By David Tuller, DrPH
When the pandemic began, everyone involved in the ME, CFS, and ME/CFS domain assumed that there would be a wave of post-acute, prolonged complications, since every virus seems to leave in its wake a small but still significant number of people who report a range of non-specific symptoms. It was also widely predicted that many in the medical world would interpret these physical complaints as psychosomatic, psychogenic, or “functional,” to use the current buzzword in this complicated field.
That has all come to pass.
Luckily, the CBT/GET paradigm—as applied to ME/CFS, at least–was already in a state of collapse before the pandemic began. Not surprisingly, some of those who would be the biggest losers of this paradigm shift are among the most enthusiastic boosters of the notion that the long Covid phenomenon has been largely triggered not by any underlying pathophysiological processes but by pandemic-related anxiety, depression and other mood disorders arising from “psychosocial strain.”
So when it comes to long Covid, mainstream and scientific publications alike have lately published some pretty stupid crap–and that’s my professional assessment as both a journalist and public health academic. Two high-profile feature articles at the end of 2022—one in New York Magazine and the second in The New Republic—presented profoundly biased accounts of the history and science of post-viral illness. Both journalists flogged the idea that millions of people around the world whose health and daily lives have been ravaged by long Covid are most likely suffering from psychosomatic or functional conditions.
Right. Tell that to Pulitzer Prize-winner Jennifer Senior of The Atlantic, who just this week wrote about her own debilitating case of long Covid.
Then we’ve had the academic versions. I wrote a blog post about a poorly reasoned article in the Journal of Psychosomatic Research. In response to a similar piece in Lancet Respiratory Medicine called “A new paradigm is needed to explain long COVID,” a colleague and I sent a letter to the journal. (It was rejected, but it is posted here as a pre-print.)
The arguments seem to rely on some distorted logic: Mood disorders can impact health negatively and induce bodily sensations, therefore all health conditions and any bodily sensations we don’t fully understand must be caused by mood disorders. The first part is easy to agree with; the extrapolation in the second part is unwarranted and should be rejected.
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And now some correctives
Now we’ve had some needed correctives. This week, Scientific American published a lengthy overview o called “Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments,” by Stefani Sutherland, a neuroscientist as well as a journalist. For Open Mind, an online magazine that explores scientific controversies and deceptions, journalist and author Ryan Prior has written a column called “Gaslighting Long Haulers” that puts the current situation in some historical context.
On the peer-reviewed front, Nature Reviews Microbiology last month published a review—“Long COVID: major findings, mechanisms and recommendations” It was co-authored by two members of the formidable Patient-Led Research Collaborative, which has been a leader in pushing for investigations into long COVID. And earlier this week, Lancet Infectious Diseases published a robust rebuttal to the recent bullshit with a comment called “Why we need a deeper understanding of the pathophysiology of long COVID,” from Yale’s Akiko Iwasaki and Mt. Sinai’s David Putrino. (Here’s an interview with Dr Putrino from last year.)
The Iwasaki-Putrino essay pokes holes in the argument that the failure to have already unravelled all of long Covid’s pathophysiological mechanisms means that this outpouring of reported symptoms is largely the result of “psychosocial strain” and related constructs. Of course, the proof of a “functional” disorder is generally the lack of sufficient evidence to diagnose a biomedical or pathophysiological explanation for the reported symptoms. It is essentially a default position, with the determination often made based on normal or unremarkable findings on standard medical tests.
(That’s putting aside for a moment the sub-category specifically called functional neurological disorder, whose diagnostic criteria require the presence of what are said to be “positive” clinical signs of the condition.)
Iwasaki and Putrino address the issue directly in their analysis. Here’s a key paragraph:
“Despite the multifactorial pathogenesis, available data show that long COVID is an organic post-acute infection syndrome (PAIS) with clear physiological dysfunction that is often not consistently apparent using standard medical diagnostic tests. This discrepancy highlights the need for a new generation of more sensitive testing procedures for people with PAIS. Although it is not known whether pre-existing psychological diagnoses might influence the risk of long COVID (eg, by affecting the host endocrine and immune systems), it is neither productive nor clinically or scientifically valid to classify long COVID as a psychosomatic condition.”
A colleague pointed out an entertaining detail. Iwasaki and Putrino include a graphic of four colored gears, each representing one of the interlocking sets of risk factors that can lead to long Covid: blue for autoimmunity, red for viral reservoir, green for latent virus reactivation and yellow for tissue damage and dysfunction.
The graphic parallels a similar one in the Lancet Respiratory Medicine paper, in which the four gears bore a similar palette but instead represented triggers and risk factors related to psychological (e.g. illness perceptions, catastrophizing), social (e.g. lockdown, loss of roles), experiential (e.g. traumatic experience of illness, fear and grief), and biological (e.g. inflammation, deconditioning, depression/anxiety) domains.
It made me chuckle to think of the Iwasaki-Putrino graphic and colors as a riposte—a subtle “idi na hui” to the Lancet Respiratory Medicine article. I hope the authors did it on purpose.
So well put, thank you David.
I’m intrigued to know exactly what was found in a PhD study by one of the supposed FND experts. Watch this video -https://www.youtube.com/watch?v=wbXoAoSddx8&t=3155s – from 1.09.18 to 1.12.09 and see what you think. (I’m not sure who to believe.) Did only a small proportion of patients in the study have clear contributing psychological factors, as one expert recalls, or did a sizeable majority, as another would have us believe? I’d like to know more.
Mr. Tuller,
Thank you for mentioning and linking to the Atlantic presentation of her understanding.
