By David Tuller, DrPH
Much has already been written about Alan Levinovitz’ 7,600-word love poem to the potential healing powers of so-called “mind-body” interventions for Long Covid. Wired published the article last Monday under the title “The Painful Truth About Long Covid.” As the word “painful” suggests, the epic is also infused with darker notes. These involve an unhinged online commando of very scary sick people creating “a climate of fear” and seeking to destroy science by terrorizing mind-body practitioners and those who report positive experiences with these programs.
Hm. Have the movie rights been sold yet?
Actually, it turns out that the article is part of Levinovitz’ forthcoming book, which is called “Demons by Another Name: Biology, Belief and the Stories That Make Us Sick.” Gee, I wonder what it’s about??? Perhaps its premise might help explain why this article reads as if Levinovitz is straining mightily to interpret patients’ experiences in ways that conform to a preferred narrative while disregarding well-documented examples of research misconduct.
Levinovitz is a professor of religion at James Madison University, a well-regarded public educational institution in Harrisonburg, Virginia. According to his JMU page, his research “focuses primarily on the relationship between religion, literature, and science.” In 2021, he wrote an excellent article on Long Covid for VICE. I was quoted in that article, and I was quoted in this one—both times accurately, which is no small thing! I’ve made comments online about the new Wired piece, not all of them negative, but this is my first post about it, and likely not the last.
(In fact, while I was quoted accurately, Wired got my job title wrong, referring to me as a “lecturer” at Berkeley, which I haven’t been for years, and not “senior fellow,” which I am. While I appreciated that Wired fixed the error, I was surprised at the absence of any indication that a correction had been made.)
“Mind-body” or “brain retraining” interventions generally include a goulash of non-medical components, which can include meditation, cognitive behavior therapy, body awareness exercises, positive affirmations, relaxation techniques, Buddhist and other Eastern philosophies, and so on. Popular examples of these programs include the Gupta Program, the Dynamic Neural Retraining System, Internal Family Systems, and—in the UK and Scandinavia—the Lightning Process. The individual elements of these programs tend to be more or less benign, and some people report subsequently experiencing dramatic upswings in their health.
A major problem, however, is that the programs’ websites and promotional materials generally make grandiose promises, presenting them as a sure-fire cure-all for an amazingly wide range of complex conditions. The Gupta Program, for example, is “designed to reverse chronic inflammatory conditions, anxiety, burnout and restore the life you deserve.” Here is the list of conditions, or categories of conditions, it claims to treat: ME/CFS, Long Covid, Lyme Disease, Irritable Bowel Syndrome, Certain Autoimmune Conditions, Mold Illness, Mast Cell Activation Syndrome, Multiple Chemical Sensitivities, Chronic Inflammatory Response Syndrome, Small Intestinal Bacterial Overgrowth, Drug Withdrawal, Electrical Hyper Sensitivity, Fibromyalgia, Dysautonomia, Anxiety/Panic, Burnout, Pain Syndromes/Migraines, Postural Orthostatic Tachycardia Syndrome.
Is that all?
These expansive claims are evidence-free; no one should believe them or take them at face value. But many patients do believe them and are crushed when they don’t get better—or when they get even worse. At the same time, compelling and seductive anecdotal accounts of improvement and recovery are posted by the dozens or hundreds on such sites.
In the roiling online debate over “The Painful Truth about Long Covid,” I challenged some of Levinovitz’ assertions. I also defended him robustly over two particular issues. First, whether it was appropriate to invoke his child in advancing arguments against the article. Second, whether a particular phrase—“there is no ‘Long Covid’—should be interpreted to mean he is denying the existence of Long Covid or simply arguing that Long Covid is not a single clinical entity. Quite a few patients who generally support my work strongly rejected my position on both matters.
(After engaging over these questions, I saw a Levinovitz comment on X, posted more than a year ago, about his belief that “60-80% of Long Covid is explicable” as “psychogenic symptoms/illness.” The post re-surfaced last week during the brouhaha over the Wired piece. As far as I know, there are no reliable data to support this statement. The post doesn’t indicate the source of the estimate, and the statistic is not repeated in the story itself, so I don’t know if Levinovitz still believes it. In any event, it is my belief that his belief was and is nonsense.)
