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. Finkâ€”I wonâ€™t dignify him by using an honorific–is a scary guy. He should never have been provided with this prestigious platformâ€”in my home town, no less. (Iâ€™ve lived in San Francisco for 30 years but Iâ€™ve always identified as a New Yorker living in San Franciscoâ€”an expat of sorts.) Iâ€™m overseas until late October, so I canâ€™t even go to the event and ask him a few pertinent questions about his treatment of people with ME/CFSâ€”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 (â€œmedically unexplained symptomsâ€), 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 canâ€™t find an organic cause must be suffering from a mental illness. This mental illness might require themâ€”especially if they are Danish–to be sequestered from their families against their will for years.
Moreover, if they reject Per Finkâ€™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 â€œpervasive refusal syndromeâ€â€”for which the main symptom seems to be a rejection of Per Finkâ€™s advice. (Can someone please explain to me the difference between â€œpervasive refusalâ€ and â€œnon-pervasive refusalâ€? Is â€œnon-pervasive refusal syndromeâ€ also a purported psychiatric illness?)
This weekendâ€™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 â€œHealing â€˜Unexplainableâ€™ Pain: Advances in Multidisciplinary Integrated Psychosomatic Care.â€ Finkâ€™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 peopleâ€”even horrible peopleâ€”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.)
Fink has most famously deployed his theoretical approach to MUS or what he often calls â€œbodily distress syndromeâ€ in the horrendous case of Karina Hansen, a young woman from Holstebro, Denmark. Karina was essentially kidnapped from her familyâ€™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 Karinaâ€™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 Valerieâ€™s posts about Karina: https://valerieeliotsmith.com/category/karina-hansen/Â
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 ofÂ Myalgic EncephalomyelitisÂ (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.
InÂ 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 toÂ Hammel NeurocenterÂ (described as â€œThe Research Clinic for Functional Disordersâ€) which treats patients with neurological damage and diseases. It seems that a number of doctors have been involved in Karinaâ€™s case but psychiatristsÂ Nils Balle ChristensenÂ andÂ Per FinkÂ 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 â€œfunctional disorderâ€ ie. effectively a psychosomatic condition. As a result, their recommended treatmentsÂ are exercise therapy/physical rehabilitation, psychotherapy, â€œsensoryâ€ (occupational) therapy and psychotropic medication. Whilst these treatments can sometimes help patients with apparently similar conditions (who are often misdiagnosed with ME or â€“ so-called â€“ â€œchronic fatigue syndromeâ€œ), patients who genuinely have ME are very likely to deteriorate with these treatments â€“ often with serious and long-lasting effects.
After her admission to Hammel, Karina was diagnosed withÂ PAWSÂ â€“ also known as pervasive refusal syndrome. This is characterised by a patient engaging in obstructive behaviour which is designed to resist treatment.Â 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 parentâ€™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 stateâ€™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.
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 â€œBodily Distress Syndrome or Functional Somatic Syndromes: How to diagnose and treat.â€ The second is called â€œHow 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.â€
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 â€œmedically unexplained symptomsâ€ and â€œmedically unexplainable symptomsâ€â€”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 patientsâ€”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 Jennieâ€™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. Hereâ€™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 likeâ€¦Fink, we have to speak out against it. When a university of Columbiaâ€™s caliber invites one of the people responsible for holding Karina Hansenâ€“against her will and incommunicado for yearsâ€“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 â€œbodily distress syndrome,â€ 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.
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?Â
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?Â
What is the evidence for “pervasive refusal syndrome”? Isnâ€™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?