Trial By Error: Per Fink in New York

By David Tuller, DrPH

Someone uninformed or stupid or maybe both decided to invite Danish physician Per Fink to present at a conference on so-called psychosomatic medicine being held this weekend at Columbia University. Fink—I won’t dignify him by using an honorific–is a scary guy. He should never have been provided with this prestigious platform—in my home town, no less. (I’ve lived in San Francisco for 30 years but I’ve always identified as a New Yorker living in San Francisco—an expat of sorts.) I’m overseas until late October, so I can’t even go to the event and ask him a few pertinent questions about his treatment of people with ME/CFS—or whichever name people choose to use for this disease.

Fink is the most prominent member of the Danish wing of the cult of MUS (“medically unexplained symptoms”), but his pernicious influence reaches far beyond that, as the invitation to this gathering demonstrates. His basic position, as I understand it, is that anyone experiencing persistent physical symptoms for which Per Fink can’t find an organic cause must be suffering from a mental illness. This mental illness might require them—especially if they are Danish–to be sequestered from their families against their will for years.

Moreover, if they reject Per Fink’s recommended treatments they must be suffering not from whatever they have deluded themselves into believing they have but from an obscure condition referred to as “pervasive refusal syndrome”—for which the main symptom seems to be a rejection of Per Fink’s advice. (Can someone please explain to me the difference between “pervasive refusal” and “non-pervasive refusal”? Is “non-pervasive refusal syndrome” also a purported psychiatric illness?)

This weekend’s two-day event for clinicians, co-sponsored by New York mental health officials, is the fourth annual Columbia Psychosomatic Conference. This year’s program is called “Healing ‘Unexplainable’ Pain: Advances in Multidisciplinary Integrated Psychosomatic Care.” Fink’s upcoming appearance has not gone unnoticed by the ME/CFS community. MEAction is organizing a demonstration at 8:00 AM on Saturday. The group has also sponsored a petition demanding that Fink be uninvited. So far more than 9,000 people have signed it.

(I am personally uncomfortable with uninviting people—even horrible people—once they have been invited to talk somewhere. But I understand why others feel differently. Fink is not just giving a speech. In this case, conference attendees can receive continuing medical education credits, which they need to maintain their professional standing. Fink will undoubtedly be offering harmful and unscientific advice to clinicians unaware of his background. So I am sympathetic to the request to remove him from the schedule, despite my own overall uneasiness about such a strategy.)

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Fink has most famously deployed his theoretical approach to MUS or what he often calls “bodily distress syndrome” in the horrendous case of Karina Hansen, a young woman from Holstebro, Denmark. Karina was essentially kidnapped from her family’s home five years ago and held incommunicado while her condition drastically deteriorated. Her case has become a cause celebre among ME/CFS patients around the world.

My friend and colleague, UK barrister Valerie Eliot Smith, has comprehensively documented Karina’s situation over the years on her blog, Law and Health. Her coverage of the situation has been indispensable. It has also put Danish medical authorities on notice that others were and are keeping tabs on their actions. Here is a link to all Valerie’s posts about Karina: https://valerieeliotsmith.com/category/karina-hansen/ 

The following is from a 2016 post on Law and Health:

Karina first became ill as a teenager. After much debate and disagreement between various health professionals, she was eventually diagnosed in 2008 with a severe case of Myalgic Encephalomyelitis (ME). However, as often happens with this illness, the diagnosis was disputed. Her parents continued to care for her in the family home.

Given her vulnerable state and the disputed diagnosis, Karina and her family arranged for her parents to be granted power of attorney on her behalf. At this time, she was deemed competent to make the decision.

In February 2013, Karina (by now aged 24) was forcibly, and without warning, removed from her home in Holstebro, Denmark. This process was carried out by a large team of people consisting of police officers, social workers, doctors and a locksmith. There had been a similar but unsuccessful attempt at removal some months earlier. She made desperate phone calls for help to her family until the battery in her phone died.

Karina was taken to Hammel Neurocenter (described as “The Research Clinic for Functional Disorders”) which treats patients with neurological damage and diseases. It seems that a number of doctors have been involved in Karina’s case but psychiatrists Nils Balle Christensen and Per Fink have dictated the overall course of her treatment.

As is frequently the case with ME patients (in Denmark and elsewhere), Drs Balle Christensen and Fink believe that ME is a “functional disorder” ie. effectively a psychosomatic condition. As a result, their recommended treatments are exercise therapy/physical rehabilitation, psychotherapy, “sensory” (occupational) therapy and psychotropic medication. Whilst these treatments can sometimes help patients with apparently similar conditions (who are often misdiagnosed with ME or – so-called – “chronic fatigue syndrome“), patients who genuinely have ME are very likely to deteriorate with these treatments – often with serious and long-lasting effects.

