Danish Health Authority Refuses to Recognize WHO Definition for ME

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!

Facebook
Twitter
WhatsApp
Email

Latest News

black rectangle image, the #NotJustFatigue logo is yellow lettering in a black box. On the right hand side the words Community member launching a new website today. website www.notjustfantigue.com at the bottom and the #MEAction logo in the bottom right hand corner.

#NotJustFatigue – Community Member Launching A New Website Today!

#MEAction is excited to announce community member, Elizabeth Ansell, created a new website, #NotJustFatigue, launching today, March 1, 2024! This website was created with the hopes it will help describe ME to those who do not know anything about ME. It is a site for people to share with their family and friends. #MEAction is

Read More »
a dark plum square image with a brownish/purple square in the middle. The #MEAction logo is at the top center. the words: black ME voices: q&a with Teona Studemire are in a fancy white font. Black history month is at the bottom of the square surrounded by two black stars.

 Black ME Voices: Q&A with Teona Studemire

With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the ME/CFS and Long COVID community who is Black. Being Black and disabled is an entirely different experience. Not only do we deal with ableism, but we also deal with racism, especially medical racism. According to the

Read More »
Scroll to Top