SMCI’s interview/presentation featuring Dr. Klimas provides a call to arms for fundraising advocates. NIH's funding inequity is highlighted in Jørgen Jelstad’s “The chronic lack of funds for ME/CFS research:"
An NIH update with dollars in millions for the years 2013 to 2018 estimates low 2018 funding: MS--$77m; Arthritis--$193m ; Lupus--$76m; ME/CFS--$6m. Meanwhile, Dr. Klimas tells us:For 25 years ME/CFS has been near the bottom of the list when it comes to funding for research. Perhaps Klimas refers to an exceptionally meagre year when she mentions the sum of $3 million, but in the larger perspective it is all the same. Over time the level of funding for ME/CFS research is deplorable.
The following graph shows NIH funding for ME/CFS research compared to three comparable diseases, MS, arthritis and lupus:
These numbers say it all. NIH spends around $115 million on MS research every year. For ME/CFS, the number is $5 million. (Source: NIH Categorical Spending).
One single year of MS research equals about 23 years of ME/CFS research. That is just about all ME/CFS research ever done.
The same comparison with arthritis shows that one year of arthritis research translates into 50 years of ME/CFS research. And one year of NIH spending on HIV/AIDS is the equivalent of about 600 years’ worth of ME/CFS grants.
“Eight years ago...but there’s no place to go.” Our advocates claim that, based on disease burden, NIH funding for ME/CFS research should be equivalent to $188 per patient per year:"About eight years ago, I had my first systems-biology data in ME/CFS. I was ready to start doing this modeling then. And you know, we’ve done a lot of work; it’s not that we’ve been idle. But we’ve done it, you know, smoke and mirrors and relatively small funds. But we are...in the ME/CFS world, we have the models. We know what to do. We are ready for human clinical trial. I should have been there, first. But there’s no place to go. It was so frustrating.... I dare say that this Gulf War trial that we’re just launching right now will be done in about a year” (2:00-2:30; 4:50-4:55).
Why is funding so low?
Funding for ME/CFS is arguably the lowest per patient for any major disease in the United States, averaging to about $5 per patient per year. Compare this to multiple sclerosis, an illness with many similarities to ME, but which receives over $200 per patient per year.
A 25-fold NIH funding increase is calculated by projecting an estimated ME/CFS Disability Adjusted Life Year (DALY) onto 2013 NIH data and using a modest prevalence estimate. It provides no compensation for past malfeasance.How much should ME/CFS receive in funding per year?
While it may seem abhorrent in one way to quantify and compare suffering, it’s a necessity to determine whether or not the amount of funding allocated to ME/CFS research, treatment, and oversight is fair and reasonable.
The final DALY for ME patients was 0.714M or 714,000. In comparison to other illnesses, this projects that the funding for ME research should be equivalent to $188,000,000/year, or $188 per patient per year. That would be more than 25 times the funding allocated for research in the last calendar year in the US.
Burden of disease is an important factor in NIH funding decisions, along with such factors as scientific opportunity, the quality of the science and the interest of researchers. But in the final analysis, a Washington Post article reports, less NIH funding may be provided to diseases “where we blame the victim” or there is less public support.