By David Tuller, DrPH
What is it with the health care establishments in northern Europe? Why are they so devoted to non-evidence-based approaches to treating serious medical conditions? Why do they trust arguably fraudulent research, like the PACE trial and Professor Esther Crawley’s pediatric Lightning Process study? Why are the authors of these studies respected and even esteemed among some high-level circles in these countries?
The mind boggles.
The latest on this front is an upcoming gathering in Finland that provides a platform to leading lights of the CBT/GET/’amygdala retraining” ideological brigades. Sponsored by Helsinki University Central Hospital (HUS) and scheduled for March 16th, it is called “Navigating the Unknown: Exploring Realities and Best Practices for Long Covid.”
Here are some of the questions the conference promises to explore: “What is the difference between long Covid and Post Intensive Care Syndrome? What are the relations of Long Covid and chronic fatigue syndrome (ME/CFS)? Are there some risk factors for developing symptoms of Long Covid?” Well, that all sounds reasonable enough.
Then there’s this: “This symposium will focus on the bio-psycho-social aspects of this disorder.” Uh, oh! More biopsychosocial propaganda.
Millions Missing Finland, an ME/CFS advocacy organization, has tweeted concerns about the gathering. In a thread that highlighted the problematic views of most of those presenting, the organization noted that “we find the speaker list peculiar and worrying.”
The list of speakers is indeed problematic but not surprising.
A prominent HUS physician, Helena Liira, is opining about “the Finnish experience from the Long Covid outpatient unit.” Dr Liira and I exchanged e-mails last year after I criticized a clinical trial for which she is the lead investigator. The trial, sponsored by HUS, is studying an intervention for people with “functional” disorders, including long Covid. The intervention is described as “amygdala and insula retraining”–even though the study includes no effort to measure anything related to anyone’s amygdala or insula.
Dr Liira is essentially running a trial of the Gupta Program—one of the multiple mind-body approaches currently being marketed to people with chronic illnesses, including long Covid. The eye-catching claim—that amygdalae and insulae are being retrained–is solely a marketing device derived from grand-sounding but largely meaningless speculations about the brain by the Gupta Program’s founder, Ashok Gupta. Whatever might be happening, there is no evidence that any amygdalae or insulae have undergone retraining.
Dr Liira and the ethical review committee that approved the study apparently see no problem with describing an intervention as purporting to involve something as complex as “amygdala and insula retraining”–even though this has zero to do with the study itself. They don’t think this sort of promotional hyperbole can possibly bias any of the study subjects. I disagree. Since the trial is already flawed for multiple reasons, as I discussed here, this nomenclature issue simply further undermines the credibility of any findings.
Professor Sharpe is having a Norma Desmond moment
Also on the Helsinki conference schedule is Professor Michael Sharpe, one of the lead investigators of the PACE trial. Professor Sharpe frames legitimate criticism of his disastrous study not only as “harassment” but as an attack on Science itself. Whatever. The relevant point is that PACE and its GET/CBT approach have been rejected by the US Centers for Disease Control and Prevention, the UK’s National Institute for Health and Care Excellence, and other leading health agencies. The PACE trial has been used as a pedagogical tool in epidemiology graduate seminars at UC Berkeley–as a case study in awful, unethical research. And 100+ experts from around the world signed Virology Blog’s open letter to The Lancet about PACE’s “unacceptable methodological lapses”–as reported in The Times and BMJ.
Nonetheless, this Oxford don is having his Norma Desmond moment! (Watch this clip from the Hollywood classic Sunset Boulevard if you don’t know what I’m talking about.)
Besides his upcoming appearance in Helsinki, two major features in high-profile US publications—New York Magazine and The New Republic—recently included respectful interviews with Professor Sharpe. The articles presented long Covid as largely a “functional” or psychosomatic disorder and allowed Professor Sharpe to spout some of his standard self-serving slop. Apparently the journalists believe it is fine for a study to include participants who were already “recovered” on key outcomes at baseline–as was the case in the PACE trial. Apparently the organizers of the Helsinki conference agree. Enough said.
And then we have Professor Paul Garner discussing “how to recover from long covid.” It has been surprising to watch the entire BPS world, which claims to care about evidence-based medicine, accept one person’s illness narrative as proof that everyone should be able to cure themselves with strong manly thoughts—just like Professor Garner. I wrote about him here.
