Thursday, May 12, 2016

MAY 12 AWARENESS DAY

"They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009.

Stop the verbal abuse -- educate doctors that it's real, it's serious, it's not psychological.
 
ME/CFS is NOT a 'minor disease'.

The disability rates among ME/CFS patients are similar to those of people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other equally serious diseases. Some patients endure years of being virtually home-bound or even bed-ridden because of ME/CFS.

Researchers at DePaul University estimate that every year ME/CFS costs the U.S. economy $17-24 billion*. Its prevalence, economic effect, disabling impact and chronicity make ME/CFS one of the most economically burdensome conditions of our time.
 
"ME/CFS is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death)." Canadian ME/CFS Consensus

"Research has shown that ME/CFS has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis." Hooper and Marshall

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V." Dr. Nancy Klimas
 
 

Slightly Alive: For May 12, 2016: ME is not a "mysterious" disease.

 
The whole point of this blog is that NIH and CDC behave as if we knew nothing about ME.  That is not true.  It is not so mysterious.  You do not have to start from scratch as you slowly turn to investigate it again.  Bethesda and Atlanta may have been asleep, but the research community was awake.
 
* * *
Dr. Dowsett noted that in 1988, when the CDC changed the name from ME to CFS, all knowledge about ME and its connection to polio was lost.  And CDC wanted it that way.
 
Fortunately, they couldn't erase the memory banks of older doctors, like Dr. Dowsett, who'd already learned that Myalgic Encephalomyelitis and Poliomyelitis are related.