The 20 Years Ago Today Series V: Still the ‘Yuppie Flu’

May 16, 2012

Posted by Cort Johnson

An Institute for all Americans….

Or Just Some?

The Department of Health and Human Services 2013 Budget proposal doesn’t mince words about whose health the Department, which oversees the NIH and CDC, is charged with protecting….

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.

But has  it? Government funded studies have been invaluable in documenting that the million people or so people with chronic fatigue syndrome in the U.S. have high rates of disability and cost the economy about $20 billion a year.Those are  major disease type figures but  has the DHHS listened to its own figures?

In Part V of our “20 Years Ago Today Series” celebrating the 20th Anniversary of International Awareness day, we take a in-depth look at trends in CFS funding at the biggest researcher funder in the world, the NIH and get some surprising results.

There’s no doubt that, at least in the U.S., ME/CFS has gotten a better reception  over time. It’s not the ‘yuppie flu’ of yore and while many negative attitudes persist, at least in the media and on major websites,  the disorder is addressed in a respectful manner. But has movement, slow but considerable, translated into more funding?  Let’s take a look at CFS and NIH funding trends  since the CFS program was initiated in 1987. Take a deep breath….its not pretty.

National Institutes of Health (NIH)

The NIH, with its 30 billion dollar budget, most of which  goes directly  to research grants, 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.

NIH funding (not adjusted for inflation) has increased 6-fold since 1987, the year the NIH began funding CFS research

The National Institutes of Health has been to put it plainly…rather flush…The past 20 years have not been a bad time to be a medical researcher…that is unless you’re studying ME/CFS.

In the graph below contrasting total CFS funding with total NIH funding note that  since 1995 funding for CFS declined as the NIH funding more than doubled. Judging from this chart most disorders much have experienced substantial funding increases over time  (Pleases note the charts below are distorted in order to get the CFS figures on them; NIH funding is in millions of dollars, the CFS funding is in thousands of dollars )

As the NIH budget skyrockets in the mid-1990's funding for CFS declines

 

Notice that from 1987 to 1995 the rate of  growth in research funding for CFS actually exceeded the rate of growth in of NIH funding, suggesting high interest in this disorder. Around 1995, however, something happened; from 1995 to 2002, although the NIH budget increased signficantly,  ME/CFS funding remained flat, which meant that accounting for inflation, it declined.

Window of Opportunity Lost For ME/CFS

Those years were just a taste of what was to come, though. From 1997 to 2002 the NIH underwent the most rapid budget growth in its history, almost doubling it’s budget  in  five years. The graph below, charting NIH and CFS funding during this period, indicates CFS funding remains flat, and thus in real terms, continues to decline.

During the greatest budgetary growth period in the NIH's history CFS funding remains flat, and in real terms declines

Perhaps most importantly chronic fatigue syndrome researchers lose ground during a major window of opportunity.  When that window closes researchers of other disorders have built the infrastructure for future success, ME/CFS  researchers have not…. Chronic fatigue syndrome occupies a smaller share of the pie than ever and continues to decline in importance.

NIH Shift Produces Disastrous Results for CFS

Some of it must have been due to research leads that didn’t pan out. But one particularly ill-fated move must have played a major role. The transfer of the CFS research program from the powerful  National Institutes of Allergy and Infectious Disorders (NIAID) to the small  Office of Research for Women’s Health (ORWH) in the early 2,000′s and the subsequent closing  of the four NIH funded  CFS research centers directly.

Not only was the ORWH not given any direct funding for CFS but the funding mechanism it instituted…a consortium of Institutes determining whether to fund a disorder they had  no direct responsibility for, was, as could have been predicted, to be a recipe for poor funding. Plus no longer did the ME/CFS researcher center directors have control over funding. Now, all research grants were dependent on passing muster at the CFS SEP panel, which rarely had CFS experts.

The closing of the research centers, two of which were lead by Dr. Klimas and Dr. Natelson, had repercussions that still reverberate today.

Hitting Bottom

Over the next five years NIH funds creeps up slowly while chronic fatigue syndrome funding falls almost fifty percent hitting its nadir in 2008.

With the research centers closed, a hostile grant review panel and a crippled funding structure, research funding declines by almost 50% in five years

In 2009/10 the NIH halts the slide returning funding (not accounting for inflation) to 2003 levels.