She wrote: “One has to think of long COVID as a chronic illness—cause unknown, cure unknown, recovery timetable (assuming there is one) unknown.”
That is honest, rad, and strictly to the point you have been making.
Despite clear connection & correlation, shaking a dog’s tail will not wag the dog. Yet, some so-called medical experts similarly claim a potentially small effect can be amplified to achieve a miracle & criticise any evidence against their wrong beliefs.
Having connected with an ME/CFS study effort RemissionBiome.org, I ran across this today, courtesy of Tess Falor.
https://jenbrea.medium.com/health-update-3-my-me-is-in-remission-dd575e650f71
Cranio-cervical fusion cured it for this woman.
Tethered cord syndrome and cranio-cervical instability can be a cause of ME/CFS. This is more common in people with Ehlers-Danlos Syndrome. However, I don’t think this is the only mechanism, and the viral trigger is curious even here.
You may want to dig into this, David. Perhaps it might be useful to look at the work of people working with remission events. Finding remission methods and identifying causes should be the strongest refutation of all.
I doubt that cranio-cervical instability and tethered cord syndrome can be causal in relation to ME/CFS. I would view them as differential diagnoses to ME/CFS, confused with ME/CFS perhaps because either diagnostic criteria for ME/CFS have not been tight enough or because patients have been unfortunate enough to have them with ME/CFS as a comorbidity.
I see Global Burden of Disease statistician, Christopher Murray gave a talk at Berkeley recently, Dave Tuller. A few years back, I tried to get him interested in adding the invisible diseases and lost active years to his base data, because it’s hard to get the medical profession to take the problem seriously when nobody is presenting the figures to go with the patient campaigning. I couldn’t get key people in M. E. Campaigning to follow up my contact with him, but he seemed quite approachable and did want to know more.
I see in his presentation graphs here, that CoViD looks to have caused the biggest downturn in world average life expectancy since a large downspike that looks like it must represent Vietnam/Cambodia horrors. Maybe now is a good time for you to make contact with Murray to start feeding in the statistics of all the ‘MUS’-orphaned diseases and the forgotten millions, while long CoViD is in the news.
https://m.youtube.com/watch?v=EHJoiwSiHr0
David, you can quote all the so-called cherry-picked ‘experts’ you want, including Ryan Prior — on the ironically titled ‘Open Mind’ website — but the fact remains: Chronic illness is associated with past traumas/stressors, especially those preceding the illness. And ME/CFS is one of THE most classic examples. In practically no other illness do patients predict they’ll do poorly on a certain date in the future, because they did so in the past.
But most importantly, this argument where you say that those who says this has a psychological component are basically BLAMING the patient, shows you have no understanding of the subconscious. Patients didn’t consciously choose to become chronically ill. This is a result of deep-seated, subconscious or even unconscious programming that came from family situations where they grew up believing what they were told about the world was true. It WASN’T. They were and are doing the best they can. So no one chooses or decides to become chronically ill, and therefore they shouldn’t be blamed. In case you didn’t catch that, THEY SHOULDN’T BE BLAMED. And they shouldn’t blame themselves.
But if they’re constantly and chronically in a state of fight or flight, their immune system won’t work well, their gut integrity will be poor, and thus their prognosis will remain ‘chronic’. Even Robert Navieux says psychological stress is one of the contributing causes of ME/CFS!
Using brain-retraining or even types of relaxation can help to reset these issues and help us heal. It’s not saying it’s your fault you’re not well, it’s a TOOL amongst many to help one recover. And recover they do, or you wouldn’t see the half-dozen (or more) youtube channels and blogs like Cort Johnson’s featuring patients who have done just that.
And then you say pacing doesn’t work. Tell that to Laura Hillenbrand.
She was bedridden for decades, but finally decided to see if maybe, just maybe, she could make it downstairs, then make it out the door, then into a car, then for a short ride, then a longer one, etc., etc., — until she ended up driving all the way across the country and moving to Oregon.
She did that by PACING herself. Yes, other factors were involved in her getting better, but that’s why I said pacing/brain-retraining is ONE TOOL.
And it’s one tool you should stop “gaslighting”, unless of course you want folks to remain sick. Which I’m sure you don’t.
Marcia–Past trauma/stressors are a risk factor for poorer health across the board. I’m not sure why you think I’m against meditation or relaxation exercises or anything else like that. People should do the things that make them feel better. I’m against promoters of the Lightning Process and other mind/body programs making ridiculous claims of recovery from the data they present–which is a common practice.
I have never suggested that people should be blamed for their illnesses. Patients themselves routinely report that they feel blamed because that’s how clinicians often make them feel. I am well aware of the concept of the unconscious and sub-conscious, but thank you for the explanation.
No where in my writings or speeches have I ever suggested that sick people should be held responsible for their conditions. Patients frequently report that clinicians have made them feel responsible for their condition. My understanding of the unconscious and sub-conscious has been greatly expanded by your explanation.
Marcia – I’d point you to my first comment above and invite you to watch the video at the time point I indicated. Does that clip not put an element of doubt in your mind? It did me. I’ve come across several instances where FND or MUS ‘experts’ admit that clear psychological causation – trauma or whatever – is only found in a proportion or minority of cases. It seems to me that they’re now trying to move on and come up with new models but without really admitting that they got things so wrong in the past and without apologizing to patients who were neglected because their doctors clung to their own badly evidenced and unproven false illness beliefs rather than listening to them.
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Indeed, the pandemic has taken its toll. According to initial results from an international survey of children and adults in 21 countries conducted by UNICEF and Gallup, which are featured in the State of the World Report 2021, an average One in five people aged 15-24 surveyed said they felt bored or had little interest in doing anything.
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