Estimating the disease burden (DALY) of ME/CFS in the United States

medfeb

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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.
 

alex3619

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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.
Well, duhhh. Its way overdue too, we as patients have been writing about DALYs for a long time now. The problem with DALYs though is they use a fudge factor if I can recall it correctly, though obviously not called that. I will see what they did in the paper, but I suspect they rate CFS much lower than it should be, and so the disease burden is under-reported even using DALY. That used to be the case, and I hope its changed, but this is worth keeping in mind.
 

alex3619

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All of my concerns appear addressed by this paper. Nice. Komaroff first asked for funding for some decent epidemiology in the 80s. We are still waiting. I have been intuitively using a ballpark figure of 20x for the increase in funding needed, and this is close to the x25 in the paper, making it also intuitively about what I would expect. I hope this sparks a debate and a decent epidemiological study follows. I can certainly see myself using this in advocacy.
 

Denise

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Thank you very much to the authors!
Even those these are best estimates, it's far more than we had before!
I agree that this is very useful!

The article is also available here.

EDIT - pdf here
 
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Gemini

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JaimeS

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It's a good paper. Even acknowledging the limitations (which they do), funding for ME should be over 25 times higher than it is now in order to be commensurate with their calculated disease burden. Even presuming they're off by a lot (which I doubt) the government should still be spending a great deal more money on ME research than they are now. As if we needed further confirmation.

The researchers' observations at the start that illnesses that are considered in some way to be the patients' fault -- like COPD -- are less well-funded was sharp enough that it should sting.

-J
 

Forbin

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I feel like 25x doesn't quite capture it.


Hey, NIH, we need an increase of 2,585.71%.

By the way, that totals out at $188,000,000 per year.

Just wanted to give you a heads up. Places you might consider finding the money would include the budget for visiting historians. Thanks.
 

Dolphin

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Well done to the authors. It will be very valuable for advocacy.

I like that they list a lot of limitations and also do some sensitivity analyses.

I remain to be convinced that the Years Lost due to Death is as big as it is given. But it contributes less than one third of the total DALY figure.
 
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This study has been updated in 2020 to accomodate updated information:

Research update: The relation between ME/CFS disease burden and research funding in the USA
Authors: Mirin, Arthur | Dimmock, Mary | Jason, Leonard
https://content.iospress.com/articles/work/wor203173

Excerpt:
Mirin et al 2020 said:
BACKGROUND:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic, multisystem disease that affects an estimated 1 to 2.5 million Americans. It has no widely accepted biomarkers and no FDA-approved treatment. ME/CFS has traditionally been one of the lowest funded diseases by the United States National Institutes of Health (NIH).

OBJECTIVES:
We provide here an update to our 2016 article, which estimated the disease burden of ME/CFS in the United States in 2013 and its relation to NIH’s 2015 analysis of research funding and disease burden. This update incorporates more recent burden data from 2015 and funding data from 2017.

METHODS:
We perform a regression analysis on funding versus disease burden to determine 2017 funding levels that would be commensurate with burden. Burden figures for 2017 are estimated using population-based extrapolations of earlier data.

RESULTS:
We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH’s analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.

CONCLUSIONS:
To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.