The National Institutes of Health (NIH) finally announced funding for the first ever Data Management Center and Collaborative Research Centers for ME/CFS. The funding will be made available through the NIH’s process of Request for Applications (RFA).

Our take-away is that 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 letting the fluid go through at a slow rate. The funding is progress, but it leaves a sour aftertaste; it is a lot slower and lower than what is needed and what we all hoped for!

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.

The total amounts to $29,750,000 over a period of five years. On a yearly basis that breaks down as $6 million per year to fund 2-3 RFAs for the Collaborative Research Centers, and one RFA will be awarded for $750,000 for the Data Management Center.

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 – 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, which means less study that takes longer to complete.

The money for the ME/CFS RFAs came from various institutes at the NIH since ME/CFS is not housed in one institute. It seems that it was difficult to get the various institutes to contribute,which you can read more about on Cort Johnson’s blog about the RFAs here.

For 2017, the National Institute of Allergy and Infections contributed $2.5 million; the National Institute of Neurological Disorders and Stroke gave $2 million; the Office of the Director contributed $1 million but seven other institutes – who all have representatives on the Trans-NIH ME/CFS Working Group – only threw in $250,000 each.

We highly recommend that people listen to, or read, the transcript of the advocacy call with the NIH that was held on the 1st of February. You can also read a summary of that call here.

What could this announcement mean for the Center for Infection and Immunity ME/CFS research?

If the Center for Infection and Immunity (CII) team is successful with its RFA application proposal, this funding would clearly help the institution to become a Collaborative Research Center, and would 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.

Ian Lipkin, M.D. and Mady Hornig, M.D., and their team at CII have been building a strong base over time. They have systematically been building the foundation 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 has 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 its phenomenal skills is throwing its 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!

Dr. Hornig and Dr. Lipkin doing the Chili M.E Challenge for ME/CFS

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 enrollment 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 is successful with its RFA proposal, the Microbe Discovery Project will still continue its fundraising efforts, with the same target of $5 million. In total, $10 million 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 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.

Find out more about the Microbe Discovery Project