Small Steps of Progress

Progress, no matter how small, is still progress. Any tiny incremental change advocates can achieve is improvement, and it’s important to acknowledge when it happens. I am pleased to report that NIH has taken a small step towards providing more transparency in its ME/CFS grant reviews.

During the November 2nd telebriefing by NIH, Brian Vastag asked about the makeup of the CFS Special Emphasis Panel. That is the committee that reviews and scores ME/CFS related grant proposals. The SEP went through a period of years where there were almost no ME/CFS experts involved in grant review, and so Brian’s question was important.

Dr. Joe Breen of the National Institute of Allergy and Infectious Diseases answered, saying that there were ME/CFS experts involved. He also said that the SEP rosters were available to the public, and we could examine them at any time.

I knew this was not true.

Back in 2013, I attempted to investigate the composition of the SEP, and Don Luckett at NIH told me that the rosters are not posted online “due to threats some previous panel reviewers have received.” He told me to file a FOIA request to obtain the old rosters.

It ended up not being so simple, and it took me two years to obtain those rosters. Furthermore, NIH required me to file a FOIA request after each and every SEP meeting in order to obtain the new rosters. It was a time waster for me and for FOIA staff, especially because every other grant panel roster is published on the Center for Scientific Review website.

So after the November 2nd telebriefing, I immediately wrote to Dr. Breen to bring all of this to his attention. Dr. Breen did some swift follow up, and this week he informed me that the SEP rosters will be available thirty days prior to each meeting.

The next meeting of the CFS SEP is December 6, 2016, and the roster is available. The grant reviewers will be Dr. Fred Friedberg, Dr. Nancy Klimas, Dr. Kathleen Light, Dr. Edward Mocarski, Dr. Peter Rowe, and Dr. Roland Staud. All have served on previous SEPs.

It seems like a very small victory that we will be able to see the rosters in advance. But this is a small move towards increased transparency at NIH. It is also a step in the direction of equality. Other disease areas have their rosters posted; now we do too.

My thanks to Dr. Breen and the Center for Scientific Review for making this small bit of progress possible.

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21 Responses to Small Steps of Progress

  1. It is incredible how hard you have to work to get something that should simply be available, and, as you noted, is available for other panels.

    Literally, unbelievable.

    From a store, if it’s like mine, of zero energy.

    Thank you for your sacrifice for the rest of us.

  2. Gill Bigglestone says:

    Thank you Jennie.

    I repeat Alicia’s thanks for staying on top of the smallest detail so as to ensure we are heard.

    It is progress, small but progress.

  3. Cindy says:

    Thank you for your continued advocacy and informative blog, Jennie. Baby steps give us HOPE. Thank you, thank you, thank you…..

  4. Anonymous says:

    Thank you for pursuing the SEP composition all this time and thank you also for contacting Dr. Breen and getting the rosters made available.
    🙂

  5. leelaplay says:

    Well done. I tried to do this a few years ago and failed. Absurd that we were the only SEP with no transparency. And no one would change it for years. Dr Breen should be commended for having ethics and backbone.

  6. Joe Landson says:

    I guess this is progress. However I’m having trouble being encouraged by ‘progress’ that involves correcting mistakes that never should have been made, and fixing lies that never should have been told.

  7. Cecelia says:

    Thank you for “watching the store”. When people are watching and paying attention, those who are being watched tend to do better.

  8. Patricia Hirst says:

    I agree with everyone, thanks for your tenacity 😊 Baby steps for sure!

  9. Linda Sleffel says:

    Thank you for all the time and energy you are giving to this issue. We do have to be grateful for small amounts of progress, and we have to hope it will come in larger amounts in future.

    Thanks again; you do amazing work for all of us.

  10. There’s another step of progress here – the content of the panel. For years we’ve had all kinds of people who didn’t know anything about our disease – even dentists. This is a real panel.

    Thank you for all the work this took. Not to mention the perseverance.

