Denmark: Open letter to health politicians from Danish ME Association with impressive list of signatures

Article in Kristeligt Dagblad. It doesn't mention the letter, but as far as I understand the letter is a mobilisation before a planned meeting with the Minister of Health January 14th with two health politicians from other parties who support the ME patients. The article mentions this meeting.

The article begins with describing the situation of a 14 year old boy with ME.

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 Parliament last year decided that the efforts for ME patients should be prioritized.

“But almost a year later, nothing has happened, and the National Board of Health has not made guidelines that correspond to the Parliament'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.

Per Fink on the other hand, while agreeing that ME patients is an overlooked group, point to his "excellent offer" for patients who are not bedridden. He hopes to expand his offer to the severe patients as well. He points out that CBT and gradual rehabilitation are methods that have the best documented effect.

“For us doctors, it is absolutely incredible that the Danish Parliament decides how doctors should diagnose a disease. What's next? Does the Parliament also have to make decisions about 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.

Kristeligt Dagblad: Sundhedsvæsenet famler i behandling av særlig lidelse
google translation: The health care system is struggling regarding treatment of particular illness

 
Kalliope said:
Article about the open letter in the big Danish newspaper Politiken. Behind paywall, though. The title is: 97 researchers alerts about an illness that made 38 year old Madelleine's life into a living hell

https://politiken.dk/forbrugogliv/a...es-liv-til-et-helvede?shareToken=tl_OpfAAJuiA
Click to expand...
I wonder if this is the same Madelleine who wrote an opinion's piece about ME in the same newspaper? Link was shared in the News from Scandinavia-thread. The opinion's piece was paywalled but sounds really good.. Maybe she or the Danish ME Association can share it openly in a while.
https://www.s4me.info/threads/news-from-scandinavia.647/page-46#post-229857
 
Kalliope said:
Per Fink on the other hand, while agreeing that ME patients is an overlooked group, point to his "excellent offer" for patients who are not bedridden. He hopes to expand his offer to the severe patients as well. He points out that CBT and gradual rehabilitation are methods that have the best documented effect.

“For us doctors, it is absolutely incredible that the Danish Parliament decides how doctors should diagnose a disease. What's next? Does the Parliament also have to make decisions about 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.
Click to expand...
I wished journalists were a bit sharper and didn't let him get away with such nonsense. Parliament didn't decide on how diagnosis should be made. They decided that Danish doctors should follow evidence-based International best practice.
Kalliope said:
I wonder if this is the same Madelleine who wrote an opinion's piece about ME in the same newspaper? Link was shared in the News from Scandinavia-thread. The opinion's piece was paywalled but sounds really good..
Click to expand...
Yes, it is the same Madelleine.

The 'paywall' can be circumvented by signing up for a free account with Politiken, no payment required. That's because both the opinion piece (excellent) and this article about the letter were links shared by Politiken subscribers. Politiken has a system where subscribers can legally share articles with as many people as they like. The person receiving the shared article doesn't have to be a subscriber but they need to have a (free) login.

It's probably not all that easy for non-Scandis to negotiate the sign-up procedure, but maybe those who can handle the Danish forms could do so to give those articles a bit of traffic to encourage more articles of the same caliber.
 
Here is more information from the Parliament on the upcoming meeting about ME on Tuesday 14th January.

It will be an open meeting with the minister of health arranged by the Health and Senior Citizen's Committee.

The minister has been asked to evaluate the assessment and treatment of ME-patients and asked whether he is considering other initiatives than what was decided by the Parliament in March 2019 (that ME is to be recognised as a physiological illness, more needs to be done for the patient group, WHO's classification system ICD10 and ICD11 is to be recognised and recommended and that ME shall be separated from functional disorders)

https://www.ft.dk/udvalg/udvalgene/SUU/kalender/46741/samraad.htm?fbclid=IwAR1CmBtd2dZa2Zcax6i3su1GwW7eAa8_n6qddmnwKiLwpJjySfjFvc1Z_ls

google translation:https://translate.google.com/transl...cax6i3su1GwW7eAa8_n6qddmnwKiLwpJjySfjFvc1Z_ls
 
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Kalliope said:
The minister has been asked to evaluate the assessment and treatment of ME-patients and asked whether he is considering other initiatives than what was decided by the Parliament in March 2019
Click to expand...
This is a google translation of the passage that was made last year