Levinovitz is a graceful writer and the piece is definitely absorbing to read. He quotes several opponents of mind-body interventions and the so-called “biopsychosocial” school. He also makes some important points, such as highlighting the way that so many patients with these conditions have been poorly served and indeed harmed by the medical system for many years. But that doesn’t mean he draws the right conclusions from his investigations, and both he and Wired make some questionable journalism choices.
With that said, here are some overall thoughts. (I meant this post to be relatively brief, but it grew to 3000+ words. I know that, given cognitive limitations, many will not be able to make it through the whole thing. I’m sorry!!)
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The Truth according to Levinovitz and Wired
*Let’s start with the headline, which declares that Levinovitz is presenting “The Truth” about a medical condition no one has yet cracked. That’s a revealing choice of words. Biblical literalists, fanatics in other religious traditions, and Trumpistas all lay claim to The Truth. It behooves others, even professors of religion, to refrain from such declarations. In this case, the implication is that the article’s content is irrefutable. That stacks the deck against anyone seeking to challenge it.
Per tradition and practice in US journalism, editors have generally been the ones to set headlines and sub-titles. But this is a 7,000-word epic in a high-profile publication. It is possible, but seems unlikely, that Levinovitz had absolutely no opportunity, either before or after publication, to protest a headline that implied he was presenting us with the Ten Commandments. Some readers might be eager to read about The Truth. But the words suggest an inappropriate level of certitude, on Wired’s part if not Levinovitz’, that casts a shadow over everything that comes after.
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Everything old is new again
*Then there is the sub-title: “There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.” “Finally?” I guess Levinovitz hasn’t noticed that “talk” about this stuff is all over the place and has been going on for years, even decades. Pooh-bahs promoting the biopsychosocial approach exercised hegemony over the discussion of treatments for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for 30+ years. Citing vile social media posts and private communications, they have long portrayed the community of desperate patients as an irrational and dangerous mob of anti-science zealots–a notion revived by Levinovitz.
In fact, the current discussion over Long Covid and mind-body approaches is an extension and amplification of these long-standing tensions. In the UK and Europe, Long Covid patients routinely report that their government or private doctors and clinicians, at a loss for how to help, have recommended that they pursue mind-body strategies. The notion that no one is talking about it is pretty ridiculous—a non-starter. But it allows Wired and Levinovitz to present themselves as prophets leading patients out of the biomedical wilderness.
Like the headline, the sub-title language is prejudicial. Whatever role Levinovitz did or did not have in concocting the phrase, he is nonetheless stuck with it–just like he is stuck with the headline. Levinovitz has repeatedly praised the rigor and professionalism of Wired’s editorial processes. But if the magazine’s editorial team has settled on language that contradicts the context of the article, as seems to be the case, then it is reasonable to question whether its editorial approach is indeed rigorous and professional.
In my experience of writing long pieces for major news organizations, editors have always been willing to adjust or correct a headline or sub-title if I offered a cogent explanation of why one or the other was unacceptable or misleading, for whatever reason. If Wired is unwilling to extend the same basic courtesy to Levinovitz, perhaps he should reconsider whether he wants his work to appear in a magazine that undermines his work in the first words readers will see.
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Omitting the voices of “mind-body” intervention failures
*Unlike some critics, I have no issue with presenting the stories of people who reported that they have improved or recovered after pursuing mind-body treatments. To his credit, Levinovitz acknowledges that such anecdotes are not evidence of anything except that individual’s experience. But the piece suffers from his decision to offer no testimony from even one among the masses of patients who have tried these sorts of interventions and report that they did not improve, or appeared to improve for a period of time before suffering a serious relapse, or got worse during or immediately after their participation in one of these programs.