A psychologist from Bergen, Norway, Professor Gerd Kvale, is offering a talk on “concentrated treatment” for long Covid. Professor Kvale and colleagues have developed a three-day rehabilitation program, conducted in small groups, involving “a combination of teaching, individual conversations and physical activity and training.” And this: “Understanding and acceptance of the health challenges combined with techniques that aim to increase flexibility and activity are important. In particular, emphasis is placed on recognizing and getting help to break patterns that can contribute to maintaining the ailments.”
Hm. Sounds like a concentrated program of CBT/GET to me, perhaps with a little amygdala and insula retraining thrown in.
Avindra Nath, who is intramural clinical director of the National Institute of Neurological Disorders and Stroke at the US National Institutes of Health and a leading long Covid investigator, is giving a remote presentation called “What is long covid?” Dr Nath’s participation in the event has generated some comment and discussion on social media. Given the conference’s frank embrace of the biopsychosocial approach, his appearance could be seen as lending legitimacy to this overall orientation. To counter any criticism, the organizers could point to Dr Nath’s appearance, and maybe that’s why they invited him.
On the other hand, there’s value in injecting some scientific and biomedical realities into this slate of presentations. Perhaps Dr Nath’s talk will highlight enough hard facts to inoculate at least some audience members from buying into the psychosomatic framework that will otherwise dominate the proceedings.
In any event, among those who care about serious science in this domain, the conference certainly risks damaging the medical center’s international credibility and reputation. Sad.
18 thoughts on “Trial By Error: An Upcoming “Biopsychosocial” Long Covid Conference in Finland”
I hope they’re cycling to Finland, in the name of saving the planet ‘n’ all.
I enjoyed your use of the ‘Whatever’ 🙂
I’m boggled too.
But ‘manly’? I’m not sure ‘manly’ is ‘evidenced based’ is it? 😉
Thank you David. And thanks for your tenacity throughout this life-long quest you’ve adopted,,,, on behalf of so many of us!
The answer to your initial question WHY?: Money. BPS is MUCH cheaper than actually taking care of the needs, medical and income, of sick people.
With the added bonus that if the sick people get no better, or worse, and quit, you blame their lack of recovery on them – and cut their income because they didn’t follow doctor’s orders. Or maybe they get sick enough to leave this mortal coil – and you don’t have to pay them anything any more.
You had me at ‘leading lights’.
Problematic that Nath is speaking at this excuse for a conference. So sorry for the Finns to have to endure more of this dangerous nonsense.
Thank you for your informative blog post. From a Finnish lc patient’s point of view, this sounds all too familiar. The biopsychosocial treatment feels like a cult; I’ve been their “patient” for two months (after six months of waiting in line) and the result has been constant anxiety-inducing gaslighting, not listening to my hopes or needs, and promoting for example the DNRS program. The message is, “you need to believe in this or otherwise you won’t get better, if you don’t get better, it’s your fault”. I came looking for help for fever running up and down, heart palpations and a way to get back to exercising, I’m receiving medical gaslighting and snake oil. It feels rather hopeless.
I think there is a real issue with ethical review bodies as they appear to approve quite questionable research. Is it a matter that the review panel just do not question academics when they are bringing large sums into the academic institutions or is it a matter that they really don’t understand the ethical implications of bps led studies?
Wow. They are so desperate for work in the Long Covid field aren’t they?
Amygdala training with no measure is definitely not scientific, how does this go unchallenged?
Talking of harassment – Have you seen the latest Garner article? He is claiming to have had death threats, that’s how the article kicks off anyway. Also, claims he is a champion for M.E. Plus, we pwme are holding back Long Covid patients from recovery.
I’m staggered by the fact these people can say the things they do and get away with it.
Thank you for shining a light on this.
March 15th is LongCovid Awareness Day.
March 16th is the Conference.
It’s not a coincidence. It’s by design.
That means a coordinated the lies and propaganda British media machine will rev up its engine to turbo that week using Nath as the prop to segway into American media as well. (just like Sharpe always quits and whines at the exact same that ME/CFS biomedical Conferences announce potential biomarkers for ME/CFS – you can set your watch by it now)
If someone with means and research skills could dig into the financials of who is behind the funding of that conference……and who pays for that incoming media push.
