Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have a long, long way to go before they get the attention and resources they deserve.  It would take a heroic leap to quickly achieve what people with these diseases deserve and what the diseases themselves – given their economic costs / burdens they impose  – should receive.  So much needs to be done  (funding, doctor education, drugs, other treatments) – and we’re coming from such a low place – that it seems almost impossible that it can be done in a reasonable amount of time.

In fact, people do the impossible – make what seems at first to be inconceivable differences in one area or another –  all the time. This blog is about a man who did that, and did so in a way that may directly help those with chronic fatigue syndrome (ME/CFS) and fibromyalgia.

christopher murray

Christopher Murray – from the University of Washington

Epic Measures: One Doctor. Seven Billion Patients” by Jeremy N Smith is about a man, Chris Murray, with an impossible goal – to accurately chart the health issues facing everyone on the planet. Murray has tried – and is succeeding – in doing what ME/CFS and FM advocates are trying to do on a smaller scale – to bring the true burden of illness out of the fog of incomplete, inaccurate and confusing statistics.

In doing so he’s created one of the largest scientific projects ever. It’s on the scale of the Human Genome project. He’s also a fascinating character. Confident, blunt, unbelievably hard-working, precise, committed, smart, collaborative, far-thinking. Murray both inspires and ruffles feathers where-ever he goes. It’s Murray that had the audacity to ranked the mighty, unbelievably expensive U.S. healthcare system 37th in the world.

Murray’s story of his struggle to identify and combat the immense and then largely unknown health inequities in the world will surely resonate with fibromyalgia and chronic fatigue syndrome patients.

To say that Murray grew up in an unusual family would be understating things. His father – a cardiologist, and his mother – a microbiologist – got bitten by the travel bug early. By the time Murray was 15 he’d been all over the western United States, Thailand, Turkey, Lebanon, Egypt, India, Kenya, Tanzania, Uganda, and Afghanistan, and spent, all told, over a year helping his parents and siblings treat gangrene, anthrax, guinea worm infections, malnutrition, tuberculosis, malaria and more. At 17 he was at Harvard studying under E. O. Wilson. He spent his junior year in Tunisia.

Murray was and is a force.  Preternaturally smart and confident, Murray’s main asset was and probably is his willingness to embrace large goals and his unswerving dedication to them. Exposed early to the horrors of medically deprived poor people in developing countries, Murray was bound and determined to something about that.

His undergraduate thesis involved how to make the whole world healthier. He began studying international economics to understand how money was allocated to improve health.

The first bump in the road came quickly.  Child death, child illness, and overall mortality figures – none of them added up.  UN and World Health Organization (WHO) figures indicated that more children were dying every year from common childhood diseases then were dying in total.  Some international health statistics cited seemed to be figments of officials’ imaginations.  Life expectancy rates in countries could drop or climb enormously from one year to the next.  At some point the UN decided that every county in the world would experience an increase of 2-4 years in life expectancy every five years, and simply tacked that number on to their estimates.

Inconsistent, inaccurate data sets drive Murray nuts

Inconsistent, inaccurate data sets drive Murray nuts

These mismatches bothered few at the WHO or UN who where happy to use whatever figures best promoted their projects, but it bugged the heck out of Murray. Railing both in print and in private against the use of made up numbers to assess health needs and funding, he became a pain in the butt at WHO headquarters.

With a degree in International Health Economics under his belt, Murray dug into the gap between health needs and funding. Murray’s first big finding came with his discovery of the 10/90 gap which indicated that 90% of the people with health needs (all found in the developing world) got less than 10% of health funding.  (It was actually more like 5/95). That finding resonated, triggering hundreds of papers and dozens of conferences.

Murray next identified tuberculosis (TB) as the single most deadly pathogen on the planet. Despite the fact that TB killed almost 3 million people a year – almost all of them in the developing countries – the World Health Organization had one person working on it. Amazingly, TB was one of the easiest and cheapest diseases to treat if caught early. Vast amounts of health care dollars could be saved if early diagnosis and treatment was emphasized.

WHO had lost sight of TB for some of the same reasons that the NIH has lost sight of ME/CFS and FM. Nobody, Murray said, was standing back and looking at the big picture. Instead, TB was siloed, considered difficult to treat and sidelined. Murray’s Science article put TB back on the map. Two years later Murray was the chair of a WHO steering committee on TB, and one year later the WHO made TB control a top priority – saving an estimated 5 million lives over the next couple of decades.