A few years ago, I wrote a scathing piece about the Lightning Process, which was created by one-time faith healer Phil Parker, who is now an osteopath and psychologist. A short bio on a site devoted to a spiritual healing course Parker once co-taught noted that he “developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results.” Ok, then!
In my story, I centered the accounts of patients who reported enormous setbacks after their Lightning Process sessions. However, I also included two accounts from people who reported remarkable improvements. I didn’t mock them, dismiss them, or accuse them of having made the whole thing up. I did indicate that science couldn’t account for what happened, given current levels of knowledge. The presence of those testimonies strengthened the credibility of the overall article.
On social media, Levinovitz has made the point that the Wired piece was about those who reported improvements, not about those who didn’t, and he noted that he had mentioned the existence of these cases. Indeed, the article reported that “many patients have posted harrowing personal testimonials about losing their money to these programs and being made to feel like they were to blame for their symptoms,” with a link to a set of what could be called Lightning Process anti-testimonials. Good for him. But, in my view, that is insufficient. In a 7,600-word piece, the absence of even one concrete account from one specific individual amplifies the bias implicit in the headline and sub-title.
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Case definitions you could fly a plane through
*Levinovitz is 100% right that major case definitions of Long Covid are extremely porous; in some cases, you could fly a plane through them. That makes research challenging and, if not well-designed, uninterpretable and meaningless—not to mention a waste of limited research funds. But that doesn’t mean little useful has been learned about pathophysiological processes, as Levinovitz seems to think. Smart researchers have understand for years that sub-grouping Long Covid study populations by phenotype will be critical to success.
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Blaming patients for a social media problem
*As Levinovitz notes and as should be self-evident to every sentient being, mind-body practitioners should not be abused, harassed, or threatened, and patients who attribute improvement or recovery to mind-body programs should not be dismissed as lying or having faked their illness. But every controversial debate online is toxic, and this one is no different. It is important here to remember Godwin’s Law of Nazi Analogies: “As an online discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches one.” In other words, online discussions always end up in the sewer.
Mike Godwin, a lawyer specializing in internet-related issues, unveiled his eponymous “law” in the 1990s. Given the explosion of social media, the deployment of algorithms designed to ramp up engagement and emotions, the trumpification of public discourse, and the Musk takeover of Twitter, the proliferation of horrible online behavior has accelerated in recent years. Onslaughts of abuse and harassment are an internet phenomenon, not one particular to Long Covid patients or the Long Covid community.
Randos who spew out demented or threatening posts represent only themselves. They do not represent groups of patients. Levinovitz seems to believe otherwise—or at least that is how it comes across in Wired.
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Intellectual myopia and unhinged mobs
*Levinovitz is right that biomedical research into Long Covid has been fraught with problems, for any number of reasons. But he refuses to cast the same critical eye on the self-evident methodological flaws in the biopsychosocial literature. Instead, he takes a “they said, they said” approach—as if he can’t decide whether it is kosher for trial participants to be “recovered” on key variables at baseline, as they were in PACE. (Hint: It isn’t.)
Levinovitz seems too smart not to recognize that PACE and related studies are crap, so I am mystified by these striking examples of intellectual myopia. But that myopia helps explains why he insists that patients reject biopsychosocial interventions because they need their illness to be explicitly biological in order to feel like it being taken seriously and not treated as “all in the mind.” In other words, per Levinovitz, patients feel a deep emotional need to protect a narrative of pathophysiological dysfunction rather than accepting any implication that their illness has anything to do with psychological and mental health issues.
That might be the case for some. But a great many patients reject the biopsychosocial approach because they have tried cognitive behavior therapy and rehabilitation and exercise programs and experience them as useless at best, or harmful. They also recognize that PACE stinks—it’s a piece of crap, like I’ve always held—and that many related studies of ME/CFS and Long Covid suffer from similarly egregious flaws. Levinovitz rejects these assessments; at least, the Wired story includes no discussion of the methodological missteps of PACE and other studies.
