This is potentially great news!! The Research Council of Norway wants ME-patients to take part in decisions on what kind of research projects they should prioritise
Here a google translation from the Norwegian broadcaster NRK from today:
Want input from ME patients
Now patients with ME, or chronic fatigue syndrome, be deciding what that should be researched in terms of this disease.
Research invites ME patients to provide input that will form the basis for new research projects.
Other affected, as relatives and therapists can make suggestions. Managing Director of the Research Council Arvid Hallén says they have great expectations:
- We hope to get input on issues and problems that nobody has thought of before, but which are important for those who are directly affected by these disorders.
The suggestions should be sent via a form that will remain over a month on the Research Council website. A user panel with both patients and scientists will then be based on the submitted suggestions and concretize research projects.
- The aim is to produce results quickly be able to put to use, says Hallén.
ME Association positive
Norwegian ME Association, which is the largest association for these patients, is pleased that Forskningsgrådet go out and ask for input from those affected.
- This is a very good initiative from Forskninsgrådets side, and it suggests that they take ME patients seriously, said Secretary General of the association, Olav Osland.
He hopes this will help ensure that the treatment offered ME patients is improved.
Other groups
It is the first time the Research Council go out and gather input on this way. But it will not be the last. Hallén, say they want to let other affected groups to offer their insights on what they think it should be researched at:
- This is the first part of which shall be consistently, there to draw users into the identification of research needs. Often, users have been forgotten, he said.
Conscious decision
Hallén said the decision to start with ME patients is done in consultation with the Ministry, and that choice is deliberate.
- That's because this is a disease we do not know enough about, but many are affected. And maybe precisely because the understanding of disease and suffering is not good enough, users will be able to provide valuable input.
Here a google translation from the Norwegian broadcaster NRK from today:
Want input from ME patients
Now patients with ME, or chronic fatigue syndrome, be deciding what that should be researched in terms of this disease.
Research invites ME patients to provide input that will form the basis for new research projects.
Other affected, as relatives and therapists can make suggestions. Managing Director of the Research Council Arvid Hallén says they have great expectations:
- We hope to get input on issues and problems that nobody has thought of before, but which are important for those who are directly affected by these disorders.
The suggestions should be sent via a form that will remain over a month on the Research Council website. A user panel with both patients and scientists will then be based on the submitted suggestions and concretize research projects.
- The aim is to produce results quickly be able to put to use, says Hallén.
ME Association positive
Norwegian ME Association, which is the largest association for these patients, is pleased that Forskningsgrådet go out and ask for input from those affected.
- This is a very good initiative from Forskninsgrådets side, and it suggests that they take ME patients seriously, said Secretary General of the association, Olav Osland.
He hopes this will help ensure that the treatment offered ME patients is improved.
Other groups
It is the first time the Research Council go out and gather input on this way. But it will not be the last. Hallén, say they want to let other affected groups to offer their insights on what they think it should be researched at:
- This is the first part of which shall be consistently, there to draw users into the identification of research needs. Often, users have been forgotten, he said.
Conscious decision
Hallén said the decision to start with ME patients is done in consultation with the Ministry, and that choice is deliberate.
- That's because this is a disease we do not know enough about, but many are affected. And maybe precisely because the understanding of disease and suffering is not good enough, users will be able to provide valuable input.