Inflation Takes a Huge Bite

Unfortunately inflation is a factor – a big factor – that must be accounted for.   Taking inflation into account reveals the startling fact that, in real terms, that in 2010 NIH is spending about as much money on ME/CFS as it did in 1993, 17 years earlier and only five years after it began funding CFS research. (The chart below is in thousands of dollars.)

Accounting for inflation NIH funding for CFS in 2010 is at early 1990's levels

In 1993 federal estimates suggested chronic fatigue syndrome was a rather rare disease but that idea is long gone.  Jason’s 1999 paper indicated it affected around 800,000  Americans.  A CDC 2003 prevalence paper 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.

Still the ‘Yuppie Flu’

None of those startling figures have made the slightest impact on the NIH’s  approach towards ME/CFS. With regards to funding,  ME/CFS  remains the same, small, controversial, disorder the NIH thought it was in 1993. None of the other findings… the low blood volume, reduced blood flows, natural killer cell abnormalities, exercise intolerance studies, genetic,  etc. ,etc. have made the slightest difference in the NIH’s commitment to fight ME/CFS…Regarding the most significant factor in medical research – actual money spent on the disease – CFS  might was well still be the Yuppie flu…

The trend in funding, of course, mirrors the trend in the number of ME/CFS studies the NIH as funded…

NIH funded CFS studies mirror the drop in research funding...

Without several XMRV studies the trend  in 2011 would have remained flat;  remarkably the NIH is funding about the same number of ME/CFS studies as it did in 1991….and that number is probably going to fall further as a significant number of grants are ending this year. A grant package should have been associated with the State of the Knowledge Conference  but none was forthcoming.

Neglect – The governments own studies show ME/CFS is a significant disorder but it might as well be the ‘Yuppie flu’ for all the attention given to it. Something continues to be very wrong at the NIH (and CDC). Until something knocks whatever mindset at the NIH prevents  figures there from viewing CFS as a workable, significant disorder; ie as  an opportunity for research….funding for this disorder will, most likely continue on in its very petty pace.

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19 comments

{ 18 comments… read them below or add one }

Sarah Robinson May 17, 2012 at 8:30 am

Oh, Cort, how do you do it? How do you have enough mind to track all of this and make such a cogent argument for us? I’m so appreciative. Thank you. Thank you so much.

Sarah

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Cort May 17, 2012 at 11:50 am

Thanks Sarah,,,I’ve been thinking about the NIH problem for years..(and I’m in better shape than most :) )

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Sasha May 17, 2012 at 11:33 am

Hi Cort – just looking at the graph tracking NIH CFS funding and total NIH funding for 2003 to 2008 – what’s up with the y-axis? It looks like CFS funding was $5,000 a year and was about a fifth of the NIH total funding budget??? I thought NIH’s CFS funding was less than 1% of its total budget – and should that axis be millions, not thousands?

Sorry to nitpick at your interesting article – amazed how much interesting stuff you’ve managed to put up in the last few days!

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Cort May 17, 2012 at 11:54 am

Yes, in order to squeeze the CFS figures in there, the NIH figures are in millions and the CFS figures are in thousands…I rejiggered it to make that clear…thanks for pointing that out…

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Anne Ö May 18, 2012 at 4:44 am

Thanks for a great post, Cort. Very illuminating.

The question in my head: What can we patients do to make the NIH change its ways in this field?

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Cort May 19, 2012 at 4:01 am

Thanks Anne, I think we have to protest loudly and consistently and target the politicians who can force change in these areas…Support organizations like the CAA, CFI, Simarron, Mt Sinai ME/CFS Center that are doing innovative research is very important as well since new findings can spark more funding (as we saw with XMRV). The main thing, I think, though is get after the people who hold the purse strings at the NIH..

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HowToEscape? May 18, 2012 at 7:35 pm

Cort – I have a suggestion which you’ve no doubt considered before

Could you repost the charts, with the un-adjusted, same-scale chart appearing first and the adjusted (1000x magnification for the CFID scale) below and in a smaller total size?

Why, you might ask. Simple …
Pictures > words. To us with the disease, words process less well but we get the point. To people who who think we’re basically a bunch of annoying cranks (98% of the population) they will see the pic but not internalize the one thousand to one adjustment of the CFID scale.