Since Levinovitz fails to grasp the real reason why so many patients reject these therapies in the first place, he replaces their narrative with his own interpretation of their motivations. To him, patients’ understandable rage looks like the hysterical rantings of an online army. One of the many responses to the Wired article, an essay by Fred Rossi, an Australian psychotherapist and CBT specialist who is now a patient, makes this point succinctly:
“So the community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way.”
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The all-purpose construct of “neuroplasticity”
*Having framed the biomedical approach as unlikely to produce solutions for many or most patients, Levinovitz pivots to mind-body programs that promote the trendy construct of “neuroplasticity.” I don’t know that anybody seriously rejects the importance of neuroplasticity as a phenomenon. But simply invoking neuroplasticity as an explanatory model should not give body-mind proponents a free pass to declare that whatever mish-mash of modalities they have cooked up can cure pretty much any condition that they think should be attributed to a frazzled nervous system.
Levinovitz never claims that mind-body approaches have been proven to work. But beyond quoting a couple of counter-opinions, he doesn’t delve into the theory behind them—that these illnesses arise “when the brain gets stuck in a feedback loop of fight or flight,” leading to “nervous system dysfunction.” Becca Kennedy, a physician in Portland, Oregon, who left Kaiser Permanente to set up a private practice specializing in mind-body approaches, told Levinovitz that “now we have the neuroscience to understand these symptoms.”
What new neuroscience is that? How does it prove that a “feedback loop” of some kind is generating symptoms? I don’t know. Levinovitz does not provide any information about that. While decrying the fact that patients are seeking out unproven medications and risky surgeries in an effort to gain relief, he seems to have no concerns about patients pursuing unproven non-medical interventions.
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What’s the name of that thing again?
*Levinovitz describes how diagnoses falling under the umbrella of “post-acute infection syndromes” can be “a terminological minefield,” adding that the “the most common designation, and the one used by the Centers for Disease Control and Prevention, is ME/CFS, which stands for ‘myalgic encephalitis/chronic fatigue syndrome.’”
In fact, a cursory check of the CDC website reveals an elementary error. The agency does not use the word “encephalitis” but “encephalomyelitis,” which means something slightly different. Apparently the rigorous and scrupulous fact-checking department at Wired failed to catch this mistaken reference to the name of the illness that, along with Long Covid, is at the core of the piece. (The error has been corrected. Like the change in my job title, the correction is not indicated. Hm.)
It is easy to make minor mistakes like this, however embarassing to the journalist involved. No one should interpret them to mean anything other than that someone slipped up. I’m certainly very capable of these sort of lapses. Years ago, a New York Times story I wrote required corrections in three separate places. (My editor warned me to make sure the corrections were accurate in order to avoid having to then correct the corrections.) But the whole point of having a fact-checking department is to catch these things before they appear in the published version.
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Levinovitz disappears key mind-body clinical trials
*Levinovitz calls for robust research into mind-body interventions. But he fails to mention two major clinical trials that pertain directly to his argument—a perplexing omission.
In 2017, Archives of Disease in Childhood, a Lancet journal, published a major British trial of the Lightning Process. The investigators failed to mention that they recruited 56% of their participants before registering the trial. Moreover, the investigators swapped their designated primary and secondary outcomes at that time, while falsely reporting the trial as 100% prospective. Thanks to me (and to a secret source who contacted me about the trial’s breathtaking methodological lapses), the Archives paper now carries a 3,000-word correction. It was also slapped with a 1,000-word editor’s note explaining in tortured language why it wasn’t retracted.
This is all fully documented and easy to find. Levinovitz doesn’t entertain the self-evident possibility that many patients might reject mind-body interventions, as they do more standard biopsychosocial therapies, because they have become aware of such fraudulent research practices. Providing information about the 2017 paper might have forced Levinovitz to acknowledge that there is some rationale for people to distrust those investigating and promoting these programs.
