The way out of the dark rooms

Dear Emily,

I understand very well that you are in despair. After many years of having serious ME, she struggles with not getting the health care she needs, and not getting an education or a job.

You definitely deserve the savings, Emily. And you did not leave to yourself.

Research on ME disease has been conducted and is still being investigated. Whether here at home in Norway or internationally. Researchers are still searching for the cause, and no safe treatment has yet been found.

But we don’t give up! We still have a great need for more knowledge and a better treatment offer. I agree with you completely. Research is expensive, but not doing research is expensive Not alternative. Therefore, we ask the Research Council to continue to prioritize research on ME.

Living the good life is mastering your own life. Since we still know so little about me, it’s important to see each individual’s needs. ME is a serious illness for both those with the disease and relatives.

I think we have the ability to work better together, for the better for those who are sick.

First, we need a good health service for ME patients. The Norwegian Directorate of Health is on the way to suggesting measures to improve treatment and follow-up service for ME patients. They work alongside professional environments and patient organizations, and build on experiences gained from a pilot project at St. Olaf’s Hospital. This work will be completed in 2022.

For children and young people to have a school offer that they master, it is important that health services and educational institutions also cooperate well. There is a national guide for ME where education and measures to not lose education are also important.

I will contact the Minister of Education and Research to see how we can improve this collaboration.

I am interested in a disease that affects women in particular. ME is one such disease. We don’t know why ME affects women more than men.

In order to get answers to a number of questions about women’s health, a committee was formed to write a report (NOU) on women’s health and health from a gender perspective. This becomes important when the government presents a strategy for women’s health. You will be met with respect and understanding by the Health Service, Emily.

You write that you want to get out of bed, get out of your dark room, and participate in society. I think it’s great and important that you have ambitions, hopes, dreams and a willingness to contribute.

I also think that research will give us more answers, so we can give MS patients a better view.

While we wait for better treatment, I will do what I can to ensure the patient has a good life.

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