Reprinted with the kind permission of Cort Johnson, Health Rising, December 22, 2013
By Cort Johnson
An Institute for All Americans?
"This Budget request represents the Administration’s priorities for guiding the Department of Health and Human Services (HHS) to enhance the health and well-being of all Americans." ~National Institutes of Health
The Department of Health and Human Services 2013 Budget proposal states the NIH is committed to enhancing “the health and well-being of all Americans.”
A committed person is someone who ‘works very hard to do or support something.’ This blog charts the NIH’s commitment to enhancing the health of people with Chronic Fatigue Syndrome over time.
National Institutes of Health (NIH)
The NIH, with its 30 billion dollar budget, is easily the biggest medical research funder in the world. Buoyed by powerful supporters on the Hill, the NIH has had a remarkable ride over the past 20 years, with its budget (not accounting for inflation) tripling over the past 15 years. Funding for the NIH has increased nearly fivefold since it began funding ME/CFS in 1987.
The National Institutes of Health, to put it plainly, has been rather flush. The last twenty years have been a good time to be a medical researcher.
NIH Funding Goes Up / Chronic Fatigue Syndrome Funding Goes Down
As NIH funding levels explode, funding DECLINES for chronic fatigue syndrome (Note the chart below has two scales in order to get the CFS figures on it; NIH funding is in millions of dollars, and the CFS funding is in thousands of dollars.)
From 1987 to 1995 the rate of growth in research funding for CFS equaled or exceeded the rate of growth in of NIH funding. Around 1995, however, something happened: from 1995 to 2002 ME/CFS funding remained flat, which meant that, accounting for inflation, it declined. Ironically, the plateau in ME/CFS funding roughly coincides with an enormous increase in the NIH’s budget that began around 1997.
Chronic Fatigue Syndrome Gets Lost
From 1997 to 2002 the NIH underwent the most rapid budget growth in its history, almost doubling its budget in five years.
One particularly ill-fated move at the end of this period cemented Chronic Fatigue Syndrome’s position as little more than an afterthought at the NIH. The transfer of the CFS research program from the powerful National Institutes of Allergy and Infectious Diseases (NIAID) to the small Office of Research on Women’s Health (ORWH) in the early 2000s [TK1] began a decline in its funding which it has not recovered from. Chronic fatigue syndrome loses ground during as the NIH coffers fill
Not only was the ORWH not given any direct funding for CFS, but the funding mechanism instituted—a consortium of Institutes tasked with funding a disorder they had no direct responsibility for–heralded, as could have been predicted, a dramatic decline in funding.
Over the next five years NIH funding increased twenty percent, while funding for Chronic Fatigue Syndrome funding fell almost fifty percent, hitting its nadir in 2008
In 2009/10 the NIH halted the slide by returning funding (not accounting for inflation) to 2003 levels.
Adjusting for Inflation Reveals Large Drop in Funding Over Time
Adjusting for inflation using the U.S. consumer price index relative to 1987 (the year the NIH program on ME/CFS started) we see that, in real terms, the NIH is currently spending about as much money on ME/CFS as it did back in 1992, only five years after it began funding CFS research.
Similar Pattern in Chronic Fatigue Syndrome Studies
The pattern of studies funded is similar. The number of NIH-funded ME/CFS studies peaked in 2001 and underwent a steep decline as the ORWH fumbled its commitment to this disorder.
The increased number of NIH-funded studies from 1996 to 2001 was almost certainly due to the closure of CFS research centers. Their closure around the year 2000 forced ME/CFS researchers to submit their grants to the Chronic Fatigue Syndrome Special Emphasis Panel which ironically has few, if any, ME/CFS experts on it. Without the insulation of the special CFS research centers, ME/CFS grant approvals fell precipitously.
Without spikes from the Neuroimmune grant in 2006 and several XMRV studies in 2011, the trend in studies would have remained flat. The result is that the NIH is funding about the same number of ME/CFS studies as it did in 1992.
Looking Back at 1992
What was happening in 1992, the last year, adjusted for inflation, in which the NIH was spending similar amounts of money on ME/CFS as it is today?
A similar pattern prevails with chronic fatigue syndrome studies. In 1992 federal estimates suggested Chronic Fatigue Syndrome was a rare disease, and “yuppie flu” was not necessarily considered to be a misnomer. None of the supposed building blocks for ME/CFS (the Fukuda definition, the federal advisory committee (CFSAC), the special review panel for CFS grants called CFS SEP) that were designed to foster further development in this field had occurred.
The field was almost wholly unformed in 1992. Of the 6160 citations PubMed pulled up for a Chronic Fatigue Syndrome search on Dec 8th, 2013, only 500 (about 8%) had been produced by 1992.
In 1992 Manu’s overview of all of 32 studies indicated that most people with ME/CFS were white middle-aged women with abnormal personality traits and high rates of somatoform disorder. Higgins called CFS a Depressive disorder. Simon Wessely was trying to measure fatigue and Bill Reeves published his first paper on CFS.
Epstein-Barr Virus was a hot topic (7 studies). One author asked if CFS was an ‘epidemic’ and another study indicated CFS was ‘rare’ (only 1 of 13,538 people examined had it).
