DENMARK

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

Rebecca Hansen​
​

• 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.
https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-015-0393-8
 
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.

• Do you know approximately how many people live with ME in Denmark?

The ME Association uses the statistic of .02-.04 percent prevalence, which mean 11-22.000 people. We think less than 1000 have the diagnosis. Most of these received the diagnosis 10-30 years ago from doctors that are now retired or dead. The government does not keep statistics about ME.

• How long does it take to get diagnosed and what problems do patients face with this?

The majority of patients will not get the diagnosis of ME in Denmark. Many doctors have never heard of it, and a growing number don’t “believe” in ME because they have been to one of Per Fink’s classes that teach that ME is a functional disorder. These classes are currently being taught to all medical students in some parts of the country, and the plan is to make the classes mandatory for all medical students.  ME patients most often get a misdiagnosis of a functional disorder (somatoform illness, F48). They can also be diagnosed with stress, health anxiety or depression. Exercise is seen as a cure-all for every illness here. There is a handbook that tells doctors how to treat illness with exercise. ME is included in this guideline. The ME Association has requested that ME be removed from this guideline. It is currently up for review.  
 
Physical Activity - Handbook on Prevention and Treatment
https://www.sst.dk/da/udgivelser/2011/~/media/1CE89F3206874263888BA4719419B844.ashx
 
This handbook is funded by an insurance company’s foundation: Trygfonden. Trygfonden has also paid for much of Per Fink’s research.  Since ME is officially under a psychiatric specially in Denmark, patients are referred to The Research Clinic for Functional Disorders and Psychosomatics, where Prof. Per Fink is the head doctor. You may remember him from the Karina Hansen case.

• How is ME perceived in Denmark?

​ME is officially called Kronisk Træthedssyndrom (chronic tiredness syndrome) in Denmark. It is seen as a Functional Disorder, as is fibromyalgia, tinnitus, tension headache, chronic pelvic pain, PMS, IBS, and many more.  In Denmark, a functional disorder is always understood to be a psychological problem. The healthcare officials see Per Fink as the top expert in ME in Denmark. Fink is responsible for writing the official web pages about ME, which are filled with incorrect information. On the doctor handbook page, he mixes chronic fatigue, burnout, somatoform illness and ME together and lists 3 WHO codes for ME. The World Health Organization has specifically stated that using more than one diagnostic code for an illness is not allowed.
 
The official hypothesis is that ME, IBS, etc, are forms of bodily stress and that incorrect illness beliefs and deconditioning are the cause of ME symptoms. Fink believes that previous trauma and sexual abuse probably play a role. For years, Fink has been pushing to get his research diagnosis, Bodily Distress Syndrome, accepted.  In this slideshow from 2017, you can see his BDS hypothesis. On page 11 he lists all the illnesses he thinks belong in this category.
Syndromes of bodily distress or functional somatic syndromes - Where are we heading?
http://www.eapm2017.com/images/site/abstracts/PLENARY_Prof_FINK.pdf
 
Fink claims that CBT and GET can cure 25%, help 50% and that the other 25% are not hurt by these treatments. http://funktionellelidelser.dk/om-funktionelle-lidelser/behandling/
 
This claim is based on one study, that was strongly criticised by Prof. James Coyne.
https://mindthebrain.blog/2016/12/07/danish-rct-of-cognitive-behavior-therapy-for-whatever-ails-your-physician-about-you/
 
In 2012, the Health Department gave Fink’s clinic the responsibility of opening a Knowledge Center for Chronic Fatigue Syndrome (ME). In the 6 years it has been open, no patient has even gotten an ME diagnosis. This clinic has not worked with any ME experts or attended any ME conferences, despite our multiple offers. Until 2018, there was nothing about the “knowledge center” on their website. Currently there is, but ME is called Kronisk Træthedssyndrom and is defined as....
http://funktionellelidelser.dk/om-funktionelle-lidelser/kronisk-traethedssyndrom/
 
Here is the patient folder from the clinic. It tells patients that the cause of their illness is that a filter in their brain is not working and it is letting too many signals get through.
http://funktionellelidelser.dk/fileadmin/www.funktionellelidelser.au.dk/patient_Pjecer/When_the_body_says_stop.pdf 

• Are there any doctors in Denmark who are interested in biomedical research/solutions for ME?

In the past, doctors who tried to help ME patients, were often investigated by the Board of Health and criticised for not treating patients with the official treatments: CBT, GET and antidepressants. For instance, Karina Hansen's doctor was told she was only allowed to use these treatments and that is why she quit as Karina’s doctor. Very few doctors were willing to risk their career to help ME patients. It was almost impossible to get a doctor to talk to a journalist about ME.
 
But because of the overwhelming amount of scientific evidence, and the IOM report, this has started to change. We are seeing an increasing number of doctors that are willing to talk about ME openly. In the past 5 years, interest in attending ME conferences has grown. This year, 5 Danish doctors will be attending the Invest in ME conference in London.