After her admission to Hammel, Karina was diagnosed with PAWS – also known as pervasive refusal syndrome. This is characterised by a patient engaging in obstructive behaviour which is designed to resist treatment. It is usually applied to children rather than adults and is not a formally-recognised psychiatric condition. It is also tantamount to blaming the patient for the failure of inappropriate or dangerous treatment.

In 2016, Karina was returned to her parent’s care–where she always belonged–but in much diminished health. Moreover, the court appointed a guardian to monitor decisions made about her care and other matters. Earlier this month, the court finally dismissed the guardian, leaving Karina free from the state’s clutches for the first time in years. However, the consequences of the torture she and her family went through at the hands of Per Fink and other health and legal authorities will remain with them for the rest of their lives.

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The website for this weekend’s psychosomatic conference provides the following description of the purported problem under discussion:

Persistent somatic symptoms (i.e., chronic pain, fatigue, gastrointestinal and neurologic symptoms) that are associated with stress are highly prevalent and cause much suffering to millions of people all over the world. “Somatic symptom disorders,” “functional disorders,” “fibromyalgia,” “irritable bowel syndrome,” “somatization,” or “medically unexplained symptoms”–are just some of the many terms patients hear in the medical offices regarding their symptoms. Patients with psychosomatic distress often dwell at the interface between psychiatry and medicine, and can’t find needed help in either discipline. Physicians of multiple specialties often struggle to find ways to help their patients; and we still have a paucity of mental health clinicians trained to provide specialized psychosomatic treatments.

Fink is presenting twice. One of his sessions is called “Bodily Distress Syndrome or Functional Somatic Syndromes: How to diagnose and treat.” The second is called “How to Treat Functional Disorders in Primary Care and General Medical Hospitals: A brief introduction to a training program for family physicians and other medical doctors.”

It is difficult if not impossible to prove or disprove the presence of BDS or FSS or whatever else this diagnosis is called, since the main evidence for its existence as a discrete illness entity rather than just a descriptive term appears to be an absence of identified organic causes. An unknown number of people, of course, might experience symptoms that are delusional or non-organic or generated through some psychological condition. But it is critical to regard such claims with extreme caution and to acknowledge the very real possibility that underlying pathophysiological processes might have simply not yet been identified.

Yet as the description of the Columbia program suggests, those in this field often make assertions that go far beyond such tentative approaches. These claims erase any distinction between “medically unexplained symptoms” and “medically unexplainable symptoms”—a point discussed at length by journalist Maya Dusenbery in her excellent new book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. The certainty with which these health care professionals impose their ideas on vulnerable patients—who are disproportionately female–reflects a troubling arrogance about their own diagnostic acumen and healing powers. That they are viewed as authorities in deciding whether others suffer from mental illness–based solely on symptoms that are currently unexplained–can lead at times to serious abuse. Just ask Karina Hansen and her family.

Jennie Spotila has recently written about the situation on her blog, Occupy M.E. For those not familiar with Jennie’s important and excellent work, I highly recommend reviewing previous posts as well. She always provides cogent analysis and smart insights into the politics and debates involving this disease. Here’s what she wrote last week about the decision to invite Per Fink to dispense his dangerous ideas to other clinicians:

When researchers and institutions offer the microphone to ME-denialists like…Fink, we have to speak out against it. When a university of Columbia’s caliber invites one of the people responsible for holding Karina Hansen–against her will and incommunicado for years–to speak at a conference on psychosomatic illness, we have to speak out against it.

This is not an example of academic freedom and divergent points of view. Fink will speak about “bodily distress syndrome,” the landfill he invented for ME and CFS and a number of other medical conditions. This is like inviting a climate change denier to give the keynote address at a UN Climate Change Conference, or inviting Andrew Wakefield to speak at the National Immunization Conference. There is no justifiable reason for it. Academic freedom is an essential principle in science, but it is not an impenetrable shield to be deployed in defense of every misinformed or misguided speaker invitation.

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I hope some smart clinicians, scientists and advocates are present not only outside at the protest but inside at the event itself to hold Fink to account by asking tough questions and follow-ups. Here are a few of the questions I would like to ask him myself:

Do you agree that other illnesses presumed in the past to be psychological or psychiatric in nature have now been shown to be physiological illnesses? If so, what makes you so sure that the same is not true of the various conditions you have dumped into the MUS category? 

What is the evidence for claiming that the conditions in the MUS category are functional somatic disorders or bodily distress syndrome (or whatever), beyond the lack to date of definitive identification of an organic cause? Why should the default presumption be that people are expressing psychological distress in this manner? How can that presumption ever be proven? How can it be disproven? 

