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ME/CFS Patients Have Heart - A Letter from ProHealth Founder Rich Carson

  [ 67 votes ]   [ Discuss This Article ]
By Rich Carson • • August 18, 2012

Dear ME/CFS Patient,

Last month I sent you a letter telling you about a very important ME/CFS research opportunity with Simmaron Research Foundation* and encouraging you to help support it. I want to thank you for your wonderful response. I'm happy to report that Simmaron received 175 gifts totaling $12,000. That means there will be $60,000 more in ME/CFS research done thanks to your generosity!

In the last letter, I shared my own personal story of how I learned that I am one of a small group of people with ME/CFS who is at high risk for developing non-Hodgkin lymphoma. Many of you wrote to me expressing your concern for me, for which I am deeply grateful. However, I also received a few notes from people who were offended by my revelation, feeling that I was using scare tactics to get them to donate money.

I want to assure you that it was never my intention to scare you into making a donation. Rather I wanted to emphasize the fact that there is an urgent need for more quality ME/CFS research and that right now, with Simmaron Research's cerebral spinal fluid study, we have an unprecedented opportunity to multiply our research dollars five times over.

The sad fact is that for at least a subset of ME/CFS patients like myself, there is a higher than average risk of developing cancer. That's not a scare tactic; it's simply reality. It is also a reality that a 2006 study showed that people with ME/CFS have an increased risk of premature death from not only cancer, but also from heart failure and suicide.

The major risk we face as ME/CFS patients, though, is the loss of our quality of life. That's not only a risk but also a reality for virtually every person with ME/CFS. This disease prevents us from living the life we want to live - the life we deserve to live.

Because of these risks, we simply can't afford to wait until the government decides ME/CFS is deserving of more research dollars. We have to help ourselves now. Our lives may depend on it.

The research project I told you about last month is focused on analyzing the cerebral spinal fluid of patients in an effort to understand the neurological and immunological aspects of the disease, as well as to identify a biomarker for ME/CFS. Researchers working with Dr. Dan Peterson on the study have reported promising early results and everybody is excited. A biomarker for ME/CFS would mean early diagnosis. Most important, it would legitimize 'Chronic Fatigue Syndrome'. We desperately need that to happen.

$830,000 Up For Grabs!
The Mason Foundation in Australia believes in this research so much, it has dedicated $830,000 to fund the second part of what is the largest-ever collaborative international ME/CFS project. But with one caveat: phase I of the study must first be funded.

Patients have already raised the first $87,000 of the $225,000 needed to complete phase I, thanks in particular to the kind generosity of Linda Tannenbaum of the Neuro-Immune Disease Alliance, Inc. and to your recent donations. Patients and our loved ones are the heroes after all. But we are still short $138,000.

That means $830,000 in possible ME/CFS research is up for grabs. All we need to do is raise $138,000 more to get it. We can't count on the government. But we can count on ourselves to do what is right, and we can count on support from our family and loved ones.

So I challenge patients and other members of the ME/CFS community to make this research happen. Donate a dollar, and the Mason Foundation will multiply it by $5 - that's already as much as the investment the government made for you last year. Make a $10 donation and buy $50 worth of research. Donate $1,000 and we are $5,000 closer to our goal of getting well. Patients have never had such a good opportunity!

Go to Simmaron's website ( to make a tax deductible contribution to fund this research. If we don't pay for research ourselves, patients' lives will continue to be wasted, and some lives will even be lost. This is our chance to make a difference. I have faith that we will.

Our goal is early diagnosis, treatment, and a cure. Patients and dedicated researchers are making it happen now. We are working together as a community to raise money to fund our own research. But we need your help. There has never been a better time or a better opportunity to fund ME/CFS research. I ask that you visit Simmaron's website today to make a tax deductible donation to support research that will give patients a better tomorrow. Every dollar you give buys five dollars of research.

Your fellow patient,
Rich Carson
Rich Carson
ProHealth Founder; former support group leader

Twitter @RichCarsonsDeal

P.S. Help us spread the word. Forward this letter to your family and friends and encourage them to join you in supporting this important ME/CFS research opportunity.

* More About Simmaron Research:
Simmaron Research Foundation is a dynamic new nonprofit organization that was founded by the ME/CFS patient and medical community to solve the mystery of this devastating disease. Their goal is two fold - find biomarkers that will lead to a diagnostic test for ME/CFS, and find effective treatments.

Dan Peterson, MD, considered a founding father of modern day ME/CFS medicine, has given them access to the rich repository of biological samples, data and records that he has collected over more than 25 years of clinical work and research.

A look at the list of researchers who are working with Simmaron and Dr. Peterson, one of the Foundation's scientific advisors, reveals some giants in the field of virology, immunology, and cell biology. These guys know what they are doing.

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