One could argue that the Lightning Process trial was published almost a decade ago, and therefore less relevant to the current context. But Levinovitz also ignores an ongoing Finnish study of the Gupta Program. (The study was presented as focusing on “amygdala retraining,” whatever that means.) Last year*, that trial released an interim report noting that “preliminary analyses based on patient-reported outcome measures indicate no signficant differences in effectiveness between the intervention arms.” (*In this sentence, I originally wrote that the Finnish interim results were released “recently.” A year ago is not that recent. I apologize for the error.) Perhaps if the results had been positive, they would have made their way into the Wired article.
So what happened here? Levinovitz has said he worked on the article for a year and declaimed about his vast knowledge of the literature. Does that mean he knew about these trials and thought they weren’t worth mentioning? If he didn’t know about then, why didn’t Wired’s fact-checking department unearth them?
Journalists have an obligation to include information that appears to raise questions about their assertions and conclusions. They can then rebut that information if they choose. Levinovitz could have argued, for example, that the disastrous Lightning Process study was actually not so bad because of x, y and z. Regarding the Finnish study on “amygdala retraining,” he could have argued that it was necessary to wait for the final results in order to make a fair and full assessment.
But Levinovitz did none of those things. Instead, the Wired article disappeared these two key research projects. When it comes to reporting on mind-body clinical trials, Levinovitz and Wired failed this particular test of journalistic responsibility and integrity.
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I could go on. And I likely will! In the near future, I hope to post more blogs that explore one or more of these issues, or others related to the Wired article. Stay tuned.
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An important programming note
I have never hidden the fact that I crowdfund to support my position at Berkeley, and that most of the donations—which go directly to the university, not to me—come from patients. That is clearly a reportable conflict of interest. I have routinely been criticized for it and accused of being a shill—not least in this 2019 PACE propaganda piece from Reuters. (In that instance, as with the Wired article, I immediately alerted the publication that my academic position was not properly described.)
I assume this vein of criticism, as well as other accusations, are likely to resurface in the course of this debate, along with the Reuters article. My response has always been this: Tell me what facts I got wrong, and I’ll correct them.
Thanks for warning us about the length of this
Thanks for the run down on this, David. I’m afraid I don’t have time in my busy schedule for anything from this particular author but your blogs are always an enlightening and entertaining read.
I see this as another example of the harm caused when patients aren’t thoroughly screened in order to stratify into distinct groups.
Lumping multiple patient groups under one label & one diagnosis code means different kinds of patients end up being compared to each other.
We saw similar when the CFS patients who could safely exercise were lumped together in research with those who deteriorate from exercise.
Those who improved from exercise didn’t understand why someone with the “same disease” didn’t want to exercise their way to health. Drs who saw recovery from exercise became hostile to those with the “same diagnosis” who became worse from exercise.
It brings up the question about why patient advocacy groups have been involved with lumping multiple groups under one label and diagnosis code. This “ME/CFS is one disease” narrative has led to understandable internal divisions among patients.
Of course those who benefited from a treatment will promote it. And, of course, those who find it harmful will try to warn against using it.
I am frustrated that patients who don’t have what I have are researched as if they represent me.
Long Covid diagnosis is making the same errors we have seen for decades in the ME community.
It’s hard to watch this same mistake repeating since it leads to so much harm for severely ill patients.
(This comment originally posted in response to Amy – The Tonic substack post about this Wired article)
Many thanks for taking this on. I lose too many spoons when I wade into it. I couldn’t even get through the first paragraph, since he equates a population survey (for the UK) with prevalence rates following C19 infections in selected other countries. Very different measures…. All to make his point that “nothing about Long COVID adds up…” Another strike against the WIRED fact checkers.
Thank you for posting this in-depth piece repudiating a great deal of what appeared in the Wired article. In the many years since I wrote for that publication, I have noticed that fact checking and copy editing have largely been in decline at many organizations. Sometimes this places undue burden on the writers ourselves. We are but human and we need additional input before publication.
As is common with the reporters and doctors who wade into this complex subject believing that they know the truth, patient experience is given short shrift in favor of expounding, getting clicks, etc.