So I’d suggest posting a large graphic with total NIH budget, a couple few rare but better funded diseases, “cancer” (actually itself a bunch of disease…) and CFID on the same scale. Yep, we’ll be a nearly flat line indistinguishable from zero until magnified. *That’s the point*

Then under that, show a magnifying glass, a look here graphic (like what’s used when magnifying a map section) and CFID funding _only_ at a visible scale. If you want to get both on one graph, have a horizontal tear mark, with the graph restarted above the break. Don’t place us on a distorted scale with the NIH total in any one graph. Placing us in thousands and the total in millions on the same graph sends a strong visual cue which blankets the statements given in words. Images are processed separately and more directly from words, and rest with a greater impression.

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Cort May 19, 2012 at 4:06 am

Ha…hadn’t thought of that…yes, putting them on the same scale ends up with CFS being a straight line at the bottom of the scale – yes just about indistinguishable from zero…this is not the end of these graphs or this message by the way….let’s talk :)

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HowToEscape? May 19, 2012 at 8:13 pm

OK — em me directly if I can be helpful — :-)

oceanblue May 21, 2012 at 2:01 pm

Great bit of analysis, Cort, and the use of graphs make it easy to follow too. Thanks

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Esther12 May 23, 2012 at 5:26 pm

Yeah – thanks a lot for the graphs. They do make things clear.

Around 1995 was when the psychosocial approach came to prominence, with their concerns about legitimising illness beliefs and so on – it wouldn’t be at all surprising if that explains much of the drop off.

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Cindy Downey May 25, 2012 at 1:07 pm

Hello,
Thank you for this informative, although frustrating and depressing article.
I am writing from my perspective in Canada, where, according to the Canadian Community Health Survey data collected by Statistics Canada (a Federal Government department), in 2010 there were 756,000 Canadians with ME/CFS and/or Fibromyalgia. This survey noted that Canadians with ME/CFS and/or FM were among the top 5 disabilities with the highest unmet health care needs. The ME/FM Action Network in Canada advises that “there are serious health and social issuers affecting Canadians with CFS and FM that need to be addressed.” They go on to say that what others take for granted, we must work for through education, and awareness mechanisms. I do not have the exact figures for government funding for ME/CFS research in Canada, but I do know they are quite low. With the Norwegian Rituximab studies in mind, it is astounding that our Canadian government is ignoring 3/4 of a million people who have a possible auto-immune disease! Despite there being a plethora of scientific proof regarding the physiological nature of these very devastating and disabling conditions, our various governments see fit to ignore this health and social crisis. I think people with ME/CFS and/or FM should find out which politicians will put forward plans for more ME/CFS/FM funding, and vote for those people who will represent their cause. Thank you for this opportunity to voice my opinion.

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Cort May 25, 2012 at 4:52 pm

It’s kind of long boggled the mind how the federal government can so blithely go on their business and so blithely ignore so many people. This “This survey noted that Canadians with ME/CFS and/or FM were among the top 5 disabilities with the highest unmet health care needs.’ is an amazing finding. My guess is that researchers are simply not as interested in these common but complex diseases and its researcher interest – not need- that drives federal funding for disorders…

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Thomas M. Hennessy, jr. May 25, 2012 at 3:44 pm