What is the evidence for “pervasive refusal syndrome”? Isn’t this a diagnosis designed to explain why therapies based on the presumed presence of functional somatic disorders or bodily distress syndrome have often failed to make people better and often appear to make them worse?

If your diagnosis of Karina Hansen’s illness was correct, why did she leave the state’s care worse off than when she went in?

Comments on this entry are closed.

  • Anil van der Zee 16 October 2018, 5:55 pm

    Awesome. Great post. Come on Columbia University wake up!!!

  • Erik Johnson 16 October 2018, 6:56 pm

    Fantastic commentary.

    I used to say American patients were less “patient” about tolerating abuse because we weren’t conditioned to accept socialized medicine.
    That if British psycho-somatic ideas tried to invade our country, there would be rebellion.
    Glad to see this is happening.

  • Wendy Boutilier 16 October 2018, 7:37 pm

    Thank you for addressing this.

  • Lisa 16 October 2018, 8:06 pm

    I truly regret that you won’t be there to ask questions. And there are standards for Continuing Medical Education credits that very much seem to be violated by the topics as described in the presentation titles. This was discussed on the science4me forum:
    “ACCME has an article on how CME credit providers should deal with controversial topics:
    https://www.accme.org/highlights/dealing-controversial-topics-your-cme-program

    An excerpt:
    ‘CME providers need to develop activities that encourage free and rigorous scientific discourse — while ensuring that faculty do not advocate or promote unscientific treatments and that clinical care recommendations are based on established scientific consensus. When a CME activity includes information about an approach to diagnosis or treatment that is not generally accepted, it is allowable to facilitate debate and discussion about the approach, but it is not allowable to advocate for the test or treatment, or teach clinicians how or when to use it.'”

  • Simas 16 October 2018, 8:13 pm

    “If your diagnosis of Karina Hansen’s illness was correct, why did she leave the state’s care worse off than when she went in?”

    The funny thing with psychiatrists is that they always have an explanation for their failure. Oftentimes the explanation is actually the diagnosis itself! How convenient, right? In this case, it would probably be explained by the same “pervasive refusal syndrome” and that’s it. It’s never their fault.

  • S 17 October 2018, 4:39 am

    Great post. I think when Karina didn’t respond to Fink’s treatment they dumped her in a general ward had her re-diagnosed as brain damaged if i remember rightly.

  • Lady Shambles 17 October 2018, 5:29 am

    I do always find it curious that the BPS crew from any nation seem to set a very high store for ‘evidence’ wrt to diseases they consider not to be organic but instead to be within their purview whilst at the same time providing precisely ‘zero’ evidence for their fanciful constructs of the same disorders as ‘psychosomatic disease’. They continually ‘adjust’ the descriptions and alter the acronyms for these fictitious ‘disorders’. I question why this is necessary other than to try to re-frame dodgy ‘concepts’ once the unsuspecting world have eventually cottoned on to their nefarious semantic distortions. The old wry aside about the ‘lunatics running the asylum’ surely presents itself?

    By way of another digression, and wrt Per Fink’s behaviour and that of others like him (because he is not alone), I’m always reminded of another Nordic-Noir character, that being the psychiatrist Peter Teleborian in Stieg Larsson’s Millennium Trilogy. 😉

  • Sue Wilson 17 October 2018, 5:50 am

    Instead of uninviting Fink perhaps they should invite Valerie Eliot Smih to respond to his lectures by video link in order to provide balance.

  • Michael Dyson 17 October 2018, 8:28 am

    I signed the petition but not sure if it was right because of freedom of speech. If Ron Davis was deinvited from a conference organised by Simon Wessely we’d be complaining. Note recent decision by UK Supreme Court re Ashers Baking Company. People should be free to promote or oppose any legally permissible message. But it’s vital the media provide fair and accurate coverage.

  • Terri Wilder 17 October 2018, 12:10 pm

    To clarify, NY #MEAction is organizing the protest. Can you correct in article?

  • Ken Wyke 17 October 2018, 4:22 pm

    I thought Doctor Mengler and his methods had long since departed.
    For eight years, I have watched my beautiful son wasting away with ME.
    Fink and his perverted doctrines must be stopped before he creates more mayhem.
    Speak out now!

  • Fiona M 17 October 2018, 11:43 pm

    “I hope some smart clinicians, scientists and advocates are present not only outside at the protest but inside at the event itself to hold Fink to account by asking tough questions and follow-ups.”

    I hope so too – like Prof’s Raccianello (sp.?), Hansen, Lipkin and Hornig, who know about PACE and its mooring in spurious theories about so-called functional somatic disorders like ME/CFS!