Please look behind and beyond the curtain.
Nath being there is what the NIH really thinks.
Garner and Sharpe aren’t worth the paper their degrees are printed on. An N=1 with magickal thinking than the elder scrolls online and a washed-up professor who should have been fired long ago because of low-quality dangerous and harmful research. — who would even want to share space with them if they love the scientific method?
Not a surprise from the NIH.
Nath should have ripped up the invitation if he had any common sense or any respect at all for ME/CFS and LongCovid patients.
Not really a surprise from the NIH which doesn’t take ME/CFS or LongCovid seriously.
That should say “Garner has more magickal thinking than the elder scrolls online” – re:Garner. Sorry – ME/CFS cognitive impairment. 🙁
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Thank you!! Very well!
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I’ll read your stuff more frequently, I swear. When you have some free time, I’d love for you to join me in playing the game geometry dash meltdown, which I just recently discovered.
Hello, I am another lc patient in Finland and could not agree more to your article. It has been mind boggling to witness how lc is treated here. I am from another EU country, so was able to see in the news and support groups how lc was treated every where else. We have ONE advocate in Finland, a retired neurologist, who dares to counteract the Helena Liira opinion openly. He has said on numerous occasions that Finland is the only country which treats lc as a non biological illness. Go figure. Liira must have a huge lobby behind her and yes, it’s all money. It is cheaper to encourage patients to buy the 300 Euro Gupta program than to actually sit down and figure out what is REALLY happening. My experience is identical to Amanda’s, total gaslighting. None of my friends abroad is actually believing this as Finland is known to be an advanced and technologically driven society…All I can say is that the way Finland has been and is treating lc is resembling a scandal. When entering either lc related clinic (there are two), one is immediately told that everybody who has been a patient in these clinics has recovered with no proof, whatsoever, given to the patient. My doctor there gave me the impression that he was only interested in me when recovering. I was not recovering, though. Now my outpatient status there has been put on hold, as a consequence. What disturbed me most is that I saw zero medical interest during the almost 3 years I have been sick with this now. Gaslighting and complete ignorance, yes, but absolutely no medical interest.
Hi, Im also long covid patient from Finland. I was actually never accepted to finnish LC clinic, referrals made by my GPs have been twice returned by the Liira’s clinic appealing to overcrowding. This is the case for majority of LC patients in Finland. But it seems that the ones accepted to this clinic are not any better off.
Questionnaire made in the finish LC support group showed absolutely ridiculous success rate for Finland’s Long Covid clinic. Zero procent claimed to have fully recovered in their treatment, 3% claimed they have slightly recovered in their treatment. The vast majority have not received any relief from long covid clinic and and even larger group has not been accepted to this clinic.
Most long covid sufferers in Finland are pretty much left to their own devices to cope and recover, local and international support groups being their best sources for information about latest research, personal trials and possible tools for recovery. GPs generally having very little knowledge about LC and Liira getting most of the airtime in the rare occasions that Long Covid gets any coverage in media is ultimately resulting patients getting similar treatment in the health centers as she claims to be the expert in this area.
We do have a neurologist, a head of the long covid council of expert in Finland, working on private sector, who is openly disagreeing with Liira’s approach and by becoming his patients, people have much higher success rate to recovery.
Please, people with status in medical and scientific platform, keep raising questions about the state of treatment of Long Covid patients here and somobody should definately check on the recoveryrate statistics of that clinic because this is not ok. They receive public funding.
Hi, I have been a patient in the Long Covid Clinic in Helsinki. I showed them my positive funktional Autoantibody results, but they told me that they are not harmfull at all and that I will get healthy when I do meditation etc. I didnt get any better. I got more and more symptoms .When I asked for examinations for the heart, SFN and endothelitis they refused that and even finally kicked me out. I went to privat heart MRI and was diagnosed with subacute Post Covid Myocarditis and luckily I went also to that one Neurologist, who helped me with his treatment a lot. Unfortunately most people here in Finland don’t have the money to afford to go to privat, so they are left alone without help. When you are patient in the LCC you also don’t get help from the so called Terveskeskus, as they are saying that the Clinic should take care of the symptoms and if they think that further investigations are not needed then you can’t get them.
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