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Key ME/CFS Research Project Needs Patient Support

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Dear ME/CFS Patient,

I recently got some shocking and very scary news.

I received the news the hard way – on YouTube. The message I heard was this: “You are in a group of ME/CFS patients who have, or are likely to develop lymphoma. This can be lethal cancer. It can take your life.”

This was the essence of the words spoken by one of the world’s most beloved and respected ME/CFS physicians and researchers, Dr. Dan Peterson, over the speakers of my laptop as I watched him deliver a riveting presentation on the state of the art in ME/CFS research to a Stockholm audience Dec 8, 2011. I am in a group of 7 of his patients who are positive with a marker called ‘clonal T-cell receptor gamma chain gene rearrangement’, 5 of whom have already developed lymphoma. I felt like I had just been given a death sentence.

Unfortunately, the risk of developing cancer related to ME/CFS is not limited to just the 7 of us. A study published last month by the National Cancer Institute confirmed Dr. Peterson’s earlier findings that ME/CFS patients have a significantly increased risk for developing non-Hodgkin lymphoma. For many years we were told that ME/CFS is a benign illness, but now science has revealed the truth. Not only can ME/CFS be severely disabling, in some cases it can result in a cancer that can ean be fatal.

This is why now it’s more important than ever that ME/CFS research be stepped up before more patients lose their lives to this devastating disease. We can’t depend on the federal government to do the job. We know that. The NIH spends only $6 million a year on ME/CFS research – that’s less than $6 per patient. So we have to look to private research organizations to step up to the plate and help us.

New Research Organization Focuses on ME/CFS

Enter Simmaron Research Foundation, a dynamic new 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.

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.

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.

Simmaron’s top priority is to fund the important pilot study it began last year, which 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. 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 $75,000 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. Patients and our loved ones are the heroes after all. But we are still short $150,000.

That means $830,000 in possible ME/CFS research is up for grabs. All we need to do is raise $150,000 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 together 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

Visit today to fund your research now!

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