Archive link that avoids giving them clicks:
https://archive.vn/L471V
Looks like more persuasive propaganda than some people might want to give it credit for. Like a lot of these articles, it seems to avoid saying much of substance, going more for creating an impression.
Maybe we should learn from this? We clearly need to work on persuasively reaching out to people more. I have to admit that I don't like the idea of trying to write like this, but it's at least worth thinking about what makes this sort of thing appealing to a certain sort, and what can be off putting about some of the things we can write.
Again, it's all the predictable lines of attack, often stretched in misleading ways. But also, with some advocates playing into tropes in ways that can cause problems.
Advocates of the so-called contested illnesses that number among the most controversial topics in medicine—including chronic fatigue syndrome, or
ME/CFS;
chronic Lyme disease; and, more recently,
long Covid—fiercely reject FND as tantamount to telling patients that their suffering is all in their heads. ME/CFS activist and documentary filmmaker Jennifer Brea
insists that FND is “not a diagnosis that is ready for prime time.” Other advocates quip that it’s an acronym for “fictional non-diagnosis.” They say that their illnesses are strictly
physical; the idea that their mental health could have anything to do with their symptoms is as offensive as dismissing HIV as anxiety.
It's interesting what claims are supported by linking to some sort of evidence, and which are not. The only supporting evidence for this representation of the attitudes of advocates for "so-called contested illnesses" [called by who? who decided these particular conditions should be lumped together like this?] is the Jen Brea quote, which is more limited in its claim than the assertions about 'advocates' made by Shure.
Is Shure saying that Brea thinks this?: "They say that their illnesses are strictly
physical; the idea that their mental health could have anything to do with their symptoms is as offensive as dismissing HIV as anxiety." Who is she saying holds this stupid view? As it is, it seems to be left floating as a vague smear on anyone thought of as an 'advocate'.
Also, the way things are introduced was more tabloid than the tone the piece seem to be going for, eg: Jen Brea 'insists', they 'fiercely reject' FND. While later on, Sharpe's quote is introduced with: "More importantly, he said, “some people’s lives will be damaged because they won’t have rehabilitation when they could have, and that’s terrible.”"
There were other little presentation things, like a headline from Fiona Lowenstein is all in excitable scary caps while the headline from Paul Garner in the following sentence is not. I thought Shure's description of Sharpe's impact on patients was funny: "He couldn’t make patients’ lives perfect, but he could help them improve." It has the rhythm of being balanced - she acknowledged that he failed to make their lives perfect.
As it turned out, there were quite a lot of these patients, and Sharpe passed on his passion for treating them to his young neurologist advisees, Jon Stone and Alan Carson. In the 1990s and early 2000s, it was becoming clear that illnesses previously known as hysteria
hadn’t simply vanished, sorted into more appropriate diagnostic categories, as Eliot Slater had urged decades earlier. Stone and Carson began to study the symptoms with a
neurological lens, conceiving of them as misfiring brain signals rather than a Freudian cry for help. Rebranding hysteria as FND was to reject the notion that the best way to understand functional paralysis was as a subconscious repression of childhood memories.
Omitting the openly acknowledged political reasons for 'rebranding', some of which seemed to reflect attitudes towards patients that are worrying, seems a mistake.
Almost immediately, ME/CFS advocates recognized what was going on: Long Covid, they believed, was simply the latest wave of their own disease, which often followed viral infection.
That seems quite strong. My impression was that a lot of patients were concerned about a potential for post-viral problems like ME/CFS with Covid, but also that there was an awareness of how much uncertainty there was and that research would be needed before strong claims could be made.
A number of the links in this article don't show what they claim to show. There's little things like the link for PACE's protocol going to the Lancet paper, then this:
That made GET and CBT the
only clinically validated treatment for ME/CFS.
Links to the article:
Oxaloacetate Treatment For Mental And Physical Fatigue In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long-COVID fatigue patients: a non-randomized controlled clinical trial
That's quite an important assertion she made ["violently insisted"?], and it seems to have been supported by a fairly random paper.
For Maxanne McCormick, the former physician’s assistant who recovered from the worst of FND with methods resembling CBT and GET, the risky treatments patients get sucked into are disturbing.
As Shure seemed critical of ME Action for posting anecdotes of people reporting being harmed by CBT and GET ["MEAction is running a PSA campaign geared toward
warding viewers away from the treatments validated by PACE. Its website contains links to anecdotes about patients who say they had to go to bed or use wheelchairs after short walks."], maybe it's a little weird to frame her piece with the anecdote of someone who largely recovered with something described here as 'resembling CBT and GET'?
