The National Institutes of Health finally announced their Request for Applications for a funding opportunity for the first ever Data Management Center and Collaborative Research Centers for ME/CFS.
After decades of effort by people with ME/CFS, their families, advocates and researchers to get research dollars increased for ME/CFS, the much anticipated announcements finally came. With bated breath we all checked out the dollar amount that was to be made available. As simply as possible, here is how it lays out, with links to the two RFAs where you can read more:
•For Data Management the NIH will “commit an estimated total of $750,000 direct costs to fund 1 award contingent upon NIH appropriations and the submission of a sufficient number of meritorious applications.” and “Applicants may request up to $750,000 direct costs per year.”
•For Collaborative Research Centers the NIH “intends to commit $6 million in FY 2017 to fund 2-3 awards. Future year amounts will depend on annual appropriations” and “Application budgets are limited to $1,200,000 per year, and need to reflect the actual needs of the proposed project.”
Dr. Vicky Whittemore stated at the January CFSAC meeting that “overall there’s a total of around $29,750,000 over five years” to be made available. The positives with this picture is that it will help and there is a lot of good in the specifics of the RFA’s. The NIH has finally actually made a commitment to help build essential infrastructure that the research field desperately needs. We will actually have Collaborative Research Centers (CRCs) – a major milestone for ME/CFS. This funding will help multidisciplinary investigative research and enable stronger collaboration and help draw in more researchers. Eventually – it will help increase the number of standard grant applications in the field.
The bitter pill to swallow, and something we have highlighted before as a possibility, is that this funding is actually going to be awarded out over a 5 year time frame. The commitment over time is good but the level of funding is agonizingly low and slow, naturally that will mean less study that also takes longer to complete. $6,000,000 will be committed in the first year for the Collaborative Research Centers (CRCs). The NIH states that application budgets for the CRC awards are limited to $1.2 Million and that they plan to award 2-3 centers.
The funding is not a one off injection of funds to get things moving fast, it is the equivalent of putting in an IV of saline and setting the fluid go through at a slow rate.
Money talks! It seems that Dr. Whittemore at the NIH had to work hard to get the commitments of funding from all the contributing institutes, you can read more about this on Cort Johnson’s blog about the RFAs here. We highly recommend that people listen to or read if they can the transcript of the advocacy call with the NIH that was held on the 1st of February.
The latest funding news is progress but it leaves a sour aftertaste, this funding is a lot slower and lower than what is needed and what we all hoped for!
What could this announcement mean for the Center for Infection and Immunity ME/CFS research?
If the CII team are successful with their RFA application proposal, this funding would clearly help the institution to become a CRC and help to fund the analysis work involved in the monster study – albeit slowly. If you’ve missed it, this study is not only about microbes and viruses, it was hugely expanded to include immunology, metabolomics, proteomics, genetics and epigentics.
Dr. Lipkin and Dr. Hornig and their team at the CII have been building a strong base over time. They have systematically been building the foundations for a Center of Excellence with this work along with the monster study that the Microbe Discovery Project and global ME/CFS community has been fundraising for.
With the announcement of the RFAs the team at CII shifted into top gear! Meetings and plans are shaping up and going well, the enthusiasm and momentum that is building at the CII has become palpable!
This world renowned public health institution with their phenomenal skills are throwing their full weight into this funding opportunity for ME/CFS research. The CII team has a history of being able to win significant awards for large projects but there is no guarantee. We should find out in September if they are successful!
Mini monster study update: As we speak the CII team are finishing the 4th and final assessment of their large amount of information and sample collection for the Monster study. This has been a HUGE undertaking and they have been successful with enrolment retainment – a major achievement! Thank you so much to all the study participants and donors – you all made this possible!
Fundraising $5 MILLION for CII!
If the CII are successful with their RFA proposal the Microbe Discovery Project will still continue our fundraising efforts, with the same target of $5 Million. In total, $10Million would be required for CII to do the strongest and broadest range of analyses needed on all of the collected samples for the monster study and this does not even take into account other needed studies that they are seeking funding for. Researchers need far more than is forthcoming!
The rate of funding available for successful applications to the Centers’ RFA is very low and slow. ME/CFS researchers are still up against major difficulties with the standard grant process for investigative research especially, but also for hypothesis driven research. It is incredibly important to support with extra funding for the CRCs that the NIH establishes. It is going to be essential to power them up, so that they can come out of this funding round with very solid findings which will help attain future grants.
Once researchers are in the system properly and the system has started to work for them, all the cog wheels begin to fall into place with established funding streams – but we are still far from this point.
We need strong multidisciplinary investigative research much faster, to develop better understanding of the disease heterogeneity in order to discover possible treatments that will tailor to fit patient phenotypes!
People with ME/CFS shouldn’t have to fundraise their way to biomarkers and treatments faster, but until the authorities take this more seriously with the urgency it warrants and deserves we will have to help great researchers get established!
To date the total raised is $140,430 from 292 donations – thank you so much! Fortunately, there is a direct correlation between the number of donations and the amount raised getting higher and donations are coming in every day! Please help us reach the 500 donations mark and donate HERE.
2018 could be a huge year for ME/CFS!
ME/CFS may be on the cusp of a major shift, momentum is building and 2018 is tracking at the moment to possibly being very exciting. The Rituximab 3rd phase trial results will be out. This is often the make or break phase for drug trials but even if that trial has 50% efficacy and treats a ‘subgroup’ of patients this sends a clear message to mainstream medicine and health authorities. Rituximab does not ‘treat’ any supposed faulty thought process – and that should really challenge perceptions of ME/CFS.
It could not be timed better that Jennifer Brea’s Sundance Award winning film ‘Unrest’ will hit mainstream audiences around a similar time frame, not forgetting there is also more research publishing to come between now and then.
Our numbers are set to grow along with evidence that we can leverage to shift the status quo!