Murray’s quote regarding TB applies perfectly to ME/CFS and FM’s situation at the NIH:

“If you don’t have the big picture, it’s incredibly easy for groupthink to lead you to focus on a limited number of things and you might miss what’s really important.”

The TB episode made an indelible imprint on Murray’s subsequent work. Uncovering the TB debacle was one thing but framing the information in such a way that researchers and policy makers couldn’t ignore his findings was key. From then on finding ways to effectively communicate his findings became a key goal of his.

In the 1990’s the international public health field was staggeringly primitive with almost all funds being devoted to children’s health. Murray wondered, though, about the rest of life.  Adults suffered enormously from various diseases but almost no one was tracking their pain and suffering. As he walked his hospital rounds in Boston, Murray came across people who would clearly suffer from diseases for decades before they died. They were the uncounted sick.

burden of illness

Murray’s goal – accurately characterizing the burden of illness across the world

Murray’s next job was immense – to find the way to quantify the impact ill health has (burden of disease) for every human on the planet. It was an enormous job but a necessary one. How could our health care systems provide the maximum good without knowing who to devote their resources to? In the early 1990’s a body not associated with global health – the World Bank – took Murray and his ideas on; its goal – create a World Development Report that prioritized health care needs for the entire world.

Murray took two figures – years of life lost to an early death and years of healthy life lost due to disability and mashed them together to create what would come to be a touchstone concept in  public health – “disability adjusted life years” (DALYs).

By the end of 1993 Murray and his team were done. Their conclusions startled. Ninety percent of the WHO’s funding went to worthy goals (reducing communicable diseases, pregnancy, childbirth and early childhood) which accounted for less than half of the total illness burden.  Many diseases and conditions that contributed to enormous unmet health needs in the developing world (injuries, depression, suicide, osteoarthritis, dental problems and heart disease) were getting no attention at all.

Murray’s findings suggested that developing countries shift their resource allocations from specialized care to low cost and effective programs on immunization, hunger relief and infectious disease control.

Advocates for neglected causes of illnesses noticed and began using Murray’s findings (particularly with regards to psychiatric diseases and musculoskeletal disorders) to lobby for increased funding. Mexico jumped on board first, sending a team to Harvard to learn how to apply Murray’s work. Their work “Health and the Economy” proved to be a landmark for Mexican healthcare.  Since the 1950’s Mexico’s healthcare system had been focused on communicable diseases and pregnancy. Now the biggest health problem was unintentional injuries followed by cardiovascular disease.

Murray’s next job – at a World Health Organization under a reformer President Gro Harlem Brundtland – demonstrated what happens when an institution is unable or unwilling to accept change. Murray brought a new ethos – long working hours, a commitment to precision and efficiency – that thrilled some and horrified others who’d become used to the perks and lax work environment at the WHO.

Plus Murray wanted to up the ante considerably; no longer satisfied with describing the health problems people faced, he wanted to rank – from best to worst – how well nations were meeting those challenges.

That idea sent the bureaucrats, Murray said, “ballistic” at the anger of the countries on the low end of the scale, but Brundtland held firm. The work, which she hoped would result in massive improvements in health systems around the world, would go on.  Bringing better health – not sheltering delinquent countries – was, after all, the WHO’s mandate. Murray was given the green light to bring his laser-like focus to the worlds health agencies.

Checkout times at he job went from 7pm to 10 pm – weekdays and weekends. Murray took to riding a scooter up and down his floor’s long halls to check on the work.  The World Health report was released to predictable controversy on June 21, 2000. The country results turned the world health agencies on their head. The fact that France was first wasn’t so controversial, but how in the world did the U.S. drop to 37th just below Costa Rica? (It was first in health system responsiveness but 24th in healthy life expectancy and 54th in the fairness of financial contribution – a measure of how many households could not afford health care.) Colombia, now a basket case, was ranked 22nd – above Sweden and Germany. China, long thought to have a decent public health system, was 144th.

WHO’s decision-making body is made up 191 national delegates. Vehement protests followed. A independent WHO review of the document supported Murray’s findings but then Brundtland, Murray’s backer, retired and Jong-Wook Lee, a 20-year WHO veteran from South Korea took over. Lee quickly cut Murray’s staff from 22 to 2, and Murray was done. The reformer had failed.