Nearly all their complaints typically echo what the medical establishment believed for many years about women’s health, the baseline realities of how hormones affect all aspects of wellbeing, and of course, what is now called multiple sclerosis (MS). Their usual excuse is science, when decades of medical research left women out of the picture altogether, ironically because of those very same hormones possibly screwing up their experiments, which were largely conducted on white men (except the more terrifying and unjust experiments wasted on people of color, again particularly women).
So it does strike one as rather hypocritical that the same types of people come forth with unscientific views about alternative therapies. I have been diagnosed over the years with ME/CFS, fibromyalgia (the more usual diagnosis of choice given fascia and pain issues), and more recently I experienced Long Covid. I still have some recurrences of what I recognize as Long Covid. Some symptoms are similar to ME/CFS and fibromyalgia. Others started up specifically when I had a bad case of Covid, and continued in a heightened form over the course of four or five months. After that, the Long Covid symptoms recurred less frequently and I assume I am still getting better, though they popped up every now and again.
I repeat, the symptoms are not the same as ME/CFS and fibromyalgia. Am I inventing the burning pain in my hips? No. I am in physical therapy for that, and now that the Long Covid is less intense, I am able to actually do the physical therapy exercises, which help. Would meditating on my neuroplasticity cure this pain? I don’t know — would meditation cure a knee injury patient recovering from surgery? It might help them feel better about being temporarily disabled and having to do PT, I guess.
Am I inventing the strange behavior of my heart and shortness of breath, when they occur? No. And so far, no one has been able to help me with that, and the usual imaging and diagnosis procedures haven’t turned anything up. Do we normally treat heart and lung patients with unproved meditation and alleged neuroplasticity exercises? Uhhhh…that would be a no.
Multiple sclerosis: all in your head. PMDD and hormone loss and life-altering symptoms of the menopausal transition: all in your head. Right?
Perhaps we should bring out the leeches along with neurotraining.
Speaking of copy editing, due to pain that we might call fibromyalgia or we might call something else, I am having to dictate these responses and I don’t always catch the crummy inaccuracies. I also want to add one substantial opinion to what I wrote in the previous post.
1) terrifying and unjust experiments wasted on people of color — I did not say “wasted on” and I am disturbed that my computer introduced that weird error. Please strike “wasted” in your minds!
2) “[Long Covid symptoms] popped up every now and again” should read “My [Long Covid symptoms] still pop up every now and again.”
3) I should have mentioned that I am in favor of various alternative therapies and have actively engaged in many of them over the years. At certain times, with certain practitioners, they genuinely help me manage symptoms and feel better about the whole desperate process of being ill. I hope I don’t come off as being opposed to trying everything from acupuncture to CBT to more woo-woo techniques, not to mention the highly effective technique of avoiding moldy environments and exposure to certain chemicals. I love this stuff, and don’t love that many in the medical and science industries dismiss it out of hand. But I am afraid that these techniques and therapies aren’t available where lots of affected patients live or under their insurance policies, or are otherwise not feasible in their lives. These techniques and therapies certainly don’t cover all the bases for helping us recover or at least have swaths of time during which we are better able to function.
It sounds like regurgitated modern take on Elaine Showalter’s Hystories, if anyone remembers that.
Just because you can write a book doesn’t you should.
So much to say about this article and the discourse. Thank you for your thoughtful contribution.
My thoughts:
Re: the headline, it’s almost certain that Levinovitz had nothing to do with the headline, and a writer who throws his editors under the bus is a writer who won’t get work again.
There are patients and scientists quoted in the story who say they are afraid to talk or have been silenced. Yet the critics of the story just keep acting like they don’t exist or coming up with excuses for why it’s actually not so bad as they say. At least you’re able to say that abuse and harassment is bad. Most of the backlash to the article doesn’t even say that. Which ends up reinforcing one of the points Levinovitz makes.
Agreed that Levinovitz undersells/elides what’s been learned about pathophysiological processes. That’s a big problem.
He also should have talked about the neurobiological evidence for the idea that some subset of long covid patients have a neurological or nervous system condition that was triggered by viral exposure (or by viral exposure + environmental factors in the case of the long-covid-as-malfunctioning-brain-predictions theory). It would have made his story stronger. But I’ve also noticed that critics of the story ignore that science too. Which, again, reinforces Levinovitz’s point that this has become a religious/tribal fight, not a scientific one.
