NIH - Staying the Course to Where?

[Denise]

From the Occupy CFS post on NIH, the clinical study, RFA's and more:
"Dr. Francis Collins, Director of the National Institutes of Health, made a request of the ME/CFS community. During the March 8, 2016 NIH telebriefing, Dr. Collins said:
So please take our commitment with great seriousness. Please also stay the course with us as we seek to identify the most compelling research questions and how we could address those. (emphasis added)

But what precisely is the course Dr. Collins has asked us to stay on? We cannot answer that question yet, but we can begin to sketch out the map. We can also identify the elements we expect. ..."

http://www.occupycfs.com/2016/05/03/staying-the-course-to-where/

 

[anciendaze]

There was an obvious response by some patients in Norway with severe ME/CFS to depletion of CD20+ B-cells with Rituximab. These may not have been permanent cures, but they definitely did move the pathological state in a way that virtually no other intervention has done. This was done at a time when the controversy over XMRV was taking place, and published in 2011. No such organized experiments have taken place in the U.S.

There was evidence published by Carmen Sheibenbogen's group at Berlin's Charite hospital that about 30% of their ME/CFS patients showed detectable autoantibodies to beta-adrenergic or muscarinic cholinergic receptors. (These are only a couple of possible autoantibodies. Doctors in private practice regularly find patients with autoantibodies to thyroid or cardiolipin who might well be excluded from research cohorts as having a different disease.) They now have a study in progress to treat these patients with plasmaphaeresis. The benefits may not last and this may not be a practical treatment option for the majority of patients but it definitely narrows the search for causes rapidly. This is an example of how to change the scientific picture quickly.

Current NIH plans point to studies that will start publishing results in about 3 years. We can expect their conclusions to be contested. We can also expect another battle over treatment options after biomedical problems are identified. Once there is a consensus about good treatment options we can expect a battle over costs, with the recurring refrain that this is not a lethal disease. Realistic expectations would put broadly accepted interventions about 10 years away. In the meantime desperate patients who have money will likely seek treatment in Panama, Costa Rica or Cuba.

We see evidence that NIH has shifted policy from ignoring CFS to studying the problem. The question of how long it is possible to study the problem without solving it remains.