Denmark: ME/CFS in Denmark

[Pyrrhus]

Previous discussions:

Very sad news from Denmark (2012)
https://forums.phoenixrising.me/threads/very-sad-news-from-denmark.15983/

A new 'Karina Hansen' case in Denmark (2014)
https://forums.phoenixrising.me/threads/a-new-karina-hansen-case-in-denmark.31843/

MUPS = CFS (Norway/Denmark) (2014)
https://forums.phoenixrising.me/threads/mups-cfs-norway-denmark.31991/

Danish newspaper with large covering of ME-debate in Denmark (2016)
https://forums.phoenixrising.me/thr...large-covering-of-me-debate-in-denmark.46562/

Bad News for Denmark: ME patients, say new guideline, to be made well by physical training (2018)
https://forums.phoenixrising.me/thr...e-to-be-made-well-by-physical-training.60457/

 

[Pyrrhus]

More bad news from Denmark.

Health Minister Magnus Heunicke has publicly declared that ME is a psychosomatic disorder.

ME patient Helle Rasmussen's comments on the ME hearing on 22.4.21:

Health Minister Magnus Heunicke believed at the ME hearing that all points in V72 are now fulfilled, that the description of a functional disorder fits ME, and that he as a politician should not interfere with the medical profession. He long failed to say that the new regional centers for ME patients are centers for functional disorders, and the specialty plan is for functional suffering. The minister was positive about increased appropriations for research ′′ in the field ".

ME patients are still left to obsolete & harmful treatment in Danish health care after today's consultation.
[...]
Thank you and Susanne Zimmer for once again taking the minister in consultation, pointing out that Health Minister Heunicke is misinformed by among others, about the Swedish ME guidelines. This misinformation is documented by the ME expert behind the guidelines pro. Per Julin.
[...]
Goodbye to #patient rights and #equalityishealth for ME patients.
[...]
International biomedical research and knowledge of ME has been left out. The ME Association encourages Magnus Heunicke to set up a working group that includes biomedical ME experts from abroad and fix the misinformation.

 

[Pyrrhus]

A great article from Nina Steinkopf on her blog MELivet:

ME, the insurance industry and psychiatry
https://melivet.com/2021/04/22/me-the-insurance-industry-and-psychiatry/

Excerpt:

About psychiatry and the insurance industry’s impact on financial support systems for ME patients, in Denmark and Norway.

Insurance companies that have financial advantage of having ME defined as a psychosomatic disorder connect with health professionals and researchers with exactly this understanding of the disease. In addition, these companies fund research that can be used as an argument to reject claims for compensation. Here, a Nordic network with links to the insurance industry is revealed.

 

[Pyrrhus]

More bad news from Denmark.

Health Minister Magnus Heunicke has publicly declared that ME is a psychosomatic disorder.

Health Minister Magnus Heunicke is now being challenged with a no-confidence vote in the Danish Parliament over his stance on ME:

Lightning threatens Heunicke with a vote of no confidence in the case of the disease ME
https://sundhedspolitisktidsskrift....mistillids-votum-i-sagen-om-sygdommen-me.html

Excerpt:

The Danish Parliament's decision from 2019 (V82) to change doctors' diagnosis and treatment of myalgic encephalopathy (ME), among other things by pulling the disease out of the Danish Health and Medicines Authority's guidelines for functional disorders, has not created political calm about the disease.
The adoption has not been implemented, and Liselott Blixt (DF) now threatens Health Minister Magnus Heunicke (Soc.) with a no-confidence motion, and the minister conversely warns politicians against remote control of a medical field like ME. In some places the term CFS or Chronic Fatigue Syndrome is used instead of or in conjunction with the term ME.

It was a unanimous parliament that in March, just over two years ago, decided that chronic fatigue syndrome / myalgic encephalopathy (ME) should be separated from functional disorders. The background for the decision was that the efforts towards ME were, in the opinion of the politicians, deficient and insufficient, and that the patients experienced the treatment as stigmatizing. The parliament decided that the Danish Health and Medicines Authority and the Danish Health and Medicines Authority should in future separate ME and CFS from the collective term functional disorders and recognize the WHO's diagnostic classification, in which the diagnosis ME is included as an independent diagnosis - and then obtain knowledge from other countries and then initiate treatments for ME.

However, after Minister of Health Magnus Heunicke was recently convened for an open consultation on the treatment of ME by the parliament's joint health committee, member of the health committee for the Danish People's Party Liselott Blixt is critical.

"The government has not complied with any of this yet, because nothing has really changed here two years later," says Liselott Blixt.

The recent consultation was a follow-up to a closed consultation in March and a closed expert meeting on ME in the Health Committee, which took place after the ME Association sent a complaint to the Health Committee on 1 March about non-implementation of the decisions from 2019. On the open consultation in April, the Minister of Health was asked to explain the plans for a full implementation of the joint agreement.

 

[Pyrrhus]

From Millions Missing Denmark:

Petition about establishing a biomedical ME research program in Denmark. NB. Only Danish citizens can sign. The post can be shared from Millionsmissingdenmark's facebook:

https://www.facebook.com/millionsmissingdenmark/posts/4896847097085882

 

[Pyrrhus]

From Millions Missing Denmark, via Google Translate:

NEW REPORT ON THE MOST SEVERE ILLNESSES IN DENMARK

On 17.8.2022 a Danish report was published based on 19 home visits to seriously ill ME patients: https://peterlacour.dk/wp-content/uploads/De-svaerest-ME-syge-i-Danmark.-Rapport.pdf

Health psychologist Peter La Cour and doctor Susanne La Cour, both from Klinik Mehlsen, have conducted the 19 home visits to the most severe ME-patients in Denmark, and have prepared the report. They wrote this on Severe ME Day on the 8th.:

"Klinik Mehlsen received in autumn 2021 a donation given with the aim of conducting home visits to some of the hardest affected with ME and their caregivers.

In the project, 19 home visits were conducted between January and April 2022. The participants lived in all of the country and were spread across all five regions and 14 councils. A report on the visits describing the situation of the sick and caregivers will be finished soon.

Significant parts of the report are about the relationship to the healthcare system and to the social system, and the report points out and testifies that in the official health system there is simply no healthcare system for the most severe ME-ill patients in Denmark besides the practicing doctors, and that is a big deal ignorance of the disease and especially around the hardest affected.

It is also pointed out that the municipalities carry out their obligations in a quite different way and that there could only be a few examples of positive municipal support. The report proves that social management is often based on lack of knowledge and prejudice.

The most severe ME patients live in conditions that Denmark offers no other disease group.
The report will be sent to representatives of the public administration in Denmark as soon as it is completely finished."

Request:
Please share the report with politicians at the national, regional and municipal level, with health professionals and with journalists, and let's put public focus on the issue!