Dear Cort,
THANKS for all your efforts over the years. just a couple of comments from the guy who started May 12th as an INTERNATIONAL AWARENESS DAY FOR PEOPLE WHO SUFFER FROM WHAT I REFER TO AS “CIND” disorders. That is CHRONIC immunological and NEUROLOGICAL Disorders. Being that my late, great Father was the chief lobbyist for Getty Oil in D.C for 17 years, i do many things the way he taught me. First, spread the credit around. We had only 12 of us in the first 1992 “MAY 12th”. and we managed to get a two hour videotape chock full of pertinent information to more than 65 influential people on this planet. Because we OPENLY Carbon copied every person on the list, we got more than 35 responses, 17 thoughtful replies and 4 TV shows or Series! Now, 20 years later, i see minimal if any Dateline NBC, 48 HOURS, PBS specials, Piers MORGAN TONIGHT (we got TWO CNN Larry King LIVE shows back in the day). My father used to say, “He who names it, FRAMES the debate!”. We were DOOMED as soon as the late human herpes sore, Stevie Ray Strauss railroaded “CFS” down our throats instead of ” chronic epstein Barr virus” which it had been called for close to a decade. Ms. Gidget Faubion from Portland, Oregon, had built up a nationwide network of close to 400 support groups from 5 to 500 members! They were very sick, just like US, most had HIGH EBV or other viral titres, and they got SOME support, but it was still labeled as a “Yuppie FLU”. So, i think the REAL look back date should be the MARCH 1988, Annals of INTERNAL Medicine, article championed by Strauss et all. Gary Holmes, who gave his name to this bastardized, hybrid, NON=definition, was never seen or heard from again!!! i don’t have the time, energy or desire to rehash the past 25 years, but, Dr. William Reeves, who you cited as late coming to the party was asked UNDER OATH in a top secret Congressional hearing in late 1996, when there were some 80,000 VERY sick gulf war veterans if “GWS” and “CFS” are similar? (the question was planted by a RESCIND, INC. member to a sympathetic Congressman’s top staffer on this subject). Reeves paused, Looked back over each shoulder to see if he could find someone who might “rat him out”. and he turned back and said, “Well, Sir, ONE group was correct early and often. A Mr. Hennessy and his group were claiming that GWS and CFS were “overlapping conditions” for years. I am here today to state that GWS and CFS are not just similar, but virtually identical!”….i would like to see if sick gulf war vets and NEUROLOGICALLY impaired Myalgic Encephalomyelitis patients REALLY can recover and climb out of their sick beds with the PITTANCE and crumbs thrown our way over the past 25 years! If you believe ONE word of the BULLSHIT that has oozed out of the NIH, CDC and HHS in D.C. over the past 25 years. then re=elect our famous COKEHEAD, alcoholic “W” president again and put Karl Rove and Tricky DIck CHENEY back in charge. i have written documentation that they referred to us as “political Problems” for republicans now and in the future!”…..Have a nice Day!~…….www.rescindinc.org. and http://www.May12.org xo TMH

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Cort May 26, 2012 at 5:22 am

Thanks Tom, the first half of that post it showed why you were so effective…I don’t think there are too many Tom Hennessy’s around any more and we certainly don’t get the media coverage although ironically we are better protrayed in the media…..and we have much better studies and many more positive studies and funding is worse than ever – go figure….

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taniaaust1 May 25, 2012 at 9:38 pm

Great article which actually shows what Ive known for years. Things are not getting any better for ME/CFS.

” My guess is that researchers are simply not as interested in these common but complex diseases and its researcher interest – not need- that drives federal funding for disorders…’

Many ME/CFS researchers in the past tried to get grants but the funding (possibly 90%+ of it) was all going to the psych field CFS researchers and the other researchers then didnt have much hope of getting the grants they applied for.. hence over time researchers gave up knowing they had no change of getting funding.

It wasnt that researchers were not interested in our illness but rather they just couldnt go into areas where no money is.

“Around 1995 was when the psychosocial approach came to prominence, with their concerns about legitimising illness beliefs and so on – it wouldn’t be at all surprising if that explains much of the drop off.’

“Support organizations like the CAA, CFI, Simarron, Mt Sinai ME/CFS Center that are doing innovative research is very important as well since new findings can spark more funding (as we saw with XMRV).”

The thing which was different with XMRV is that people out there got worried about it due to the possibly of transmission, if it wasnt a viral new finding which had been found, I’ll sure it would of been basically ignored like so much other new ME/CFS findings have been over the years and still get ignored.

There are so many ME/CFS findings out there which havent been properly followed up to this day. It isnt a lack of findings which is holding back ME/CFS research.

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Cort May 26, 2012 at 5:18 am

I agree it isn’t a lack of findings…if you look at 1992 in this article – The 20 Years Ago Today Series IV: 1992 and Now – What Have We Learned? http://phoenixrising.me/archives/10516 – you’ll see several possibly quite significant findings that 20 years later have never been followed multiple. Multiple that by 20 (if 1992 is representative) and you’ve got dozens of findings..

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Janelle May 26, 2012 at 8:30 pm

could you photoshop the graph? Move the blue line so that it’s all below 1,000M? I will send you one by email…

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