  11. MS says:

    While we’re at it, let me address another question that was asked. Someone asked about if other institutes like the cancer institute (NCI) or the nursing institute (NINR) were part of NIH’s efforts and the answer was ‘Yes.” as they are part of the Trans-NIH ME/CFS Working Group. But that’s not the only issue; the more pressing one is whether these institutes provide funding and the answer, as far as I know, is NO. When grant announcements are made, you can see on them which institutes are the sponsoring ones. Currently, NIAID (infectious disease, allergy, immunology) and NINDS are the main funders of ME/CFS research whereas other institutes have provided no funding. They used to, even a few years ago, but they pulled out. Without multiple institutes willing to chip in each a little or one/ two institutes providing a lot of money, we’re still left with little $$ for this field.

    • Jennie Spotila says:

      Actually, this is not correct. The 2016 grants to Friedberg and Staud are both from NINR. If I recall correctly, Dr. Friedberg’s grants have always been funded by NINR. Dr. Saligan’s intramural work has also been funded by NINR.

      • MS says:

        Were the grants related to grant announcements specifically about ME/CFS or about something else? For example if NINR put out a non-specific grant about behavioral measures related to chronic disease (i.e. anyone investigating any chronic disease can apply )and someone wrote a grant related to ME/CFS about it, then yes, you can say NINR funded ME/CFS research but it is not under the original grant for ME/CFS. What I am talking about are the grants specifically soliciting work related to ME/CFS and not the multitude of creative ways researchers have to resort to to get funding.

        For example, this expired program announcement specific for ME/CFS states the multiple institutes sponsoring it and the ones who withdrew in 2014, including NINR:
        http://grants.nih.gov/grants/guide/pa-files/PAR-12-032.html

        The newer Notice of Intent contains NINR but multiple institutes are still missing like NCI:
        http://grants.nih.gov/grants/guide/notice-files/NOT-AI-16-046.html

        There are 20+ Institutes and for a multi-system disease, funding should come from more than only a few places.
        The reason why ME/CFS-specific grants are important is when researchers look for funds the first thing many often do is look for grants directly connected to the condition they are studying and then look for non-condition related grants that might apply. There is less competition for the former vs. latter.

  12. Christine Fenton says:

    Thank you for your ongoing efforts. That your efforts are successful is a real boost.

  13. Jane Pannell says:

    Once again, thank you, Jenny. Your brains, tenacity, and commitment are so appreciated. I know my comment represents so many people who don’t even have the energy to post a comment. Keep up the good work. Take good care of yourself. We love you.

  14. Aaaa says:

    Thanks for your efforts.
    Can I ask what does this mean ( if anything ) for future ME/ CFS grants ?

    • Jennie Spotila says:

      For the actual grants, it means little. However, this change in policy now gives more transparency on who is serving on the grant review panels for the CFS SEP. This means that we will know in advance if there are scientists with no ME/CFS expertise (or a particularly psychosocial approach) serving on the panel. And it saves us the trouble filing a FOIA request for each and every meeting.

  15. Marc Simon says:

    There seems to be a pattern here – namely whenever some administrator within the NIH / CDC makes a decision concerning CFS/ME research that might be politically controversial, they have the option of invoking the specter of “the threatening and unbalanced ME/CFS patient” and keeping the details of such decisions secret. We are then forced to resort to FOIA requests in an attempt to figure out what exactly is going on in our government.

    This strikes me as a systematic abuse of government administrative authority. While it is nice that Dr. Joe Breen chose not to continue this pattern of abuse I’d rather not depend on the good faith of other administrators – especially considering the incipient changes in the executive branch of our government.

    Would some sort of lawsuit be able to establish limits in the ability of government administrators to engage in such behavior? I am sure many other groups of citizens would feel their interests served as well in establishing such limits.

  16. Simone says:

    Thank you so much for continuing to hold NIH to account. Your relentless pursuit of transparency has been astounding. Thank you for following up with Dr Breen, and for this win!

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