Denmark - Manifest to health authorities from 85 ME-patients

Kalliope

Kalliope

Senior Member (Voting Rights)
The local Danish newspaper Ukeavisen Esbjerg has written several articles about a severe ME-patient who is bed bound and nursed by her parents, and whom the municipality sees fit to work and thus not in need of welfare money.

Today the newspaper print a manifest made by 85 ME-patients who tell their stories and ask for better care for ME-patients. This manifest will be delivered to the Danish health authorities on Thursday.

Ugeavisen Esbjerg - 85 stemmer fra ME-mørket: Hør os nu
google translation - 85 voices from the ME-darkness: Listen to us now

Manifest in the newspaper (digital version - so not possible to google translate)

Demands (translated in a hurry by me, so should not be quoted as the Manifest's demands, but will give an idea of its contents)

  • Recognition of ME as a physiological disease
  • Education for doctors about ME
  • That information about ME is updated
  • That the health authorities takes responsibility for the treatments given to ME-patients as GET/CBT are harmful, or at least that patients are given information about risks
  • That doctors seek information about treatments that might be of help
  • That the health authorities and others get updated about the disease and diagnostic criteria
  • That neurasthenia, chronic fatigue syndrome, burn out syndrome, fatigue syndrome and ME get individual diagnostic code
  • That ME centres are established and with a somatic approach

However, the health authorities themselves say to the newspaper that they've established a committee that will develop new guidelines about assessment and treatments of functional disorders, and that ME-patients will benefit from this. It is not true that they are not updated on international research. They are in contact regularly with experts internationally. For instance, while working on the new guidelines, they've been in touch with Norwegian colleagues in order to share research and knowledge. According to them, Norway and Denmark are in line with each other regarding treatment principles.
 
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Kalliope said:
The local Danish newspaper Ukeavisen Esbjerg has written several articles about a severe ME-patient who is bed bound and nursed by her parents, and whom the municipality sees fit to work and thus not in need of welfare money.

Today the newspaper print a manifest made by 85 ME-patients who tell their stories and ask for better care for ME-patients. This manifest will be delivered to the Danish health authorities on Thursday.

Ugeavisen Esbjerg - 85 stemmer fra ME-mørket: Hør os nu
google translation - 85 voices from the ME-darkness: Listen to us now

Manifest in the newspaper (digital version - so not possible to google translate)

Demands (translated in a hurry by me, so should not be quoted as the Manifest's demands, but will give an idea of its contents)

  • Recognition of ME as a physiological disease
  • Education for doctors about ME
  • That information about ME is updated
  • That the health authorities takes responsibility for the treatments given to ME-patients as GET/CBT are harmful, or at least that patients are given information about risks
  • That doctors seek information about treatments that might be of help
  • That the health authorities and others get updated about the disease and diagnostic criteria
  • That neurasthenia, chronic fatigue syndrome, burn out syndrome, fatigue syndrome and ME get individual diagnostic code
  • That ME centres are established and with a somatic approach

However, the health authorities themselves say to the newspaper that they've established a committee that will develop new guidelines about assessment and treatments of functional disorders, and that ME-patients will benefit from this. It is not true that they are not updated on international research. They are in contact regularly with experts internationally. For instance, while working on the new guidelines, they've been in touch with Norwegian colleagues in order to share research and knowledge. According to them, Norway and Denmark are in line with each other regarding treatment principles.
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Wait, so Norway also treats patients according to the idea that patients suffer from false illness belief?

Which Norwegian experts where they in touch with I wonder? Prof. Wyller lol?
 
Yes, why don´t they get their inspiration from Fluge, Mella and why not from Swedes like Gottfries, Blomberg and Blomqvist?

Kalliope said:
...they've established a committee that will develop new guidelines about assessment and treatments of functional disorders, and that ME-patients will benefit from this
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Why have functional disorders as a model ? That reveals their lack of knowledge.
 
Excellent initiative by the patients and the newspaper.

Having a long list of short patient stories – instead of the usual one or two longer stories - is quite effective I feel. Instead of there being one or two unfortunate individuals readers briefly feel sorry for before moving on, here readers get the idea that here is one patient and here is another and another and another and another and repeat 85 times.... so readers see that this is more than an individual patient complaint, that it's a systematic problem, that something is rotten in the state of Denmark.

The response by the health authorities is weak, to put it mildly.

One bit in the manifesto struck me: They ask that the health authorities accept ME as a physiological illness and then claim that “there are several EU court rulings that establish precisely that”. The actual wording is "EU-domme". Does anyone know what this refers to? Actual European Court rulings? Local court rulings in individual EU countries, maybe about individual patients?
 
Ravn said:
One bit in the manifesto struck me: They ask that the health authorities accept ME as a physiological illness and then claim that “there are several EU court rulings that establish precisely that”. The actual wording is "EU-domme". Does anyone know what this refers to? Actual European Court rulings? Local court rulings in individual EU countries, maybe about individual patients?
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I don’t know what exactly they are referring to and hoping someone knows more about this, but I do know there have been at least two court rulings in Norway stating that ME is a serious and debilitating disease (no reference to physiology as far as I know). They are both from cases where patients/carers have sued the benefits/social service (NAV) for not providing adequate services/benefits because ME was not considered debilitating enough.
 
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