WHO

Murray’s time at the WHO ended when the reformer President left

Not all was lost. Mexico – ranked 144th –  took Murray’s work to heart. Between 2004 and 2010, reasoning that it would ultimately save money by doing so, Mexico doubled its investment in health care. The number of physicians per person increased more than 50%, nurse availability by 30% and the number of people forced into bankruptcy by medical costs shrank to almost nothing. By 2012 universal health insurance was available and Mexico was redirecting it’s programs to fulfill the needs of its people.

In the U.S. resistance to any idea of national health care left it stuck where it was. The most expensive health care system in the world was 39th in infant mortality, 42nd in male mortality and 36th in life expectancy.  Disparity in health care spending was one cause; the gulf between the best and worst off in the U.S. was more extreme than between Switzerland and Somalia.

Back at Harvard Murray’s needs were simple; he simply needed $100 million or so to produce an accurate assessment of the world’s true health needs. When Jim Ellison of Virgin offered to fund a $115 million project at Harvard to analyze and critique the world’s health efforts only to back away at the last minute, Murray was devastated.  His dream of an independent and accurate assessment of worldwide health seemed to be over.

Enter an even wealthier man.  After Bill Gates announced his retirement from Microsoft he asked a past CDC chief what to do with the almost 100 billion dollars he’d accumulated. GIven a list of 82 books to read, Gates quickly devoured 19 of them but one –  Murray’s 1993 World Bank report  – stood out. In fact, it changed Gates entire focus on what to do with his wealth.  Flabbergasted that so many people were dying for lack of a few dollars, Gates turned to global health care and began giving away his money.

First came the 125 million dollar gift to found a child vaccine program. Gates said his hand trembled as he wrote a $750 million dollar check to support a global alliance for vaccines and immunization.  (He would end up devoting several billion to the effort.) The announcement that the $16 billion dollar Bill and Melinda Gates Foundation would be using Murray’s disability-adjusted life years lost (DALYs) to assess health care needs vindicated Murray’s approach. As Warren Buffet and other billionaires joined Gates’s cause it was clear a new era in global health philanthropy had begun.

But Murray himself was floundering.  Finally meeting with Gates he found another data freak with a like-minded penchant for precision and a hatred of inefficiency. The last thing Gates wanted to do was give his money away ineffectively. Murray’s pitch that an independent academic institution tracking the world’s health spending and inequities was needed worked. Gates had  only one stipulation – the University of Washington in Seattle, not Harvard, would be the Institute’s home.

Bill and Melinda Gate Foundation

Bill Gates came along at the right time to fund Murray’s vision

With that the $125 million Institute for Health Metrics and Evaluation (IHME) was born.  The first task was simply determining who died from what. Even in 2007 the cause of only 25% of the world’s deaths were recorded in a database the Institute had access to. Data from thousands of hospitals and clinics, health care systems, etc. had to be accessed. Plus Murray being Murray added a new twist; he determined that besides everything else the Institute was doing, it would also analyze 70 risk factors from smoking to diet to wearing seat belts for every country. Murray wouldn’t only identify health needs, he’d identify how to stop illnesses in the first place.

Almost five years, fifty full time staff and 500 co-authors later, the Global Burden analysis was complete. Almost three hundred ailments, 235 causes of death, 67 risk factors plus mortality rates, life expectancy rates, disability rates, etc. were compiled for 187 countries into a publicly available, easy to comprehend database.

 

In December 2012 the Burden of Health Reports from the IHME filled the largest issue of Lancet and the first issue ever devoted to one topic. The figures shocked.

In 2000, the World Bank, the WHO, the United Nations and several dozen international health organizations had agreed to focus on five health goals for the developing world: reduce child and mother mortality and stop the spread of HIV/AIDS, malaria and TB. They were worthy goals, but the Global Burden suggested that they were ignoring 70 percent of the illness burdens afflicting poor people.

Global life expectancy had increased dramatically since 1970. In fact the average global life expectancy (@70 yrs) in 2010 was equal to what was found in the best-off countries in 1979. This unexpected finding had huge implications for the world’s health care systems.

  • Diseases of affluence such as heart disease, stroke and diabetes had become top killers in developing countries. That meant treatments like insulin, blood pressure medications, and chemotherapy should be on the international health donors’ lists.
  • Women lived longer than men but were significantly disadvantaged with regard to disability and spent much more time in poor health.
  • The things that caused disability in large part weren’t the things that people died from.
  • Major depression caused more total health loss than tuberculosis.

While causes of death often varied widely from region to region the causes of disability – the stuff that made you miserable and prevented you from functioning but didn’t kill you – was consistent from country to country. Only one (anemia) was being addressed by the international health care community.