Proposed adoption:
The Parliament notes: - The efforts of patients with ME fatigue syndrome / CFS (G93.3) are deficient. Patients experience stigma and do not receive relevant offers of investigation and treatment. - That existing treatment for ME patients is far from adequate and that initiatives are being taken to create specialized treatment for ME. It should be done in a multidisciplinary setup with all relevant specialties and should be rooted in the somatics organizationally. - That the National Board of Health updates all relevant specialist guidelines across the entire course of the ME disease to ensure that ME / CFS (G93.3) is described in all relevant guidelines. - That the National Board of Health recognizes and recommends the use of WHO's diagnostic classification system ICD10 and ICD11, which includes the diagnosis ME (G93.3, ICD10 and 8E49 in ICD11). - The Health Code and the National Board of Health Data with the new code practice separate ME / CFS from the collective term 'functional disorders'. - That knowledge is obtained from other countries and initiated treatments of ME / CFS.

Source: https://www.ft.dk/samling/20181/vedtagelse/v82/index.htm
 
Kalliope said:
I wonder if this is the same Madelleine who wrote an opinion's piece about ME in the same newspaper? Link was shared in the News from Scandinavia-thread. The opinion's piece was paywalled but sounds really good.. Maybe she or the Danish ME Association can share it openly in a while.
https://www.s4me.info/threads/news-from-scandinavia.647/page-46#post-229857
Click to expand...
The opinion piece has been translated to English.
It is a very good account on the situation for ME patients in Denmark

https://docs.google.com/document/d/14KvPU0V0m5JGKvADOAiaiXw2vp1oYl3-62Qwd8xCTxg/edit
 
Another open letter has been written. This time by psychiatrist Per Fink and signed by 21 other doctors and researchers.

Sundhedspolitisk Tidsskrift has an article about the debate and with an interview with among others Per Fink:
Heftig debat om kronisk træthed er i højere grad preget af enighed end uenighed
google translation: Intense debate about chronic fatigue is marked more by agreement than disagreement

This is one of the things there is apparent agreement on.
  • There is a mental component to the condition, also to a greater extent than in other somatic disorders, such as rheumatoid arthritis and the like. This may be because it is basically a neurobiological disorder, but it is not known.
 
Kalliope said:
This is one of the things there is apparent agreement on.
  • There is a mental component to the condition, also to a greater extent than in other somatic disorders, such as rheumatoid arthritis and the like. This may be because it is basically a neurobiological disorder, but it is not known.
Click to expand...
The issue isn't over the existence of but over the importance of. Reality is this perspective is only important to a small group of researchers, to patients it is a sideshow. That has never changed and the current paradigm built exclusively on the mental component is in fact a complete disaster on every practical measure. Focusing on something that even if fully solved would have nearly zero impact on quality of life and capacity to function is counterproductive. Especially since it isn't close to be solved and has made no progress in decades while impairing all other areas.

So what patients need and demand is objective medicine that is actually relevant to the lived reality of this disease. What this group of researchers want is the opposite of that and pays no attention to the lived reality of patients. Does patient consent matter at all? Does it make sense to continue practicing medicine against explicit informed dissent? After evident failure of doing that for decades? Is patient agency a thing? Or should patients be dumb automatons whose lived reality is ultimately irrelevant to the perfection of isolated academic thought? Do researcher wants matter more than patient needs? This is the argument here.

This is a big test of patient engagement and it looks about to fail massively, it's just an aspirational, and mostly superficial, ideal that medicine actually rejects on principle. It will fail very badly as well, but will likely play a significant role in future class action lawsuits. Especially as the basic demand is literally "follow the science and quit making stuff up". Not going to age well.
 
Kalliope said:
Another open letter has been written. This time by psychiatrist Per Fink and signed by 21 other doctors and researchers.

Sundhedspolitisk Tidsskrift has an article about the debate and with an interview with among others Per Fink:
Heftig debat om kronisk træthed er i højere grad preget af enighed end uenighed
google translation: Intense debate about chronic fatigue is marked more by agreement than disagreement

This is one of the things there is apparent agreement on.
  • There is a mental component to the condition, also to a greater extent than in other somatic disorders, such as rheumatoid arthritis and the like. This may be because it is basically a neurobiological disorder, but it is not known.
Click to expand...

Anyone seen the text of the Fink letter?
 
Kalliope said:
This is one of the things there is apparent agreement on.
  • There is a mental component to the condition, also to a greater extent than in other somatic disorders, such as rheumatoid arthritis and the like. This may be because it is basically a neurobiological disorder, but it is not known.
Click to expand...

That is a pretty weird comment. I wonder in what sense somatic is being used. Any mental component is going to be neurobiological so the statement seems vacuous.
 
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