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Ron Davis on why his NIH proposal was rejected

Ron Davis and Janet Dafoe had to watch as their son Whitney Dafoe deteriorated from an active, world-traveling photographer to bed-bound and at the edge of starvation due to ME/CFS.

Davis has built a world-class research team to study ME/CFS, including co-investigators from top institutions including Harvard and Stanford. Despite his team’s track record and expertise, their proposals to study ME/CFS can’t even get past the pre-proposal stage at NIH and were rejected twice without reaching the peer review stage.

As we mentioned in our post yesterday an NIH representative told CFSAC attendees the NIH has not been receiving quality ME/CFS research applications despite receiving applications from multiple researchers who have had no problem winning large NIH grants throughout their careers as long as they aren’t for ME/CFS research.

Ron Davis and his team, which includes Mike Snyder, Chair of Genetics at the Department at Stanford; Mark Davis, Chair of the Immunology Department; Ronald Tompkins and Wenzhong Xiao, professors of Surgery at Harvard Medical School; Steve Fodor; and Andreas Kogelnik of the Open Medicine Institute, submitted two pre-applications in March for grant proposals to study biomarkers in ME/CFS, which would look in-depth at severe patients.

Ron explained:

Both proposals were about finding Biomarker(s) for diagnosing ME/CFS using biochemical test that are accurate, sensitive, inexpensive, readily available and distinguished from all other diseases. This was one of the highest priorities of the IOM and P2P reports. Over the past several decades I have developed many of the technologies used for modern diagnostic testing.

One of the comments in the rejection letter was so mystifying that Ron replied, “This comment made me wonder if they had even read the proposal.” Ron wrote a detailed “response to reasons NIH refused to accept grant applications” and shared it with senior NIH officials. He and his wife Janet Dafoe have asked that we share his in-depth, thorough response so that NIH can’t continue to claim that they are evaluating ME/CFS research proposals on their merits.

The rejection from NIH and Davis’s response is a rare look inside the grant application process. Almost anyone who is interested in ME/CFS research should find this document eye-opening. We are very appreciative that Ron Davis and Janet Dafoe have shared this document with us. Our community has done an incredible job crowdfunding research, but raising research funds should not be put solely on the backs of struggling patients. It is time NIH steps up and starts funding ME/CFS research at a level proportionate to the disease’s severity, prevalence and impact.

As Davis concludes in his response to NIH’s refusal:

The IOM and P2P reports both state the urgent need for research support. This research proposal addresses many of the critical needs specified in these reports. This should be viewed as an opportunity for NIH to show leadership and quickly initiate research activity.

#MEAction is working on a lobbying campaign to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health, and move the research program to NINDS. Please read Help us get ME into the 21st Century Cures Act if you would like to learn more about this effort.

You can learn more about Ron Davis’s work and his efforts to fund his research:

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19 comments on “Ron Davis on why his NIH proposal was rejected
  1. Andrew says:

    The underlying message is clear – there seems to be a lack of available funding in the department budget and they are suggesting that they’d only fund the study if it was cheap.

    We need leadership from the NIH, not the same old platitudes and excuses.

  2. Rebecca says:

    Many thanks to the Davis family for sharing this document, and for everything they are doing for us. They are heroes.

    1. Jane Pannell says:

      Yes, Janet Dafoe and Ron Davis, thank you for everything you are doing. I wish your family all the best.

  3. LBalombini says:

    someone is in the NIH is either not doing their job or they are being told to not do their job.
    both are worrisome.

    1. Patricia Brown says:

      Something stinks in the whole thing. It’s obvious what the research is for, that it’s appropriate and desperately needed. I’m no doctor or researcher but even I can see that it’s a very worthwhile research project.
      Why is there such an avoidance of M.E./CFS/SEID research? This is like avoiding the Plague! Why wouldn’t you want to solve the problem?
      It does seem like there is another agenda to avoid spending the money.
      Please keep on trying. People are suffering terribly and dying.

  4. Ron Davis and Janet Dafoe, I can’t thank you enough for sharing this information with the community. This is just the kind of information we need and usually have no access to.

  5. Jaime says:

    I’m sure they didn’t figure anyone would see their response or care, but in a public position and in the age of the internet, guess what, guys? We can see when you respond to a legit team of researchers with a rude and arrogant brush-off.

    This is a fact-finding mission, and it’s incredibly necessary. Research can move very quickly when some money is put behind it. There isn’t enough public pressure because the people who need help the most are too exhausted to be heard, and their families are too busy taking care of them.

  6. Craig Kall says:

    Extremely disappointing for all, especially for those who suffer from ME/CFS like my daughter and sister. May wiser minds prevail. Good luck Ron!

  7. Annie says:

    Sorry, I can’t seem to find the document with Ron Davis’s response? Should it be there when I click on the writing in red saying ‘the rejection from NIH and Ron’s response’? When I click on it nothing happens. Thank you to Ron for making this public and for all he and his family are doing

    1. Hi Annie, that link should take you to the document here: http://www.meaction.net/wp-content/uploads/2015/08/ResponseToNIHRejectionsRonDavis.pdf
      Let me know if you still can’t see it and I’ll try another way!

  8. Caroline Dee says:

    NIH clearly lacks any kind of strategic approach towards this illness. As Carol Head said at CFSAC we don’t fit through this tiny hole of standard procedure when it comes to grant applications at NIH. Somebody at NIH has to come up with a real solution. Sigh.

    Are there any journalists we could get interested in this grant rejection? Could be an interesting topic for the media.

  9. Jeremy bearman says:

    The nih have been scornful and contemptuous of ME for 30 years.
    They will not fund research into this illness if there is any way they can avoid doing so.
    Top researchers being told their ME research proposals lack merit or were poorly formulated is an evil fabrication on the part of the nih.
    Dr Collins I don’t know how as an evangelical Christian you are presiding over this terrible travesty.

  10. Sarika ( Sara) says:

    Thank you for sharing. This is a real shame! Ron Davis and Janet Dafoe: your work and fight is invaluable to our ME/CFS community.

  11. Mary Ann Kindel says:

    This reminds me of the denial response you get when applying for Social Security Disability. Hopefully, there is some similar sort of path of appeals where if you keep appealing denials, you eventually get to someone with half a brain who has the authority to approve things which are a little outside the box. Otherwise, we need to make noise until we can get an approval.

  12. Marilyn Lemmon says:

    Many thanks to Ron Davis and Janet Dafoe for sharing this. Having been involved in biomedical research myself (although not at the grant writing level) I can attest to the often narrow, bureaucratic mind set of the funding agencies. I was also involved in research at Stanford, and it seemed like the more innovative the grant proposal, the less likely it was to get funded. There is also clearly issue with the funding amounts, which for this grossly underfunded illness is hard to fathom. The question is, what can we as patients do to change this?

  13. Beverly says:

    Reading this makes me feel nauseous!

    Thank you Ron Davis for continuing to fight for us against these odds.

  14. It is either M.E. or it is CFS it cannot be both. In actual fact it does not really matter they are both only labels and in their eyes M.E. does not exist because CFS is enslaven to it – a move that came about in the production of the 2nd definition. For the NIH to extensively fund M.E. research in its own right is never going to happen – it would be like a house of cards. Everyone will have to read my soon to be published book – Beyond the Birdcage.

  15. cathrine Engsig says:

    THis is not the support that the IOM report explicit asked for. The NIH is not acting in the interest of patients. One could be suspecious that there is a second agenda here that we dont know of. Thank you to Ron for keeping up hopes all the way to Denmark where I write from

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