Saturday, October 11, 2014

Letter to Bill Gates

Dear Mr. Gates,
I'm writing you here because I cannot say what I need to in the 512 characters allowed on your blog.

Perhaps you could write a blog about why an ultrarich man like yourself does not give millions to research the cause(s) and treatment(s) of myalgic encephalomyelitis, a neuroimmune disease that afflicts from 1-8 million Americans and at least 17-100 million persons worldwide. This disease has been acknowledged by the W.H.O. as a neuroimmune disease since 1969. More recently, the American CDC renamed it chronic fatigue SYNDROME and basically threw all patients under the Federal bus. It has been called Low Natural Killer Cell Disease in Japan for decades. Patients suffer as much as those who have malaria or dengue.

Could it be because you didn't know this devastating disease exists? Now you do!

I appreciate what you have done for malaria research and treatment but the Feds spend millions on that already. In fact, the NIH spends more on male pattern baldness research than it does on M.E. research.

M.E. takes our lives without quite killing us, at least not right away. I have been disabled by this disease since 1982. I live in extreme pain, indescribable exhaustion and grinding poverty without hope of a treatment or cure in my lifetime. I function at about 20-25% of normal.

Perhaps you could spare a million or five for:

1 - The Open Medicine Institute, in Mountain View California

Here's a link to their latest efforts:

2- OFFER (Organization for Fatigue & Fibromyalgia Education & Research)

3- Simmaron Research

"The Need: Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) is a debilitating, chronic neuroimmune illness which affects multiple body systems and substantially impairs functioning in patients."

4 - Ian Lipkin's research @

5 - Please do not donate money to the CDC. It would be wasted. The CDC has ignored us or treated us badly for decades, has diverted the money Congress ordered them to use for CFS/ME research and gotten away with just a slap on the wrist for it. Last year the NIH allocated a mere $6 million to research on this disease, despite the fact it is more disabling than MS, heart disease, cancer and many other highly funded diseases. Right now they are spending $1 million to rename the disease -- again!!

Dr. Nancy Klimas, physician and researcher into ME/CFS and HIV/AIDS has said if she had to have one of those diseases, she'd prefer to have AIDS. It can be diagnosed and treated and her AIDS patients are mostly hale and hearty while many of her ME/CFS patients are like AIDS patients near the end of their lives. She has recently received funding to research GWI and has added ME/CFS to that research project.

1 comment:

  1. I have had this hoorible life stealing disease since 1993. PLEASE HELP!