Research update: The relation between ME/CFS disease burden and research funding in the USA

Mirin, A.A.; Dimmock, Mary E.; Jason, Leonard A.

doi:10.3233/wor-203173

Cited by 30 publications

(33 citation statements)

References 13 publications

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“…Listed with each disease is the ratio of actual funding to that commensurate with disease burden for years 2015, 2017, and 2019 (based on the regression curve for the corresponding year). Also included 4 Reprinted with permission from IOS Press.) are 2015 burden in DALY (millions) and 2019 funding (millions of dollars, obtained from RCDC funding source).…”

Section: Funding Versus Gender Prevalencementioning

confidence: 99%

Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health

Mirin

2021

Journal of Women's Health

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153

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Background: Gender bias has been an ongoing issue in health care, examples being underrepresentation of women in health studies, trivialization of women's physical complaints, and discrimination in the awarding of research grants. We examine here a different issue-gender disparity when it comes to the allocation of research funding among diseases. Materials and Methods: We perform an analysis of funding by the U.S. National Institutes of Health (NIH) to ascertain possible gender disparity in its allocation of funds across diseases. We normalize funding level to disease burden, as measured by the Disability Adjusted Life Year, and we specifically consider diseases for which both disease burden and funding level are provided. We apply a power-law regression analysis to model funding commensurate with disease burden. Results: We find that in nearly three-quarters of the cases where a disease afflicts primarily one gender, the funding pattern favors males, in that either the disease affects more women and is underfunded (with respect to burden), or the disease affects more men and is overfunded. Moreover, the disparity between actual funding and that which is commensurate with burden is nearly twice as large for diseases that favor males versus those that favor females. A chi-square test yields a p-value of 0.015, suggesting that our conclusions are representative of the full NIH disease portfolio. Conclusions: NIH applies a disproportionate share of its resources to diseases that affect primarily men, at the expense of those that affect primarily women.

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Section: Funding Versus Gender Prevalencementioning

confidence: 99%

Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health

Mirin

2021

Journal of Women's Health

Self Cite

153

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“…However, in terms of undertaking such research, it is important to note that the relatively small amount of existing research on ME/CFS is in part a result of the lack of funding available in this field/area. For example, it has been shown that ME/CFS is more underfunded with respect to burden than any other disease in the US, with the illness receiving roughly 7% of that commensurate with disease burden 51 . To date, there has been very limited research on ME/ CFS in Ireland and this is something that should be urgently addressed.…”

Section: Resultsmentioning

confidence: 99%

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study

et al. 2020

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Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity, and progression are extremely variable. Despite being relatively common, the condition is poorly understood and routine diagnostic tests and biomarkers are unavailable. There is no evidence on the economic impact of ME/CFS in Ireland. Methods: Adopting a patient and public involvement approach, we undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland, including how and why they arise. Focus groups were audio-recorded and transcribed verbatim, and we employed thematic analysis following the approach set out in Braun and Clarke (2006). Results: Themes from the data were: (1) Healthcare barriers and costs; (2) Socioeconomic costs; (3) Costs of disability; and, (4) Carer-related costs. Patient participants described a range of barriers to effective healthcare that led to extra costs, including delays getting a diagnosis, poor awareness/understanding of the condition by healthcare professionals, and a lack of effective treatments. These were linked to poor prognosis of the illness by participants who, as a result, faced a range of indirect costs, including poorer labour market and education outcomes, and lower economic well-being. Direct extra costs of disability were also described, often due to difficulties accessing appropriate services and supports. Informal carer participants described a range of impacts, including time costs, burnout, and impacts on work and study. Conclusions: The data suggests that ME/CFS patients face a wide range of costs, while there are also wider societal costs in the form of costs to the health service, lost productivity, and impacts on informal carers. These results will inform ongoing research that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness amongst healthcare providers and policymakers.

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“…These deficiencies are directly related to the extremely low level of research funding for ME/CFS in the US [29] and worldwide [30]. In the US, ME/CFS research is underfunded by about a factor of 14 relative to its burden of disease [31,32]. One reason for this may be that pwME are predominantly female, and, as recently demonstrated in Mirin (2020) [33], female-dominated diseases tend to be underfunded relative to male-dominated diseases.…”

Section: Discussionmentioning

confidence: 99%

Three Cases of Severe ME/CFS in Adults

Williams¹,

Isaacson-Barash²

2021

Healthcare

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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming fatigue, post-exertional malaise, sleep disruptions, gastrointestinal issues, headaches, orthostatic intolerance, cognitive impairment, etc. ME/CFS is a physiological disease with an onset often triggered by a viral or bacterial infection, and sometimes by toxins. Some patients have a mild case and are able to function nearly on a par with healthy individuals, while others are moderately ill and still others are severely, or even, very severely ill. The cohort of moderately to very severely ill is often housebound or bedbound, has lost employment or career, and has engaged in a long, and often futile, search for treatment and relief. Here, we present three case studies, one each of a moderately ill, a severely ill, and a very severely ill person, to demonstrate the complexity of the disease, the suffering of these patients, and what health care providers can do to help.

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Research update: The relation between ME/CFS disease burden and research funding in the USA

Cited by 30 publications

References 13 publications

Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health

Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study

Three Cases of Severe ME/CFS in Adults

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