• I've heard about a patient called Marie Louise from Fanø who was gravely ill and her parents were fighting the authorities. Do you know anything about this case you could share?

 
I became aware of Marie Louise’s case about 3 years ago when her parents contacted the Danish ME Association. At this time, Marie Louise, 28, had been sick for several years and had already gone through CBT and GET at Finks clinic. This state-approved treatment made her illness worse. Marie Louise’s doctors were insisting that she was not as sick as she claimed and they wanted her to go back to Fink’s clinic.
 
The ME Association has done what we can to put her family in contact with doctors that understand ME and to help them with the social system. We listened. We shared knowledge. We empathised. We let them know they were not alone. These are all important jobs of an ME Association when the government is clueless about ME. This heart-breaking case is a classic example of how ignorance about ME hurts patients and their families.  
 
Marie Louise’s municipality refused to believe that she could not be made better by more of Fink’s treatments and kept pressuring her to submit to more of this, even though she is completely bedridden and needs 24-hour care. She is in extreme pain. Her parents had to stop working in order to care for her because her caseworkers would not grant in-home help. The caseworkers turned down her application for a pension and recently wrote that she should start thinking about working again. Her caseworkers refuse to understand that one can be this severely ill with ME.
 
Erik Haldan, a fantastic journalist/editor, has been writing about her case for many weeks. He is doing serious in-depth journalism. His dedication to this story and the ME problem in Denmark gives me hope. Haldan always uses the term ME and the diagnostic code G93.3. He never calls it CFS or kronisk træthedssyndrom. This is the first time this has happened in Danish media. 
 
In an article from Feb. 28, a head doctor and immunologist, Kim Varming, stated that he had known Marie Louise since 2015, that she was severely ill, there were no current treatments and that the family needed help.
https://ugeavisen.dk/esbjerg/Speciallaege-Hun-er-syg-og-familien-har-brug-for-mere-hjaelp/artikel/345367
 
The municipality denied her pension because: “there is no proof that treatment possibilities are exhausted”
https://ugeavisen.dk/esbjerg/ME-sagen-Kommune-holder-fast-i-nej-til-hjaelp/artikel/349977
 
Erik Haldan has written 13 articles so far and there are more to come. Vibeke VInd, from the ME Association was interviewed in this one:
https://ugeavisen.dk/esbjerg/Patientforening-glad-for-opmaerksomhed/artikel/346377

• What would you like to see change about the situation for people living with ME in Denmark?

Everything! Patients are being mistreated and harmed every day. They cannot get medical or practical help because of the incorrect information about ME that is on official pages and is being taught to our doctors. Patients with money can go to private clinics and be thoroughly investigated. Many get symptomatic treatments that help. But the majority cannot afford this. This creates an inequality that goes against the basic principles Denmark stands for.
 
In order for things to change for ME patients, we need the authorities to accept ME as a distinct neurological illness. We need a national report about ME, as was done in the US, Holland, etc. I believe we need the help of international ME experts to do this. We need a Center of Excellence for ME. We need the official webpages about ME to be updated. We need doctors to be trained in what ME really is. We need a media campaign that informs the public that ME is a serious, chronic, neuro-immune illness.

• Is there anything practical we can do to help people with the illness there?

Awareness campaigns, like Mike’s EU Marathons and Millions Missing are helpful. If other ME advocates would speak about the dire situation in Denmark, that may help.

• Are there any reasons to feel optimistic about the future for patients in Denmark?

Eric Haldans articles about Marie Louise’s case makes me hopeful. The growing number of doctors that are willing to talk about ME and go to medical conferences also gives me hope.

• What are the activities and aims of the Danish ME Association?

We have a homepage: http://me-foreningen.dk/  And a facebook page: ME Foreningen - ME Association, Denmark
 
Our main goals are education, awareness and working for policy changes.  We think it is important to call the illness ME and not ME/CFS or CFS. We use the ICC criteria, which we translated into Danish. www.tinyurl.com/me-konsensusvejledning
 
We also create other brochures in Danish. Our most recent brochure was on POTS, which many ME patients have. It was edited by a top doctor. http://me-foreningen.dk/wp-content/uploads/2018/04/Folder_19x19_netbrug.pdf
 
We have a magazine that comes out 3 times a year with science updates, patient stories, international news and articles about living with ME.  Several times a year, we invite a speaker to tell about some aspect of ME. We have a Facebook group for members only and this is a very good place for people to “meet.” Patients have a lot of knowledge and here we can share it with each other.
 
We are part of the Millions Missing action and have hosted viewings of ME films. In November, we rent a booth at the week-long Doctor Days, and give out information about ME. This is a great opportunity to have a face-to-face conversation with doctors. Here is our doctor brochure. http://me-foreningen.dk/wp-content/uploads/2017/11/L%C3%86GEH%C3%86FTE.pdf
 
We contact journalists and researchers to keep them updated on the exciting scientific findings in ME. We contact politicians with our continued request for a much-needed Center of Excellence. For the last 3 years, we have written an annual status report that explains how bad the current situation is, and what needs to happen to help ME patients in Denmark.

