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Underfunding of Fibromyalgia and Chronic Fatigue Syndrome research

Friday 11 March 2011

Piggy bank

From's Adrienne Dellwo:


Underfunding of Fibromyalgia & Chronic Fatigue Syndrome Research

By Adrienne Dellwo, Guide

The medical community has been aware of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) for decades, but we have incredibly few answers. What causes these illnesses? Why do they tend to run in families? What are the underlying mechanisms and how can we correct them? Are they communicable? How can we prevent them?

We don't have definitive, widely accepted answers to a single one. We don't have diagnostic tests, and ME/CFS doesn't even have any FDA-approved drugs.

Why don't we have answers? Because we haven't had enough research. And we don't have enough research because the government funding isn't there. We are not the priority. Some people say that's because these aren't fatal diseases -- things like cancer and heart disease and Alzheimer's need the research more. That may be true. While some ME/CFS researchers have turned up good evidence of heart problems and a higher-than-normal incidence of cancer, it doesn't kill at the same rate as some other diseases.

However, an article recently published by ME/CFS Worldwide Patient Alliance shows that FMS and ME/CFS are badly underfunded even when compared to other non-fatal or rarely fatal illnesses.

According to the National Institutes of Health, ME/CFS is down for $5-million in 2011, and FMS is getting $12-million. Compare that to multiple sclerosis (MS) -- $144-million. Even Tourette syndrome research is better funded than ME/CFS.

Is that because more people have MS? Most people would probably expect so, since MS awareness is high, but that's not the case. Look at these prevalence numbers:

  • Multiple Sclerosis: fewer than 500,000 people
  • Chronic Fatigue Syndrome: at least 1-million people
  • Fibromyalgia: at least 6-million people

So if funding accounted for prevalence, ME/CFS would get twice as much as MS, and FMS would get 12 times as much.

Meanwhile, we're left with debilitating symptoms and shattered lives. Even taking the human toll out of the equation, in doesn't make financial sense: the loss of productivity from 7-million+ people, the cost to Social Security disability, Medicare and Medicaid? Staggering.

I know, you have precious little energy to take up a fight against the government. Those of us who are able, though, need to do what we can -- with letters to elected officials, support for our advocacy groups, and donations to private research facilities that are trying to answer our questions. We need to be our own advocates and yell as loudly as we can until someone listens.

Learn more or join the conversation!


Fibromyalgia Facts
ME/CFS Facts
Diagnosing FMS & ME/CFS


The above, with comments, originally appeared here.

This is the report that Adrienne mentions in her article:


Government Research Funding

ME/CFS Worldwide Patient AllianceThe excuses government leaders give for failing to adequately research ME/CFS can no longer be  tolerated. With the recent retrovirus discovery and threat to the blood supply, every individual is at risk of developing a disabling NeuroEndocrineImmune disease. More ME/CFS research is the answer.  If ME/CFS had received appropriate funding since the outbreaks in the 1950s and 1980s, the world would not be facing a possible retrovirus epidemic.

Notice these funding amounts by disease when compared to the prevalence rate.

NIH Budget for 2012 and Disease Prevalence



Multiple Sclerosis

– $135 million

– 500,000 Americans



– $114 million

– 1.5 million Americans


West Nile Virus

– $46 million

– 3,630 Americans (2007)


Lyme Disease

– $25 million

– 150,000 Americans (since 1992)



– $9 million

– 3-6 million Americans


Chronic Fatigue Syndrome

– $6 million

– 1 million Americans


NIH Funding:

CDC 2009 Funding Request



Lyme Disease

– $5.246 million

– 150,000 Americans (since 1992)


West Nile Virus

– $19.277 million

– 3,630 Americans (2007)


Chronic Fatigue Syndrome

– $4.728 million

– 1 million Americans


CDC Budget Request for 2009:

Each year since 2006, the CDC has decreased the amount they request for ME/CFS research, yet the number of cases has continued to rise.

Analysis of NIH Funding of ME/CFS, particularly of new studies


The above originally appeared here.


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