Top Ten Causes of Healthy Life Lost to Disability

  • Low back pain
  • Major depression
  • Iron deficiency anemia
  • Neck pain
  • COPD (chronic obstructive pulmonary disease)
  • Musculoskeletal disorders
  • Anxiety
  • Migraine
  • Diabetes
  • Falls

A figure which combined both years lost to disability and death from illness, disability-adjusted life years  (DALY’s) revealed that diseases of affluence (heart disease, stroke) were now numbered among the world’s greatest illness burdens.

Disability Adjusted Life Years

  • Heart disease
  • Lower respiratory infections
  • Stroke
  • Diarrheal disease
  • HIV/AIDS
  • Low back pain
  • Malaria
  • Preterm birth complications
  • Chronic obstructive pulmonary disease (COPD)
  • Road injuries

A list of the top ten risk factors revealed more changes.Being underweight had previously been a major problem but now being overweight, high blood pressure, alcohol use and high blood sugar were causing more illness.  Household air pollution’s contributions to lung and heart disease, stroke and cancer indicated that bad air was far more problematic than lack of access to clean water – a major international health priority.

Differing risk factors indicated that a one size fits all approaches don’t work. Alcohol abuse contributed to a quarter of all mortality in Eastern Europe and Russia, tobacco was a major issue in Europe and North America, high blood pressure driven by high salt intake was a big deal in Asia and the Middle East, obesity and diabetes was rampant in Mexico, violence in Honduras and El Salvador.  Poisoning was a real problem in Eastern Europe.

Realizing  that communication was  key, Murray created a visual program called GBD Compare that allowed anyone to easily understand his findings. Simply by pointing to an area of concern in a country the GBD Compare could show you the health losses from any disease at any age and gender, and the risk factors contributing to it. Digging down through GBDx Murray could show that HIV/AIDS – easily the single biggest item in the NIH’s budget – accounted for only 1.1% of years lost to early death in the U.S. Heart disease accounted for 16%. One third of the years of life lost to early death from violence in America was attributed to alcohol use.

GBD Compare

GBD Compare does not include fibromyalgia or chronic fatigue syndrome

Mental health was revealed as a huge drag on society worldwide with 40x’s the impact on disability as cancer.  The three biggies for disability were mental health, musculoskeletal disorders and diabetes.  The UK’s below average healthy life expectancy was attributed to poor diet, smoking and alcohol and drug use.

The Burden of Illness (BOI) report was a huge success but Murray, of course, wasn’t done. Next up was determining BOI for regions and even cities, figuring out how education level impacted health, delineating the barriers to accessing health care, analyzing the effectiveness of health care systems, tracking personal health in communities and more.

Smart, incredibly hard-working and creative and committed to making a difference, Murray has had it going on almost all levels. Deeply embedded in the academic community, he’s much more than an academic pouring out papers. For one, his vision – birthed in the devastation of the Sahara desert  – to bring clarity to the entire world’s health problems was almost unthinkable. For another, early on he realized that communication and getting access to decision-makers was key.

In the end, Christopher Murray ended up achieving the impossible and in doing so revolutionized our understanding of the world’s health.  Bill Gates’s help, of course, cannot be understated. Murray had the gift of good timing to be promoting his project just as the world’s wealthiest man began looking for ways to make a difference.

It was Murray’s expose of the tremendous health inequities around the world that first aroused Gates’s attention and that brings us to our own challenges. Here, surprisingly, Murray lets us down. No information on fibromyalgia or chronic fatigue syndrome that I could find exists in Murray’s worldwide database.

The issue may be lack of  good data but Murray has found ways to deal with data issues before. In fact, he’s argued that incomplete data should never halt analyses or keeping health policy makers from implementing policies. Unless I’m missing something, though, Murray and the IHME are completely ignoring diseases affecting millions of people across the U.S. and accounting for many billions of dollars in economic losses a year.

That’s unfortunate but by bringing light to health inequities across the globe and by providing ways to quantify them Murray has laid the groundwork for diseases like chronic fatigue syndrome and fibromyalgia to get the resources that they need and that work has begun.

In a landmark paper Mary Dimmock and Lenny Jason have begun to fill in the gaps by extrapolating the disability-adjusted life years (DALY’s) for chronic fatigue syndrome (ME/CFS). Their figures indicate that given the illness burden ME/CFS imposes it should be receiving many times the funding it now gets. That’s the kind of information advocates can use to get these diseases the resources they need.

A blog on that paper will be up shortly.

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