• Many people around the world are aware of the case of Karina Hansen.  Can you give us an update as to how she is doing?

Karina is at home. She was not cured of her ME while she was held against her will and forced to undergo CBT and GET. She is working with a psychiatrist of her choice to overcome the trauma she endured. She still does not speak but writes and texts. Updates about Karina are often posted in The ME Global Chronicle. This is a fantastic online magazine about ME. See page 69 of the March 22 edition for the latest information about her case.   https://let-me.be/download.php?list.1  

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Kamilla Thomsen

• How long have you had M.E and how did you become ill?

I've been sick since January 2012, it may have started earlier. I recently received the results of several tests I have had taken abroad, since the danish system is denying ME patients any help.  The tests revealed Lyme and several toxic molds.

• How were you diagnosed and how long did it take?

I finally got the correct diagnosis in February 2017. After endless appointments with pretty much all sorts of specialized doctors the danish system had to offer. After 5 years struggling with the system, all it took was one consultation (1.5 hours) with a leading neurologist at "Privat Hospitalet Danmark". Maybe I got lucky, but the doctor I meet not only knew of ME, he had been researching it for over a decade, and there was no doubt in his opinion.

• How does it affect you?

It makes my body my prison. Everyday I am forced to look through the bars as the world flies by, while all I can do is lie here in pain, unable to move without out my ME punishing me, with even greater illness. Every day I ask myself why it is so hard for the Danish government to believe in this disease, when I read about people abroad whom is given some of their life back when the ME condition is properly treated. How can they keep denying what has been proven by so many different doctors and scientists across the world?

• What do you miss most about your life before having ME?

In one word "Life". But most of all I miss being able to see my family and my friends. I miss being outside in the fresh air, feeling the sun and the wind on my skin.

• Are the health authorities aware of ME and what is their perception of it?

ME is not included in the danish doctor education, so 99,9% of danish doctors don't believe you when you say you have a disease they don't know anything about. If you are so bold as to try to hand them a piece of paper from the Danish ME association, it goes straight in the trash. If you are the one in a million that meets a doctor that will actually help you, it is a matter of urgency! Because doctors in Denmark that actually live up to their hippocratic oath, are stripped of their authority as we have seen with Stig Gerdes in "Karina-sagen". This still goes on today. In Esbjerg the local authorities are currently trying to force a bedbound ME sufferers to start working. She is so sick she can't chew her food, all meals are blended. Daylight, the sound of a whispering voice, even this makes her twist in agony, and yet the Mayor will not call off the dogs. This is just the most recent case, in a so far never ending tale of terror. How ME suffers are treated in Denmark is so shameful, so unworthy! This is the greatest medical scandal in recent history, recently proven by the publishing of the lies and incorrect data used with the "PACE" model. Despite the long list of proven, irreversible, damage being done to ME suffers, Danish authorities continue to practice this still.

• What treatments (if any) have been recommended by doctors to you?

"You need to get out more, go to the movies etc.". "You need to push your self hard everyday"." This must be in your head, you need a lot of antidepressant medicine." These and many like them, from people that have absolutely no clue what they are talking about. Their advice sent me rocketing into decline, which has left me a living dead, forced to see life continue everyday, but unable to participate.

• Do you know of any biomedical projects taking in place in Denmark?

None that I know of, mainly due to the lack of funding of this. Danish authorities think it wiser to spend the money hunting and harrassing ME suffers, than to spend money helping them.

•  What is the view of CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) in Denmark? Are patients aware of the PACE Trial controversy?

Those are the exact methods that are used in DK. so I would say they are praised by authorities. There has been awareness of this for many years, ME associations, patients, family to patients and many more have been complaining. But to no use, on this day Danish ME suffers are still being forcefully medicated, they are still being ridiculed and hunted by authorities.

• Do patients have access to financial support/benefits to help them?

There are a few who get acceptable help from their "kommune", but for far the majority of Danish ME suffers, the best result they can hope for is that they can suffer in peace. Not being hunted everyday by authorities.

• What would you like to see change about the situation for people living with ME in Denmark?

ME need to be acknowledged as the severe physical disease it is. Authorities needs to stop, hunting and terrorising the suffers. We as a welfare nation need to step up to our responsibility and contribute with money, with education of personal that actually know how to help ME patients, and least but not last, get into the massive international quest to cure ME.

• Is there anything practical we can do to help people with the illness there?

Yes, and especially from the countries that either recently or long ago rejected the "PACE" model, which is still being practiced in Denmark. Please help enlighten our government and our doctors, so that they also may help Their ME suffers, instead of mocking, hunting and terrorising them. The "PACE" model is the greatest medical scandal in recent history, and it continues to destroy lives in Denmark every day.

01.05.2018