By Mike Harley.
I spoke to Rebecca Hansen from the Danish ME Association ME Foreningen and severe ME patient Kamilla Thomsen. Here’s what they told me about living with ME in Denmark.
For Danish translations click here
- Can you give us an overview of what life is like for ME patients in Denmark?
Very few doctors in Denmark know that ME is a biological illness, so most patients do not get an ME diagnosis. Instead, when a patient presents with ME symptoms, they are told that they are stressed, just need to pull themselves together and get some exercise. They are often put on anti-depressants. It is hard for patients to get a doctor to refer them to relevant examinations to rule out other illnesses, or even to get basic blood tests taken. For example, we talk to patients that have never had their vitamin D levels tested. They are seen as difficult patients that take up a doctor’s time.
The official view is that ME is a form of somatoform illness, a mental illness, so ME patients receive incorrect treatment that can be harmful to them. This official view also makes contact with the social system extremely problematic. Many ME patients have families that do not understand why they just can’t exercise their way out of their illness. Parents are often blamed for their child’s illness and we know of several cases where children have been removed from their parents. Karina Hansen is one of them. Her story can be seen in the film Unrest and read about here: http://me-pedia.org/wiki/Karina_Hansen
The main reason for this overwhelmingly negative attitude about ME, is a long campaign by a group of psychiatrists who are working to have ME seen as a form of somatoform disorder, called a funktionel lidelse (functional disorder). This group of psychiatrists is led by Per Fink and they work with Hans Knoop, Peter White, and Michael Sharpe.
Since 2010, Per Fink has taught classes to doctors, social workers, physical therapists and others about how to deal with these “difficult patients.” He uses a teaching approach called the TERM model. The TERM model tells doctors to coach their patients to reattribute their symptoms to other causes, such as stress or childhood trauma. TERM tells doctors how to get patients to agree to treatment with CBT and GET.
“A primary goal is to alter unhelpful patient attributions for symptoms and to broaden patient attributions. It has four stages:
- Enabling the patient to feel understood
- Broadening the agenda beyond physical symptoms
- Making the link with psychosocial issues
- Negotiating further treatment
Fink’s research showed that the TERM model did not help patients, but the doctors felt better about not helping them, so he called it a success.
To read the rest of this story, click on the link below: