New paper provides initial estimate of ME/CFS DALY (disability adjusted life years) and compares that to NIH's analysis of DALY versus NIH spending for 69 categories of spending. The DALY is the World Health Organization's measure of disease burden.
Estimating the disease burden of ME/CFS in the United States and its relation to research funding
J Med Therap December 2016. DOI: 10.15761/JMT.1000102 Dimmock ME, Mirin AA, Jason LA.
https://www.researchgate.net/public...d_States_and_its_relation_to_research_funding
The full text is available online. The journal only provides links for Pubmed articles. The full reference list with links can be found here
Abstract:
At the National Institutes of Health (NIH), burden of disease is an important factor in funding decisions along with such factors as scientific opportunity, the quality of the science, and the interest of researchers. Recent studies have quantified the burden for a number of diseases in the United States and the NIH has used that information to analyze how its own funding patterns correspond to disease burden. However, the burden of disease has not been quantified for myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS) and is often underestimated due to a lack of research and the misperceptions about the nature of the disease.
Using the limited information in the literature, this paper develops a preliminary estimate of the disease burden of ME/CFS in the United States, using the World Health Organization’s Disability Adjusted Life Years (DALY) measure. The ME/CFS DALY estimate is then compared to the NIH’s 2013 analysis of research funding versus DALY across other funded diseases in order to estimate a level of funding for ME/CFS that would be commensurate with disease burden.
Even given the limitations arising from sparse data, this analysis demonstrates that federal research funding for this disease is far less than what would be expected by the burden of the disease. We conclude that the annual research funding for ME/CFS would need to increase twenty-five fold or more to be commensurate with disease burden. This level of funding would best leverage the growing interest of researchers and the significant scientific opportunities that exist to understand the pathology of this disease and to advance diagnostics and treatments.
Estimating the disease burden of ME/CFS in the United States and its relation to research funding
J Med Therap December 2016. DOI: 10.15761/JMT.1000102 Dimmock ME, Mirin AA, Jason LA.
https://www.researchgate.net/public...d_States_and_its_relation_to_research_funding
The full text is available online. The journal only provides links for Pubmed articles. The full reference list with links can be found here
Abstract:
At the National Institutes of Health (NIH), burden of disease is an important factor in funding decisions along with such factors as scientific opportunity, the quality of the science, and the interest of researchers. Recent studies have quantified the burden for a number of diseases in the United States and the NIH has used that information to analyze how its own funding patterns correspond to disease burden. However, the burden of disease has not been quantified for myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS) and is often underestimated due to a lack of research and the misperceptions about the nature of the disease.
Using the limited information in the literature, this paper develops a preliminary estimate of the disease burden of ME/CFS in the United States, using the World Health Organization’s Disability Adjusted Life Years (DALY) measure. The ME/CFS DALY estimate is then compared to the NIH’s 2013 analysis of research funding versus DALY across other funded diseases in order to estimate a level of funding for ME/CFS that would be commensurate with disease burden.
Even given the limitations arising from sparse data, this analysis demonstrates that federal research funding for this disease is far less than what would be expected by the burden of the disease. We conclude that the annual research funding for ME/CFS would need to increase twenty-five fold or more to be commensurate with disease burden. This level of funding would best leverage the growing interest of researchers and the significant scientific opportunities that exist to understand the pathology of this disease and to advance diagnostics and treatments.
