The fight continues in Denmark for proper recognition and care for people with myalgic encephalomyelitis (ME).
Last March in a huge victory for people with ME, Danish MPs unanimously agreed on a declaration that will recognise ME as a distinct disease, remove it from the “functional somatic syndromes” category, and promote the World Health Organization (WHO) diagnostic codes for ME. Read more.
While this was a big win, The Danish Health Authority has been unwilling to follow Parliament’s decision. They reject the use of the diagnosis code G93.3, separate from “functional disorders” and still recommend graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for ME patients, which extensive surveys have shown to be harmful or ineffective for people with ME. The Danish Health Authority wants ME patients to be referred to five regional centers for “functional disorders”, where there is no ME expertise and where they follow the guidelines of the Health Authority.
This month, the ME Association, Denmark sent and posted an open letter to Danish health politicians, which was signed by 97 international ME researchers and experts. This open letter is based on a similar letter sent by Groep ME-DenHaag to the Dutch Minister of Health.
The letter states, “Based on this scientific evidence, there is an imminent need to change the narrative of ME to avoid that patients are misdiagnosed or further stigmatized by falsely equating the disease with (chronic or unexplained) fatigue, deconditioning or psychosomatic classifications, like functional disorders, medically unexplained symptoms, somatoform disorders, somatic symptom disorder, functional somatic syndrome, neurasthenia, or bodily distress disorder/syndrome.” Read the letter in full.
The Minister of Health, Magnus Heunicke (S), has been asked to evaluate current methods of assessment and treatment of people with ME, and whether he is considering other initiatives other than those set out in Decision V 82 of 14 March 2019.
The consultation question was asked at the request of Liselott Blixt (DF) and Susanne Zimmer (ALT).
Rebecca Hansen from the ME Association, Denmark explains, “This Open Consultation is something politicians can ask to have with a minister to discuss a topic/explain something they think needs attention. It is a kind of “calling on the carpet” tactic. It is open to all and I know several patients have signed up to go.”
The open consultation will be held live and streamed on Tuesday the 14th of January, 2020 from 3-4 pm GMT (16 and 17 o’clock CET) and will also be available afterwards. Watch the livestream!
The ME Association, Denmark has shared many of the articles following the March decision by Parliament regarding pushback from the health authorities, as well stories shared by people with ME in Denmark. Follow ME Association, Denmark on Facebook and on their website.
Thank you to Helle Rasmussen and Rebecca Hansen from the ME Association Denmark for their help in compiling this information!