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Founder’s Corner: Important New Facts About Chronic Fatigue Syndrome

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The Centers for Disease Control & Prevention launched its $4 million CFS physician education and public outreach campaign at a well attended Washington D.C. press conference November 3, 2006. The three-hour event was led by CDC Director Dr. Julie Gerberding and Dr. John Agwunobi, Assistant Secretary for Health and Human Services. Also in attendance were CFIDS Association of America President Kim McCleary, many leading CFS researchers and clinicians, numerous CFS patients, and members of the press. Several facts and findings about CFS were publicly announced, and if you are like me, I think you will be a little surprised.

Consider the following statistics:

  • One million – Number of patients afflicted by CFS in the United States
     
  • 16% – Proportion of people with CFS who have received a diagnosis
     
  • At least 25% – Proportion of CFS patients who are disabled/not working
     
  • $20,000 – Average annual lost income for CFS patients' families
     
  • $9.1 billion – Annual cost to the U.S. economy in lost wages & income from CFS
     
  • 10 or 20 genetic aberrations – Reason most patients were susceptible to CFS
     
  • AIDS; MS; COPD; End Stage Renal Failure – Diseases with a level of suffering and disability similar to that of CFS.

These findings add perspective to what many patients know all too well: that CFS is real, that it is serious, and that it is frequently misunderstood by others as being just a "fatiguing" type of illness. You may even want to print this information to use as a handy reference tool when you're discussing CFS with your friends, family, and doctors. I'm afraid that even they may not realize the magnitude of suffering that patients experience.
 
I was surprised that at least 25 percent of patients are disabled. And I was surprised to learn that only 16 percent of patients in the U.S. have actually received a CFS diagnosis – which is particularly hard to understand considering that CFS causes the same level of disability as patients suffering from AIDS, multiple sclerosis, chronic obstructive pulmonary disease (COPD – the fourth leading cause of death in the U.S.) and end stage renal failure (terminal kidney disease). I wonder how much money the government spends every year to research those diseases.

The take-away from this is that CFS is just now earning the respect it deserves. Respect generates additional research funding, and that will lead us to effective treatments and eventually a cure.

Meantime, go to the CFIDS Association site ( www.cfids.org) to check out video highlights of the campaign kickoff, or read a full transcript of the presentations. And above all, take good care of yourself – it is more important than most of us think. Get plenty of sleep, eat a good diet, and avoid stress.

Keep the faith,
 
Rich Carson
Patient, CFS and FMS fundraiser, and founder of ProHealth

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