The protest against the Danish physician, Per Fink, last week demonstrates how our community takes action in a variety of ways to fight for people with myalgic encephalomyelitis (ME).
1) #MEAction New York organized a protest outside the conference where Fink was presenting on his unscientific theory of Bodily Distress Syndrome, which includes ME and various other diseases. (Medical providers received Continuing Education credit for attending Fink’s presentation!) 2) Four people with ME attended the conference in order to counter Fink about his assumptions during the Q&A. And, 3) more than 10,000 people signed the #MEAction petition asking Columbia University to uninvite Fink from speaking at the conference.“I understand the importance of the right to free speech but it crosses the line when it harms patients,” said ME activist, Mary Dimmock, who attended the conference in order to question Fink. “And there’s plenty of evidence that his psychosomatic approach to care is denying people with ME appropriate medical care and causing harm. This approach dismisses evidence of the multi-system biological impairment of ME. Instead, the approach focuses on convincing patients their symptoms are not evidence of physical disease but can be treated and even cured with cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
Fink was invited to a psychosomatic conference at Columbia University last weekend to educate medical providers about his unscientific theory that illnesses like ME, irritable bowel syndrome, whiplash, Lyme, Fibromyalgia, and many others, are psychosomatic, which he categorizes beneath the umbrella term, Bodily Distress Syndrome or Functional Disorders. These terms have not been approved for use in any diagnostic coding system.
(Meanwhile, #MEAction just launched a Continuing Education program for medical providers to educate them about diagnosing and treating ME based on the premise that ME is a real, multi-system disease, as the research indicates.)
Fink’s clinic in Denmark teaches doctors how to retrain ME patients to convince them that they have a psychosomatic illness and have simply become afraid of exerting themselves. His treatment plan focuses on exercise and talk therapy, and isolating patients from other specialists and their family, if necessary.
#MEAction New York organized a nonviolent direct action protest outside the conference on Saturday morning, attended by both people with ME and allies, where they picketed, handed out flyers, unfurled banners, and shouted chants. (Check out the protest on social media under the hashtag #ScienceNotStigma.)
New York State Senator, Brad Hoylman, attended the protest to lend support to people with ME.
“We need to ground research in ME based on biological causes and that’s why I am here today to stand up for the activists, to stand up for the patients.” he said. In a statement, Hoylman said:
“Per Fink perpetuates the debunked and demoralizing falsehood that ME is psychosomatic illness rather than a serious biological disease. This has ramifications, including inappropriate treatments and inadequate funding for research. I’m proud to stand with those who suffer from ME, and the advocates and doctors who work on their behalf against this cruel and dangerous practitioner.”
Donny Moss, an able-bodied activist and ally, managed to enter the conference room where Fink was speaking to disrupt his talk by yelling, “Spreading this misinformation about people with ME is reckless. When people with ME are under attack, what do we do? Stand up, fight back! ”
He was cooperating by walking away with security when they tackled him and handcuffed him in the hallway. He was then released and joined the protest outside.
“I have a couple of friends with ME and I’ve seen how much they suffer from the disease so much so that they cannot even be here today,” Donny said. “And I am able-bodied and I wanted to be a voice for my friends.”
Watch the video below of ME ally, Donny Moss, interrupting Per Fink’s talk, and an interview with Donny afterwards.
Four ME activists, including a doctor, attended the conference in order to question Fink about his unscientific theory. They asked Fink to justify the harm that graded exercise therapy has caused people with ME given the aerobic energy metabolism impairment within the disease. Fink responded that there is no evidence that exercise causes harm and that exercise is appropriate for every condition whether biological or not.
Per Fink’s sessions were not heavily attended (only 12 people attended his workshop) but the participants seemed primed to accept psychological constructs like Fink’s, as well as the mantra that exercise is always good, Mary Dimmock reported. View the handout that Fink provided about Functional Disorders.
Finally, #MEAction delivered a petition with more than 10,000 signatures to Columbia University requesting that the course director uninvite Per Fink from the conference being held at at the university.
Per Fink defends his clinic
Three days before the protest, Per Fink posted a statement on the Aarhus University webpage in which he criticizes the ME community for speaking publicly about Karina Hansen, who was forcibly removed from her home and hospitalized against her will in 2013, at the age of 24. This was done at the direction of the Minster of Health, Astrid Krag, the Holstebro police and Per Fink. Per Fink and Nils Balle Christensen, head doctors at the Research Clinic for Functional Disorders and Psychosomatics, arranged for Karina to be involuntarily institutionalized at the Hammel Neuro Center where Karina was a de facto psychiatric patient.
The truth is that, after the first attempt to remove Karina from her home in May of 2012, Karina explicitly gave approval to the Danish ME Association to use information from her medical record, her image and all the details of her case to raise awareness about her situation, and protect other people with ME from the same fate. Karina also gave her parents power of attorney in order to protect herself, which the police ignored when they forcibly removed her from her home.
Fink further claims in the statement that his clinic would never hold someone against their will, which is exactly what happened to 24-year-old Karina, who was treated against her will by the clinic, who called the police, who attempted to run away, and whose parents were prevented from visiting her.
(Karina was finally released after three-and-a-half years of forced institutionalization, and returned home much worse than when she had left. When Fink’s clinic could not cure her, they diagnosed her with Pervasive Refusal Syndrome — a pathologization of her unwillingness to obey instructions she knew would make her worse. A court finally released her from state guardianship only last week.)
The fight is real
Meanwhile, the Danish Health Authority released recommended treatments for ME last June that are based on the treatment approach promoted by Per Fink. The recommendations classify ME as “Functional Somatic Syndrome,” in which people with ME are regarded as “de-conditioned,” requiring exercise and talk therapy to to correct their “incorrect illness beliefs,” and pull them out of their funk. Read more.
Similarly, Finland is also recommending that the government adopt the Danish model based on Per Fink’s clinic for its national guidelines for chronic fatigue syndrome.
Government and insurance companies favor psychosomatic approaches like Per Fink’s because they are cheap. Instead of having to address the multi-system dysfunctions in the body from a complex, biological disease like ME, the medical establishment can blame the abnormalities on the patient’s frame of mind, and focus on inexpensive treatment options like exercise, talk therapy and anti-depressants. In the long run, this will only lead to sicker and more debilitated citizens.
Insurance companies also stand to save a lot of money from this approach. In Denmark, Fink’s clinic and its research projects are massively supported by the insurance company, Tryg, and the drug company Lundbeck. Tryg also paid for a media consultant to sell the concept of treating ME and other illnesses as functional disorders.
In the UK, insurance companies like Unum and Swiss Re have lobbied for a biopsychosocial (BPS) model of ME/CFS, which promotes talk and exercise therapy as treatment options, as a way to save money. In 2017, Fink made a presentation for Swiss Re where he claimed his treatments would save money.
The ME community will continue to fight to protect our international community from the dangerous pseudoscience and human rights abuse by people like Per Fink.