More than 14,000 Danes suffer from the disease ME. Doctors and politicians are quarreling over how action should be taken
For a year and a half, 14-year-old Adam Michelsen from Roskilde has been bedridden, cut off from schooling and has been living socially isolated due to the disease ME, Myalgic Encephalomyelitis. It is a disease that, among other things, results in severe fatigue. His parents feel that the concern over the son's illness is overshadowed by a constant struggle to gain understanding in the system.
Adam Michelsen is one of the more than 14,000 Danes estimated to suffer from ME, formerly known as chronic fatigue syndrome.
According to the Vice Chairman of the ME Association, Cathrine Engsig, the situation of the 14-year-old boy is not unique, although a unanimous Folketing last year decided that the efforts for ME patients should be prioritized.
“But almost a year later, nothing happened, and the National Board of Health has not made guidelines that correspond to the Folketing's decision. We are constantly approached by patients who meet doctors who are unfamiliar with the disease and cannot offer the ME specialized treatment. The public health system is not updated to have the necessary knowledge about the disease, ”says Cathrine Engsig.
She notes that the relatively few patients receiving help in the public health system are referred to the region's five functional disease centers, such as chronic whiplash and fibromyalgia, where the precise knowledge of ME, according to Cathrine Engsig, is insufficient.
The association disagrees, among other things, that the National Board of Health recommends cognitive therapy (a form of psychotherapy, ed.) And gradual rehabilitation for ME patients. The association points out that internationally recognized guidelines designate ME as a purely physical illness where the treatment consists in the patient having to adjust his activities to the limited energy level rather than pushing the body through rehabilitation.
The Danish People's Party's Health Mayor Liselott Blixt shares the concern and, together with the Alternative's Health Mayor, Susanne Zimmer, has convened Health Minister Magnus Heunicke (S) for a consultation on January 14.
“You still place ME in the pile of functional disorders and offer gradual rehabilitation. It is completely wrong when you look at studies from the USA, Sweden and Norway, ”says Liselott Blixt.
Professor and consultant Per Fink, who heads the functional disorders clinic at Aarhus University Hospital, agrees that the ME patients are an overlooked group.
“There is generally a huge gap in the offer to patients in this area. They have poor treatment options and there is huge ignorance about their suffering, ”says Per Fink.
At the clinic in Aarhus, according to Per Fink, there is an excellent offer for patients who are not bedridden.
“But there is no offer for the patients who lie in bed, and that is a big problem. We would like some beds for the worst patients, ”says Per Fink.
In contrast to the ME Association, Per Fink points out that cognitive therapy and gradual rehabilitation are the methods that, according to studies, have the best documented effect.
Therefore, Per Fink is also critical of the political majority in the Danish Parliament, which recommends that ME be separated from functional disorders and incorporated into the World Health Organization's WHO diagnostic system.
“For us doctors, it is absolutely incredible that the Danish Parliament decides how doctors should diagnose a disease. What's next? Do the Folketing also have to make decisions about the individual cancer treatment? I do not think that the politicians have thought through the decision, because in Denmark it is the doctors and not the legislation that establishes a diagnosis, ”says Per Fink, who at the same time considers that the ME Association's recommendations can be directly harmful.
The Minister of Health and Elderly Magnus Heunicke (S) is open to a renewed discussion on the assistance to ME patients.
“We have an important task in ensuring proper treatment for ME patients. How we do best in concrete terms, I want to discuss with all the parties of the Folketing, ”Magnus Heunicke writes in an e-mail.