  • Per Fink 20 October 2018, 6:02 am

    Unsubstantiated claims and misinformation about a particular Danish patient are spreading on the social media – now on this blog too.

    It is a deplorable case that has affected all involved parties deeply. However, we believe that most people will understand that because of duty of confidentiality, we are unable to publicly discuss a patient without the patient’s consent. Further, we find that it is disrespectful and a violation of a young woman to expose her suffering and making her illness history public domain. Even confidential medical information has been published on the internet. She has not approved to be a front figure in an ideological fight.
    The Research Clinic for Functional Disorders is an outpatient clinic. In special circumstances, we share treatment responsibilities with other medical departments, which we did in this case. The admittance to a rehabilitation facility was an act of necessity according to Danish legal practice – a decision which The Research Clinic for Functional Disorders was in no way involved in and therefore cannot account for.
    In Denmark, it would not be possible to carry out an action as described on the social media; it would be illegal. In connection with the admission, her parents have taken several legal actions in the courts, none of them having resulted in any negative critique of the treatment. Besides, the course of treatment has been scrutinized by an independent committee of the Danish Parliament, again without leading to any negative critique.
    In general, we can inform that The Research Clinic for Functional Disorders has never treated any patients against their will or refused any patients to leave the department or discharge themselves. Thus, to postulate that I or any member of my team have violated human rights is outrageous. It is reprehensible to suggest that I or anybody in the clinic have initiated or contributed to children being removed from their homes.
    Our clinic is a department at the Aarhus University Hospital, which has been rated the best hospital in Denmark in the past 10 successive years. Like any other medical departments in Denmark, we have to meet the highest medical standards and act according to the law and are continuously being supervised by The Danish Health Authority. We have received extremely few complaints from patients that have received treatment in our clinic.
    The department, the research and the treatments we have developed since 1999 have proven very successful and are well accepted both by most patients and colleagues. Initiated by The Danish Health Authority, this has now resulted in the implementation of similar clinics for functional disorders in all Danish regions (see English summary on p. 6 in the report ‘Functional disorders. Recommendations for assessment, treatment, rehabilitation and destigmatization’, published by The Danish Health Authority, June 2018). https://www.sst.dk/da/udgivelser/2018/funktionelle-lidelser-anbefalinger-til-udredning-behandling-rehabilitering-og-afstigmatisering).
    David Tuller states that, as he understands it, my basic position is that anyone experiencing persistent physical symptoms for which no organic basis can be found has a mental illness. Mr Tuller has obviously not taken the trouble to read any of my papers, where he would find no such position.
    We work with functional disorders, which is an umbrella term for a group of illnesses in the tension field between psyche and physique, and these disorders challenge the dichotomous thinking; that it is either physical or mental. This thinking is deeply rooted in the Western perception of illness and seems very difficult to break away from, although it is unproductive both from a scientific and a clinical point of view. The distinction is meaningless in functional disorders. The patients suffer from physical symptoms, but since medical science has had difficulties understanding the mechanisms behind, the patients are often left to their own devices without treatment offers.
    Recent research shows that multiple factors contribute to a functional disorder such as biological, psychological, social and environmental ones. As long we do not know the cause or the mechanisms behind, we must keep an open mind and not exclude neither biological nor psychological research or any other approaches that may lead to better treatment of functional somatic disorders.
    Per Fink, PhD, DMSc.
    Professor, Head of Department

  • Alan Webster 25 October 2018, 7:04 pm

    The issue appears to be that if the only tool you have is a hammer, then every problem becomes a nail! As I understand it, a functional somatic disorder is a default mental disorder, simply by the absence of any other explanation. In the case of ME/CFS however the mounting evidence, widely accepted by a large proportion of the scientific community, points very strongly to the condition being organic in nature.
    Why then are some researchers continuing to hold a candle for the path leading to the psychiatrist? There are all sorts of reasons but one rarely articulated and yet vital to understand is a psychological one!
    After all, you would think that Professors/scientists of any stripe would be open minded and accepting of new ideas and be willing to ditch their dogma at the drop of a hat when faced with evidence to the contrary.
    It turns out that from a mental perspective, academics crave one thing above all else and that is recognition! (note I don’t mean fame or celebrity) Recognition by their peers, to be recognized as a leader in their field of study, to be the one that everyone goes to for the last word on a subject…. Do not underestimate this personality flaw because it drives them heart, mind, body and soul!
    The practical consequences can be mildly irritating or highly damaging as is the case with ME/CFS – clever individuals who, arguably, should know better have let their professional pride hold back the development of treatments for this wretched condition at all levels and continue to do so. It may fall on deaf ears but I beg all those involved to put the well being of thousands of long suffering ME/CFS patients ahead of personal self interest considerations.