The following year the CDC estimated that from 2-7 people per 100,000 have Chronic Fatigue Syndrome. ME/CFS was considered a rare disease.
Flash Forward Twenty Years
It wasn’t until Jason’s 1999 paper indicated approximately 800,000 Americans had Chronic Fatigue Syndrome that researchers began to be aware of its impact. A CDC prevalence paper in 2003 concluded CFS was “a major public health problem”. A 2004 CDC paper indicated that productivity losses caused by CFS ran to the tune of 9.1 billion dollars a year. A 2008 Jason paper estimated both direct and indirect costs to the U.S. from ME/CFS at about 20 billion dollars.
It appears that none of this made any difference to the NIH. Studies demonstrating dramatically increased incidence of a disorder should, one would think, attract more resources, but that was not to be. In the most real terms of all, money spent, Chronic Fatigue Syndrome remains the same, small, poorly funded illness it was in 1992. It might as well still be the “yuppie flu” many considered it to be in 1992.
The NIH has funded one grant package (Request for Applications) for Chronic Fatigue Syndrome in the last 20 years.
A Commitment to What?
The NIH’s ‘commitment’ to ‘enhancing the health’ of people with Chronic Fatigue Syndrome has declined dramatically over time.
Funding for Chronic Fatigue Syndrome made up less than .04% of the NIH’s budget in 1992. By 2012 the NIH was devoting less than half of that, or less than .02% of its budget, to ME/CFS. If Chronic Fatigue Syndrome had just maintained its meager share of the NIH’s budget from 1992, the NIH would be spending 10-12 million dollars annually on this disorder today.
The NIH was providing about $400 in funding per patient in 1993. It’s now providing about $6 a patient. (If the NIH currently provided the same funding per patient in 2013 as it did in 1993, the ME/CFS research budget would be around $400,000,000).
NIH Does Not Consider Need in Its Funding Decisions
One might think that ‘need’ should play a role in the funding decisions of an agency tasked with enhancing the health of Americans, and at times it may… but not with Chronic Fatigue Syndrome.
Total NIH and Chronic Fatigue Syndrome Funding by Graham McPhee
In 1993, when the NIH was spending 6 million dollars on ME/CFS, the CDC estimated that out of every 100,000 people somewhere between two and seven people had Chronic Fatigue Syndrome. Studies now indicate ME/CFS affects about 60 times as many people as was believed in 1993. (That would be one of every 300 people in the US.)
The 985,000 more people believed to have ME/CFS now than in 1993 (estimated to be only 15,000 then) might as well not exist. The NIH is still providing funding commensurate with the 15,000 person disorder ME/CFS was thought to be in 1993.
The NIH is not committed. Over the past twenty years it has not worked very hard, or even hard at all, to enhance the health of people with Chronic Fatigue Syndrome. One could argue that the NIH has barely made an effort at all at doing that.
Dramatically increased estimates of prevalence, studies showing high economic costs to ME/CFS patients and their families, costs to the nation, and 20 years of research have moved the NIH not at all.
That leaves us with the question how the NIH could be so oblivious, so uncaring or just so uninterested in so many people that need its help? Why the NIH has remained so stubbornly unwilling to assist people with ME/CFS is unclear.
What beliefs or structural impediments are stopping the NIH from making good on its stated commitment to help people with Chronic Fatigue Syndrome? Why has it been unwilling to provide even small increases in funding over time? How could the budget for ME/CFS could decline as the NIH’s budget doubled?
What is happening here? How could such a rich, vital organization turn its back on so many? It is a question that haunts many people with ME/CFS. All they did, after all, was become sick with the wrong disorder.
These are questions that vitally need answers. Until we know the answers to them, it’s unlikely we’ll see changes.
The NIH has twenty years of ignoring the health needs of a significant part of the population to answer for.
Some progress was made recently. The fact that a million dollars was allocated to produce a clinical definition of ME/CFS suggests the NIH may be starting to unclench its tight hold on its purse. With the FDA taking up Chronic Fatigue Syndrome as well as the numerous advocacy efforts over the past couple of years, the NIH may be getting enough pressure to improve its commitment to ME/CFS.
Compared to the needs present (demonstrated by NIH and CDC funded studies, by they way) this is a baby step, however.
My guess is that the NIH doesn’t respond to need at all. My guess is that the NIH is filled with bureaucrats who don’t want to make a mistake and want to look good to their peers. They’re interested in what’s hot, what they believe will work and aren’t willing to expend their money or influence on what’s not hot or on what carries more uncertainty. They probably know very little about chronic fatigue syndrome. In other words, it’s all about looking good.
I also believe the current funding mechanism which requires that Institutes with no direct responsibility for ME/CFS fund it, was a horrendous mistake and chronic fatigue syndrome will never get sufficient funding as long as that’s in place.
At some point, someone or some group of people in the power at the NIH may decide that people with chronic fatigue syndrome community are worth it and that need does count for something in their funding decisions. They may take a stand that the NIH is committed to improving the health of everybody under its watch, not just the disorders it wants to study, but everyone – no matter how difficult or confusing or poorly named a disorder it is.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.