Also, when described at the start of the article it sounded quite different to CBT and GET:
"She threw herself into the rehab exercises she was cautiously told might help retrain her brain: She focused on her reflection in the mirror, trying to direct the image to complete tasks she’d long since failed to will her own limbs to do. Maxanne’s tone—she is “Max” to her friends, blog readers, and journalists—gradually changed from deliberate and clinical to giddy as she recounted this part of the story. “The initial recovery was nothing short of miraculous,” she told me. Her speech returned right away. Within a week, she was walking again—first around the house, then around the block, then down the aisle at her youngest daughter’s wedding. “Of course, it was still difficult being around a lot of people and noise and things like that,” she said. Even today, things aren’t perfect."
This description from later in the article also sounds quite different to CBT and GET:
He asks patients to count backward by three during exercises, or practice going up stairs backward, to reset their autopilot. That is more or less what Max and her care team have tried to do, through rehab drills, stress management, habit building, and practicing various motions in the mirror.
And while misdiagnosis does happen, it’s arguably worse to err on the side of biomedicalization: For example, FND patients with functional seizures have been
inappropriately prescribed antiepileptic drugs with serious side effects.
Rather than seeing things in terms of 'psychological vs physical vs sophisticated biopsychosocial' why not just commit to being more honest with patients about how little we really know? Erring with overconfidence seems to be a reoccurring problem in medicine and this is bad regardless of the form it takes.
I've kept coming across the irritating assumption that people being critical of work like PACE must therefore be in favour of some pharmaceutical intervention or biological theory. I find that way of thinking quite odd.
It’s tiresome how often statements like “dismissing women’s conditions as psychological” go unchallenged—as if so-called psychological illnesses are frivolous or fake rather than some of the most persistent and irrevocable drivers of human suffering.
How often do they go unchallenged? There was not supporting link, and when I googled that quote only links related to this article came back.
I think that there are ways of viewing women's conditions in psychological terms than can be dismissive, and can be sexist. And there are ways that are not. It depends on specifics. Shure doesn't go into the specifics so it's hard to know what she's really saying here, but the tone of her piece will appeal to a certain sort that likes the idea of seeming sophisticated and compassionate towards MH problems.
After decades of biomedical research, we’re
just as far from
curing depression as we are long Covid: For the majority of patients,
antidepressants barely beat placebos.
Barely beat placebos? How does that compare to CBT and GET?
Drugs can zero in on a pathogen, but they aren’t so good at targeting the biopsychosocial factors that shape our well-being.
Are fancy sounding biopsychosocial interventions better?
When faced with such patients, the most odious doctors will drop them down a chute into crankland, where they’ll be subject to a dubious or even dangerous barrage of tests, tweaks, and experimental procedures rarely billable to insurance.
There are a few bits of this article that drift towards fantasy, and that left me tempted to take the imagery here literally.
What Zachary describes here, also sounds quite different to CBT and GET:
Zachary Grin, a physical therapist specializing in FND, told me that, unlike conventional rehab with a more specific focus—say, leg strengthening exercises after a leg injury—functional symptoms require more systemic work to reset the connection between brain and body. He asks patients to count backward by three during exercises, or practice going up stairs backward, to reset their autopilot. That is more or less what Max and her care team have tried to do, through rehab drills, stress management, habit building, and practicing various motions in the mirror. Paul Garner—the infectious-disease doctor in the U.K. who wrote some of the earliest first-person pieces about long Covid—
recovered in a similar way. Both say that embracing a biopsychosocial framework has been key to their recovery, and they have concerns about how the dominant media narrative is affecting patients. “I had to stop the Facebook groups, get away from talking about my symptoms, and try to put them into context,” Garner told me.
People like Maxanne and Paul were fortunate to get better from the worst points in their lives. So many people don’t. What both of them had—and what every ill person deserves, regardless of the cause of their symptoms—is support. They were loved and helped by family members, able to survive without working during their illness, and enjoyed secure housing and access to good health care—all the tools they needed to thrive.
Just look at the way the PACE team tried to support patients like Alem Matthees. Alas...
Once we finally recognize how dramatically illness is driven by psychosocial distress, we can get to work engineering less of it
through politics. We can provide better social and disability support for sick people, give them time to convalesce,
redistribute resources so that no one is balancing their health on the edge of their last nerve. We can
fund robust childcare,
family leave, and
early childhood education to alleviate the systemic strain that
burdens women and disproportionately makes them sick. We can
fight for universal health care built on a comprehensive primary care system, so that doctors and patients develop meaningful clinical relationships over time, and patients can discuss their concerns and manage symptoms over time in appointments less encumbered by revenue maximization.
None of those links seem to support her contention.
Also, how dramatically is illness driven by psychosocial distress? It feels as if she's assuming she laid out more of an argument here than she has?
What makes her think that recognising X (whatever X may be) will lead to all those other things? The UK government's adoption of a biopsychosocial understanding of disability didn't seem to carry us to a more idyllic society - quite the opposite. Is this more than posturing designed to appeal to the sort that like to think of themselves as sophisticated and compassionate?
Is there any point engaging with this properly? If so, how?
