A Candid Discussion with NIH Director Francis Collins

carol-zaher-with-francis-collinsEarlier this week at FasterCures’ Partnering for Cures conference in New York, Solve ME/CFS Initiative President Carol Head and VP of Research and Scientific Programs Dr. Zaher Nahle met with Director Francis Collins of the National Institutes of Health (NIH) for a private conversation regarding ME/CFS.

The trio discussed efforts at the NIH to strengthen research on, understanding of, interest in, and clinical studies for ME/CFS. Given the upcoming government transition, the meeting’s focus was on how to maintain progress made so far after the transition and improve outcomes for ME/CFS. Dr. Collins could not offer insight as to the future of his position at the NIH but agreed that the vital progress ME/CFS has made thus far must be protected and bolstered. Dr. Collins acknowledged the past disservice and delay in regard to ME/CFS and committed to continue to support progress moving forward.

Dr. Collins also addressed the recent lecture conducted by the controversial Dr. Shorter and acknowledged the strong response of the patient community. Dr. Collins assured Carol and Zaher that the incident would not impede progress on the disease and committed to ensuring that the NIH would continue to use science and research to guide its decision-making process. Dr. Collins then strongly urged SMCI to continue building bridges in order to bring the ME/CFS community together.

SMCI President Carol Head said of the meeting, “It’s very rare for any disease to receive such a high-level meeting—and we recognize that it indicates Dr. Collins’ commitment to ME/CFS. And at the same time, we cannot predict what will occur if a new NIH director is appointed.”

7 comments on “A Candid Discussion with NIH Director Francis Collins

  1. Collins apparently has funds that he can apply to ME/CFS if he so chooses. I hope that if he feels he is not going to be retained that one of his last acts is to funnel some more money our way.

  2. Newt Gingrich wanted to double NIH, since this is good ROI, invest billions to save likely trillions in the future, for a growing and aging population. Newt may be providing Trump with some advice. This is how new president can help “Make America Great Again”. It is good business, very high ROI, and some efforts may fail, but overall masjor R&D leads to major progress, so overall healthcare saving can be huge, delivering better healthcare than ever, to more people, at lower cost. Funding R&D at higher levels now, also increases economy short term to mfg diagnostic instruments, do R&D, that then will give ROCE and more healthy, working people who can then no longer be home ill, costing billions, but instead making tens of billions for US incl exports, thus reducing national debt. These healthy workers to execs can pay taxes, again good for the whole economy, bipartisan, from the janitors, manufacturers incl pharma and diagnostics to R&D and CEO’s. We should all not just ask this, but demand this, since this is morally and economically the right direction to take.

    • The last time the NIH budget doubled, the total NIH spending on CFS research stayed the same. More money for the NIH does not translate to more money for CFS research. Chances are that an increased budget for intramural studies at the NIH will most certainly not help the CFS community – they might use a tiny amount of it to invite Edward Shorter to make more presentations though.

  3. We may as well sock it all away for 4 yrs with this regime coming in…we’re going to be lucky to keep our ssdi never mind get research money…we can save up, do some independent research and hit the next admin up for help. The last people getting help from this group is disabled people with an illness you can’t see or readily prove. I hope some of you have more Hope but this betrayal by so many people in my gender and demographic has, I believe, put the fire to my pyre. I have no hope left in my spirit. I’m afraid to leave the house and am making plans to be invisible and keep daily details of my struggle and doc visits for when my ssdi recheck comes up.

    • no administration has ever been good to patients with ME/CFS, so a trump administration will probably be as good or bad as any previous one.
      dr collins has been ducking out of his promises and committments to greatly ramp up the scale of CFS/ME research. he has paid lip service and wants to save face and appear to be doing the right thing for us, but it seems the best he is capable of or willing to indulge in, is a litany of false promises leading to false hope. i have difficulty believing how someone so religious and self righteous, and who frenetically posts on twitter about all sorts of amazing medical projects and initiatives happening in the nih, can lie with such a straight face to so such a big constituency of patients, who have been so cruelly underserved by the nih and its tentacles

  4. We new people you have the opportunity to present your case again. I’d emphasis that NIH has not been allocating funding equitably. That is the number of people affected by a disease vs. the amount of money spent. This is a business oriented approach.

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