Patients send Norwegian Research Council over 700 research ideas

The Norwegian Research Council has announced that it received 737 research proposals from ME/CFS patients and their families in response to a call for ideas in April. Patients and others were invited to send in their ideas by May 3, using a short online form.
In the call for proposals in April, Mr Hallén had said, “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 Council said that the proposals showed “a very large need for knowledge about everything” on a range of topics from diagnostics and causes to treatment and care.  They added that many patients said that “knowledge about the disease among health workers is inadequate”.
Managing Director of the Research Council, Arvid Hallén, said that he was impressed with both the breadth and quality of many of the ideas, and that they would form a good basis for further work.
The Council will now put together a stakeholder panel, including patients and their families, clinicians, researchers and health officials, to discuss the proposals and prepare a funding announcement. The composition of the panel will be published in May.
ME/CFS was the first disease for which the Research Council has gathered proposals in this way but the Council intend to use it for other conditions. Mr Hallén said, “Often, users have been forgotten”.
He said the decision to start with ME/CFS was made in consultation with the Ministry of Health and that the illness was chosen “because this is a disease we do not know enough about, but many are affected. And maybe precisely because understanding of the disease and suffering is not good enough, users will be able to provide valuable input”.
UK charity Invest in ME has just announced that the Norwegian Research Council have accepted their invitation to attend their international biomedical research conference in London in early June.

Facebook
Twitter
WhatsApp
Email

1 thought on “Patients send Norwegian Research Council over 700 research ideas”

Comments are closed.

Latest News

You’re Invited: The Beth Mazur Innovation Prize Fundraiser

You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST. Beth Mazur, who co-founded #MEAction was a kind and compassionate human being. She cared deeply about the ME and the Long COVID communities. She also cared deeply about innovation, new creative ways to solve problems that

Read More »
rectangle image with a purpleish marble background. In the center is a blue square with the words a very modified movement class - nov 15th-. the #MEAction logo and nourish therapeutic yoga logo at the bottom.

A Very Modified Movement Class on 11/15

Join #MEAction for our final very modified movement class of the year on Friday, November 15th at 11am PST/2pm EST/7pm GMT. This class has been crafted specifically for people with ME. This 30 minute class will be hosted virtually. We are, once again, thrilled to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga, who has

Read More »
A photo of a blue background with a marker pen drawing of an arrow hitting a target surrounded by the words strategy, plans and goals. A red marker pen is in the bottom right corner and the ME Action Scotland logo is at the top.

#MEAction Scotland publishes refreshed strategic priorities

#MEAction Scotland has refreshed and updated its strategic priorities for the period 2024-2026, in anticipation of the expected Scottish Parliament elections in May 2026. We continue to work towards our vision of a Scotland where health and social care professionals, politicians and policy makers, and the general public understand and support people with ME and

Read More »
Scroll to Top