it”.
I can’t see how the biopsychosocial harm to the population from that reduction won’t be any less than immense.
The same could be written about Theranos’ failed technology with very few changes. They promised machines that replaced existing, expensive machines, doing the same thing at a fraction of the cost. They could have sold them, could have pocketed the money, if only the clinical laboratories had purchased and used those machines, while continuing to use the working, expensive machines alongside. The labs only had to change their own definition of what it means to replace expensive machines that work with less expensive machines that don’t by simply meaning using them both for twice the price and worse outcomes.
It’s so much easier to promote fraudulent medical claims than to get away with selling a failed high risk technology to rich investors.
(P.S.: there’s a stray “pf” where it should say “of coping”)
Following on from my comment above, the NHS hospital trust stated that the patient “is not an exception”. If that was true then that means that many other patients who the hospital also considered “unlikely to respond to surgical or medical intervention” may not be barking up the wrong tree either by seeking “a medical or surgical ‘cure’ for their pain”, may actually be correct about their own bodies and could be helped or cured by medical or surgical interventions. Either this was an isolated/exceptional case of the doctors getting things badly wrong, possibly due to discrimination of some sort, or it signals that the currently adopted sweeping approach to harder-to-explain symptoms and pain management can cause considerable harm and requires an urgent reevaluation across the board. Without ruling out the possibility of discrimination playing a role in this case, it sounds to me like the management approach to this patient was not a one-off and that their subsequent true recovery via surgery abroad has exposed the belief system of the UK doctors and hospital trust as faulty and reckless. (The medics involved weren’t juniors but included senior pain management consultants in a leading NHS teaching hospital.)
Dangerous a doctor that won’t acknowledge his/her mistakes. Even more dangerous, a hospital trust and a healthcare system that refuses to accept that the sweeping approach they’ve adopted is deeply flawed and dangerous.
Hello David, I am a past medical doctor with mod/severe ME. My pain is severe and relentless and I am bed- and homebound. My medical care is from my perspective of no consequence to improve any aspect of my symptoms or signs, despite many years of trying I have been deteriorating and find nothing to be of help. I have noticed that a lot of patients like me get to the level where our only fellow human beings with comprehension of our situation are found through social media. This is troublesome, as there is a noticeable vulnerability for people like us to fall for claims of “recovery” from Psycho-Behavioural Interventions – what you call a “Form of Bait-and-Switch”. One of my hats is that of a clinical health improvement researcher (not able to work currently), another is of having worked in adult mental health, and I read such posts and responses with an expert eye. The amount of money charged for unproven Psycho-Behavioural Interventions by individuals without any claims in regards to qualifications, experience or outcomes, is high for an individual who is in financial hardship due to their illness. Which is most of us with this extended disease. Without protection or regulation, without scientific trials of what actually works that these people sell that we can trust, the scam continues unfortunately, targeting a fragile, vulnerable patient group willing to try ‘anything’. You are welcome to involve me in scientific trial work from home pro bono. Anything I can do to help. Warm regards, Lisa New