Behind the Numbers of the #MEAction Funding Equality Petition

Why $250,000,000 in research funding?

The #MEAction flagship Funding Equality Petition is called “Tell Congress to Support Funding Equality for ME” because we’re asking the United States Congress increase NIH Research funding for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) to $250 million per year. Most patients, doctors, and researchers in the ME/CFS community agree that we need more funding. Every dollar counts, but we had to choose a number. How did we at #MEAction decide to ask Congress for $250 million? Let’s go behind the numbers.
Similar diseases get more money, way more money. To illustrate this fact, let’s compare the NIH funding for ME and Lupus. Both are complicated chronic illnesses without well understood causes and both impact the lives of many Americans.
ME affects roughly three times as many people in the United States, 1 million people have ME and about 300,000 have Lupus. According to researchers, ME costs a patient an average of $24,000 per year and Lupus costs a patient about $21,000 per year. What are these extra costs? The numbers come from large research surveys that look at how much patients spend on direct costs like medical care and treatments and also factor in the economic impacts of disability including lost wages.
Patients with ME on average are spending less on treatments but their illness costs them more. How does that work? Patients with ME are losing a lot of potential income due to how much they are impacted by disability, enough to make up for the fact that the average Lupus patient pays about 50% in direct costs of treatments and medical expenses.
Quick multiplication shows that ME costs the United States 4 times as much as Lupus. ME costs patients and society about $24 billion per year. Lupus costs the United States about $6 million per year. In no way should this be considered an attempt to minimize the devastating impacts of Lupus, rather this illustrates the lack of funding equality between the two diseases.
In 2014, Lupus received $99 million in research funding from the NIH. During that same year, ME research received only $5 million. There are no errors with the decimal place, Lupus received about 20 times more funding than Myalgic Encephalomyelitis did.
So if Lupus is not even getting $100 Million, why should ME get $250? Let’s look at the numbers per-capita to understand more. Per person, the NIH devotes about $330 per year to each patient with Lupus. For each ME patient, they currently allocate just $5 per year. By raising the total NIH research funding for ME/CFS to $250,000,000 the NIH will be providing $250 per person per year, still less than they are spending on each patient with Lupus. The total ask of $250 million per year in research funding is completely reasonable given what other disease get. Based on how many ME patients there are currently in the United States, it is also sorely needed.
Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) impacts roughly 1 million patients in the United States and costs each one of them an average of $24,000 per year. With the Funding Equality Petition we’re asking that Congress increase the research budget from $5 per patient per year, to $250 per patient per year. This number is justified given the economic burden to individual patients and to society as a whole, especially when compared with other similar diseases.

Tell Congress why you support funding ME/CFS at a level equivalent to that of other chronic diseases.


3 thoughts on “Behind the Numbers of the #MEAction Funding Equality Petition”

  1. Clicking on the “Sign Petition” button gives me a message about the connection being untrusted. While I can ignore this, I have found in the past that this wasn’t a good idea and has been the cause of several computer viruses. While I would very much like to sign this petition, I would also very much like it if you would go a step further and fix the site so it is “trusted”. Thank you.

    1. Hi Eric, thanks so much for letting us know so that we could correct the error! The link is now fixed (there was no virus, just a typo that was being flagged). Keep us posted if you find any other problems or have questions!

Comments are closed.

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