Some of you may have seen this thread, started by @Kalliope, on the Norwegian Research Council's very exciting call to patients, carers, doctors and others to submit their ideas for research to help patients. The deadline is May 3 (just under three weeks away).
I don't know whether a national research council has ever asked patients to submit ideas for research before - either way, this is a fantastic opportunity for all of us! @Mark is keen for Phoenix Rising members to contribute, and I've offered to organise it.
You can help in two ways: (1) by putting forward the most important ideas that the Norwegians should be considering and (2) voting on the ideas so that we can tell the Council which ideas patients here think the most important.
Of course, we're not all Norwegian but we're all patients, and any country's research agency should want to hear the best ideas. Interestingly, Norway seems to be using ME as the first disease that they're using this consultation process for, in recognition of the fact that they don't know enough about it.
A focus of the call is on things that would have a short-term payoff but the call doesn't seem to be limited to that.
The call talks about "diseases with prolonged fatigue" and although it clearly talks about ME/CFS, the definition being used might be quite broad so there are points that could be made about that. They say:
If you have one or more ideas, please put each one into a single post with a subheading in bold (I'll give an example in the post below).
Please do your best to answer each of these questions in no more than 180 words (1000 characters):
Please get your proposal into shape on this thread by 20 April and then I'll set up a poll to run 22 to 26 April. It would be great if there was lots of voting - large numbers will help to get the Research Council to take this seriously.
Let's get cracking!
I don't know whether a national research council has ever asked patients to submit ideas for research before - either way, this is a fantastic opportunity for all of us! @Mark is keen for Phoenix Rising members to contribute, and I've offered to organise it.
You can help in two ways: (1) by putting forward the most important ideas that the Norwegians should be considering and (2) voting on the ideas so that we can tell the Council which ideas patients here think the most important.
Of course, we're not all Norwegian but we're all patients, and any country's research agency should want to hear the best ideas. Interestingly, Norway seems to be using ME as the first disease that they're using this consultation process for, in recognition of the fact that they don't know enough about it.
A focus of the call is on things that would have a short-term payoff but the call doesn't seem to be limited to that.
The call talks about "diseases with prolonged fatigue" and although it clearly talks about ME/CFS, the definition being used might be quite broad so there are points that could be made about that. They say:
Norwegian Research Council said:Prolonged and pervasive fatigue, with or without pain, is a serious and relatively common disease state. The state has several designations, as CFS (Chronic Fatigue Syndrome) and ME (myalgic encephalopathy). It is characterized by the disease causes are complex and unclear, it is not found biological markers for the condition and that there is scientific disagreement about the symptom-based diagnostic criteria.
If you have one or more ideas, please put each one into a single post with a subheading in bold (I'll give an example in the post below).
Please do your best to answer each of these questions in no more than 180 words (1000 characters):
- In what area do we need new research into CFS / ME ? (Max. 1000 characters )
- What specific issues should be investigated further ? ( 1000 character limit )
- Why is this important for this population ? (Max. 1000 characters )
- Why is this important and useful for therapists ( health ) ? (Max. 1000 characters )
Please get your proposal into shape on this thread by 20 April and then I'll set up a poll to run 22 to 26 April. It would be great if there was lots of voting - large numbers will help to get the Research Council to take this seriously.
Let's get cracking!