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.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the