I’ve also noticed that many critics of the story argue that exercise is an unequivocally bad therapy for people with long covid, and that there’s no science to suggest otherwise. Again there is research on that, and both concluded and ongoing clinical trials. (Which Levinovitz too could’ve done more to describe.) I’m not saying the findings are powerful or that they suggest a therapeutic route for more than a subset of patients—but they exist. Which makes me distrust the scientific judgement of the long covid patient advocates I’ve read.
To me it seems like what Levinovitz is arguing for and what the mainstream long covid community is arguing are not mutually exclusive at all. My best guess is that long covid is a big-tent term; it covers multiple subsets of people with different etiologies, some explained by ‘biological’ mechanisms and others by ‘biospychosocial’. (I use the quotation marks not to imply skepticism but because both those terms encompass biological, neurological, and social dimensions. They’re just shorthand.) Both explanations can be true.
It feels like the long covid community—very understandably—is so sensitive to their disease being characterized as “all in their heads” that they’re unwilling to acknowledge the biopsychosocial possibilities. Many critiques to Levinovitz’s article were either bad-faith or blinded by this sensitivity; the article had flaws, but it was clearly not saying the condition was “in patients’ heads” in the way people mean when they say that. Meanwhile I’m sure there are plenty on the biopsychosocial side who are just as unreasonable, I just haven’t read them.
I just hope we get to the bottom of this soon and the people who need help get it.
I have a great deal of respect for Colleen but I must disagree about the lumping thing. Lumping is a legitimate scientific practice, long favoured by some of our best researchers, including (if I remember correctly) Dr Nancy Klimas.
Obviously and undoubtedly, subgroups will appear as research continues and I think many researchers already recognise approximately 6 semi at present. Not quite enough evidence for researchers to state that out loud though it seems.
The analogy I like to use is cancer – once upon a time there was only one cancer.
It took money, time and commitment to uncover melanoma from gioblastoma from leukaemia. So it will be with ME.
Also I don’t remember any patient genuinely diagnosed with CFS as not having PEM. CFS was a literal rebranding of ME.
Does Alan also put CPET (cardiopulmonary exercise test) data in the same epistemology category as Santa Claus?
Im just here to add cpet data–literal data showing our bodies smother themselves when we move and we are often physically limited to 1-2 METs (metabolic equivalents) the way severe heart failure patients are –only if they dont die they usually improve with exercise and we just half die into physiological purgatory.
Anyway just a cheerful addition to the list of:
Microclots and hyperactivated platelets
Brain inflammation
Endothelial dysfunction
The itocanate shunt hypothesis
The bot one but TWO animal models SolveME/Summary habe built
Oh and
DecodeME the landmark stufy proving ME is GENETIC!
Who wants to rub Alan’s ugly sellout nose 👃 in ALL OF THIS DATA since he apparently doesnt have google and cant read??
There are so many professionals who “read” psychological meanings into unexplained physical symptoms. In order to interpret a patient’s unconscious emotional defence mechanisms a long training is required, including training therapy. Training therapy is necessary because we all have emotional blind spots and those wishing to work in analytical and psychodynamic therapy need to resolve their own blind spots otherwise these can influence the therapist’s perception of the patient’s emotional defences. For decades these therapies were dismissed by main stream medicine but now are used to explain symptoms by practitioners who have not been trained in the highly skilled process of interpreting unconscious material. A qualification in medicine, psychologist, nursing , occupational therapy etc is NOT a qualification to practise interpretation of unconscious material. More over, a well trained psychotherapist relies on medical evidence that there is no physical cause for the symptoms before considering psychological causes.
Another thing to remember is that people can have psychological issues before they become physically sick, and disability itself can cause psychological distress/ symptoms, so whilst psychological treatments can and do help physically ill people, it is important to to recognise the difference between a primary and secondary symptom.