Case Definition: The report also suggested NIH undertake “an initiative to reach consensus on the case definition.” NIH said no. Specifically, NIH said, “Developing better diagnostics and ways to characterize patients are necessary before reaching consensus on a case definition” (emphasis added).
I actually agree with this specific point from the NIH. We already have consensus definitions, and we need biomarkers more than anything else to do with definitions. However this would be best served by ringfencing funding for biomarker discovery, and especially diagnostic biomarkers. Claiming this, without funding, is saying there is a clear line of research and then failing to fund it.
Let me be clear though ... we have oodles of biomarkers. Just the ones we have need lots more investigating. Some combination of the existing ones might be diagnostic, or provide multiple diagnostic tests. So for a start it would be necessary to have the funds and other resources to investigate those.
The reason why I agree with the NIH on the basic idea, though not failure to fund, are both scientific and political. First, definitions based on biomarkers are much stronger, and it accelerates research into treatment and cure. Second, alternative views of what CFS is, including a psychogenic disorder, have more latitude with consensus definitions. Once we have biomarkers that diagnose ME and CFS then they wont be as able to run sham studies any more without being at least heavily scrutinised.
Private donations, including crowdfunding from patients, is how we are getting a lot done right now. However grants provide funding certainty. Right now ME and allied diseases may be costing the world a trillion dollars a decade ... and we spend less than a hundred million per decade on research, way less. Also too much is spent on psychiatric research, I think in part because they can seemingly make overblown claims without consequences. They promise the world, they promise financial savings, and they deliver .... ?
I look forward to ideas on how to advance research funding, including the next blog. I do think we need to determine clear objective goals, and then push hard for those specific things.
