Wednesday, April 15, 2009

Letter Writing Time!

 
This week's Newsweek has an article:
 
 
I direct you to one paragraph:
 "Yet public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis). It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern."
 
 
CFS gets about $1/patient, so I don't know what they're *itching about!
 
 
 
You can post a comment on the website, but please also send a copy to:
 
 
 
HERE'S MY LETTER
 
Epilepsy advocates are rightly concerned that their $35 per patient research funding lags far behind other neurological diseases, such as Alzheimer's and MS, but they receive far more than the $1/patient spent researching Myalgic Encephalomyelitis (a/k/a "Chronic Fatigue Syndrome"). 

ME/CFS costs the US economy $26 billion each year, yet, in its BEST year received only $12 million in research funding.  Although CDC estimates it affects 4 million Americans, only about $4 million a year is spent on research for a treatment or cure of a neurological disease which produces a "level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis", according to Dr. Nancy Klimas.  By some estimates, 40% of patients are completely disabled by their disease and cannot work -- more than the 1/3 of epilepsy patients who cannot manage their symptoms. 
 
Some experts, most notably Dr. Richard Bruno in the US and Dr. Elizabeth Dowsett in the UK, believe ME/CFS is related to that most dread disease of all, polio.  Unlike epilepsy, ME/CFS is contagious, which means everyone is susceptible to suffering from it.
 
Yet, research funding for ME/CFS continues to lag behind other neurological diseases which are not contagious and therefore pose no threat to those who are not genetically programmed to develop them.
 
 
RESOURCES:
 
 
 
 


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