Lack of Government Funding for ME/CFS & Fibromyalgia Research

The buzz among ME/CFS & Fibromyalgia patients and bloggers is the latest government funding figures for 2011 for ME/CFS & Fibromyalgia research, which were posted by the ME/CFS Worldwide Patient Alliance recently.  For years, ME/CFS & Fibromyalgia research has been underfunded because the government feels that there are other illnesses that are more worthy of research money.  I guess they figure that we’re not terminal or dying in large numbers from the illness, so we’re not a top priority.   Many of us bloggers have written on studies and incidences of ME/CFS deaths, the articles on heart problems found in ME/CFS and that there may potentially be a higher risk of cancer for us.  But none of these have fueled the fire under the government’s rear ends to help us out.

ME/CFS is the least funded disease on the chart listed by the ME/CFS Worldwide Patient Alliance and we will never have answers to this damn disease until there is proper funding.  Fibromyalgia is underfunded as well, but at least there are FDA approved drugs to treat it.  ME/CFS has nothing at all – no drugs, no answers. 

Now that XMRV and the scare with the risk to our nation’s blood supply has come into play, you would think this would prompt the government to allocate more funds to ME/CFS research, especially in 2011.  But this was not the case.   The ME/CFS Worldwide Patient Alliance says:

The 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 neuro-immune disease. More ME/CFS research is the answer.  If ME/CFS had received appropriate funding since the outbreaks, tax payers would have saved millions in disability payments and the world would not be facing a possible retrovirus epidemic. We cannot afford any further delay. Delay means lives. Our governments must fund substantive biomedical research and clinical trials NOW.

So you would think that all of diseases that are receiving higher funding than ME/CFS and Fibromyalgia are illnesses like cancer, AIDS, etc.  They’re not – many are chronic illnesses like ME/CFS & Fibromyalgia that are believed to be autoimmune in nature.  Look at the numbers of patients after each one I have listed as well.  See why this has so many of us infuriated:

Multiple Sclerosis – $144 million funding – 500,000 Americans

Lupus – $121 million funding – 1.5 million Americans

West Nile Virus – $63 million – 3,630 Americans (in 2007)

Lyme Disease  – $26 million – 150,000 Americans (since 2002)

Fibromyalgia – $12 million – 3 – 6 million Americans

Chronic Fatigue Syndrome – $5 million – 1 – 4 million Americans

Psoriasis research will receive more funding in 2011 than Chronic Fatigue Syndrome ($8 million).  Now what does that tell you about what the government thinks of us?   To view the list of all of the NIH funding allocations, you can view the link below:

Estimates of Funding for Various Research, Condition, and Disease Categories

Every year since 2006, the CDC has decreased the amount of money they request for ME/CFS research, yet the number of cases continues to rise.  Here’s an example of the CDC’s budget requests in 2009 for three illnesses:

  • 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’s 2009 Budget Request Summary

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    1. I think you hit the proverbial nail on the head. These numbers and funding quite factually and bluntly state that ME/CFS is not important or that it is not percieved as a viable illness, thus, funding is not necessary.

      I recently heard that MS has 3-4 research centers while ME/CFS does NOT HAVE EVEN ONE research center.

      This is just unacceptable and frustrating to say the least!

    2. brenda haas says:

      i have been suffering with fibromyalgia for 15 yrs i am 38. i have been getting worse for the last 4yrs and nothing i try or my dr tries seems to help. i hurt constantly even though i am on vicodin it barely touches the pain. i have trouble sleeping which of course doesnt help with the fatigue syndrome and fibro fog which is awful when i cant even think clearly to do my job or even pay my bills i have applied for disability but they turned me down i am on my feet for 7 hrs a day which makes the pain unbarable. we need help from some kind of funding i am planning to retire in 2 yrs when my last child graduates but we really cant afford for me not to have income. my mom has it to and a cousin and 2 aunts in my family and they all have hard time dealing with this disease that there isnt anything they have to treat it that actually works i was on lyrica no help another med for ms they tried no help and lidocaine shots no help. and going to all these drs and buying pills that dont work gets exspensive even though i have insurance. so what do we do when doctors dont even know for sure what this disease is or how to treat it.

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