As things stand right now, one could say that it takes 20 years to get 1 year’s worth of ME/CFS research done. Why? Because the level of funding allocated for ME/CFS research is 20 times lower than that of comparable diseases.
For example, the NIH spends around $120 million per year on research about MS. The figure for ME/CFS is $5 million per year. (This in spite of the fact that ME/CFS affects at least as many citizens as MS, perhaps even twice as many.)
This means that it takes ME/CFS researchers 20-25 years to accomplish what MS researchers can get done in one year.
Actually it’s even worse than that. At least MS researchers are able to focus on damage to myelin covers of the nerves and spinal cord. Lacking a specific cause for ME/CFS, researchers, on the other hand, are all over the map. Many efforts are surely chasing ‘shadows’; i.e. secondary manifestations of the disorder that more obscure than illuminate.
At this pace, many years of many lives will go by before disease mechanisms, biomarkers and treatment are finally unveiled for ME/CFS. On the other hand, if ME/CFS was granted a level of funding on par with other high-impact diseases, we could quickly see very promising progress.
A case in point illustrating this:
In June 2012 the Open Medicine Institute (OMI) convened a round table forum in New York City for 27 international ME/CFS researchers, the OMI-MERIT group. Their goal was to identify and prioritize potential research projects into ME/CFS that could deliver practical results for patients in the shortest amount of time. In 2013 OMI-MERIT published their list of 10 prioritized project that would quickly create ground-breaking progress in the ME/CFS field. They have also estimated costs for these projects.
- See the list here and see detailed project descriptions plus a roll of the researchers involved in OMI-MERIT
OMI-MERIT estimates that $13.502 million in total will be needed to complete all of these projects. Some of them are urgently needed, like a confirmatory Rituximab study, an international biobank and the search for biomarkers via protein panels and immunologic studies.
At first glance, the figure of $13 million seems large. However, it could easily be covered if the yearly NIH funding for ME/CFS was raised to an equitable level. A budget matching that of MS, $120 million per year, would cover all the OMI-MERIT initiatives ten times over – in just one year! That way we wouldn’t have to wait 20 years for 1 year’s worth of research to get done.
What Can We Do? – Advocate and Crowdfund!
ME/CFS patients of course need to continue advocacy to get NIH and other funding bodies to move ME/CFS up their list of priorities. With NIH, right now things sadly seem to be moving in the wrong direction: Estimated funding for ME/CFS has dropped from $6 million/year to $5 million And as Cort stated in a recent blog, the ME/CFS share of the total NIH budget has in fact been halved, from less than .04% of the NIH’s budget in 1992 to .02% of its budget by 2012
- Unfulfilled Commitments / Broken Promises: The NIH and Chronic Fatigue Syndrome After Twenty Five Years
(Also read Jennifer Spotila’s excellent piece here )
But we can also act on our own, by Crowdfunding ME/CFS research.
Some very successful fundraising efforts are being carried out. The MEandYou Foundation raised large sums of money for the Norwegian multi-site Rituximab trial (now 95% funded) and Invest in ME crowdfunding a UK Rituximab trial is now 81% funded ($474,000). The OMI Crowdfunding B-12/MFTHR trial was successfully funded.
Let’s all try to rally friends and family to donate to biomedical ME/CFS research.
Choose your favourite cause/organization and spread the word. Donations are easily made online (via a credit/pay card or PayPal).
Here are a few tips (all gifts to these organizations are directed towards biomedical ME/CFS research):
Lipkin Microbiome Project
Probably for the first time ever, an eager Dr. Ian Lipkin is turning to crowdfunding to get a study done. Dr. Lipkin’s $1,000,000 Crowdfund effort aims to get at where he very strongly believes ‘the action is’ in ME/CFS – the gut microbiome. If everyone with ME/CFS in the US donated $1 or if 10% contributed $10, the study would be mostly funded. Find out more about the study here and contribute here.
OMI-MERIT/Open Medicine Foundation
Simmaron Research – Redefining ME/CFS
Simmaron recently sponsored 8 immunologists to go to the IACFS/ME conference to produce immune recommendations for the CDC. The only organization given access to the NIH’s biobank of XMRV associated samples, Simmaron has a slew of projects underway, and right now there’s an opportunity to double your donation to Simmaron through a matching donor offer!
ME Research UK (MERUK)
Rituximab Clinical Trials
Another successful Rituximab trial could break this disease wide open. Two initiatives are raising funds for the multi-site Norwegian Rituximab trial by Drs Fluge and Mella:
- MEandYou Foundation (PayPal donations)
- ME-forskning, a Norwegian ME Association initiative (donations through VISA and Mastercard)
The UK Rituximab Clinical Trial - Just 20% to go and this big trial is fully funded!
Help the top ME/CFS exercise physiologists continue their investigations into the core issue in ME/CFS: the post-exertional breakdown.
The ME Association’s Ramsay Research Fund (RRF) is funding research into the post-exertional fatigue present in ME/CFS