- And How You Can Make a Difference
From ProHealth Founder Rich Carson
I have been an ME/CFS patient since experiencing an acute onset in 1981. It was a mystery disease at the time, much the way it is now, and I was motivated to learn as much as possible in an attempt to get well.
But ME, as I now prefer to call it, got the best of me in 1987, and I had to quit my job as a stock broker when I became permanently disabled. Since that time I have spent thousands of hours involved in the ME/CFS world, serving as a support group leader, volunteer fund raiser, research coordinator, newsletter publisher, patient advocate, and supplement company owner. I was even selected to represent ME patients in the United States in the CDC's $4 million "Faces of Chronic Fatigue Syndrome" awareness campaign.
I have seen big things come along in the 31 years since I got sick: Dr. Martin's 'stealth virus', the Dr. DeFreitas retrovirus, HBLV, Dr. Grossberg's JHK virus, XMRV, and others. But I have never seen anything as big as the recent exchange between Courtney Miller and President Obama, which resulted in the President of the United States elevating the importance of "Chronic Fatigue Syndrome/ME" in the national healthcare system. That is so big that I don't think patients can imagine what it can mean to them.
This disease is such a national disaster from an economic perspective, that estimates about its actual cost to the country's economy have come in as high as $51 billion a year. If you think that sounds like a number pulled from a hat, then take a look at this illuminating report that covers estimates of the financial damage that ME inflects on its victims and upon the entire country (see 'Chronic Fatigue Syndrome: Costs to the U.S. Taxpayer).
When you bear in mind that the government has invested virtually nothing to understand the disease - about $6 per patient per year - and has essentially ignored this disease since giving it the disrespectful, trivializing, and inaccurate name 'Chronic Fatigue Syndrome' in 1987, you begin to see that the government has not only prolonged immense human suffering; it has cost the country billions of dollars by doing so - and it has cost lives. We are living in a strained economy, so this type of economic debacle needs to see the light of day.
Courtney and her husband, Bob Miller, are the most amazingly effective ME fighting team I have ever witnessed, as Bob is an incredibly effective patient advocate as well.
Together, they easily win my 'ME Advocate Hero of the Year Award'. You will read more about it soon, as ProHealth is preparing a story on the Millers, documenting their many sacrifices, adventures, and victories.
Courtney, Bob and I, and hundreds of other patients, have become interested in supporting important new ME research being funded through the nonprofit Simmaron Foundation - research that is being conducted by Dr. Dan Peterson, Dr. Sonya Marshall-Gradisnik and a dedicated research team at Griffith University in Australia. It is a world class group of ME researchers.
This research looks at the effects of ME/CFS on the immune system and central nervous system, with particular emphasis on understanding the pathology of the disease. This important research is already yielding fascinating results, and it is hoped that the findings will eventually give way to a diagnostic blood test for ME.
In promoting this research, I have become friends with Courtney and Bob, and my respect for their work is immense. Below is a letter from the Millers regarding Simmaron, President Obama, and the need for all patients - including you and me - to step up to the plate right now to donate a few dollars so that this important research can go on.
I hope you will take a few minutes to read it, and I hope you will make a financial contribution to help us end ME. The government spends $6 per patient each year - that's chump change for a disease this big. You can do as much as the government by donating $6 or $10 or whatever you can afford. I feel obligated to help carry the load. I hope you do too.
Wishing you health and strength,
A Letter from Patient Advocate Courtney Miller
My husband Robert has been ill with Chronic Fatigue Syndrome, or ME/CFS, for more than 20 years.
Last year, President Obama made me a promise at a town hall meeting in Reno, Nevada, to go back to the National Institutes of Health and see if they could do better than just $6 million allocated to scientific research into Chronic Fatigue Syndrome.
Recently, President Obama fulfilled his promise and became the first President to urge the Secretary of Health and the Director of the National Institutes of Health to "elevate CFS on the list of priorities" at our federal health agencies.
We are celebrating this milestone. Still, Bob and I know we have a long way to go before there are multiple clinical trials for treatments, a test for diagnosis, and doctors in every city who know the gold standard of care.
So, why did I ask the President about funding for scientific research?
That's why I am asking you to join us in contributing to Simmaron Research Foundation. Simmaron Research needs our support to fund a groundbreaking study in collaboration with researchers in Australia and Wisconsin to answer why Natural Killer Cells don't work correctly in ME/CFS patients.
Low Natural Killer cell function is one of the hallmark findings in this illness, yet very little research focuses on what goes wrong in those cells.
The Australian pilot study is already backed by a commitment of follow-on funding from an Australian foundation, meaning that Simmaron's funds will multiply by 5, turning $225,000 into more than $1 million of strategic research in our disease.
Simmaron is closing in on fully funding this pilot study, needing just $20,000 more.
What an amazing opportunity to turn every $10 contribution into $50 strategically aimed at researching the cells that are broken in ME/CFS patients.
Magnifying our research funding is paramount. Studying biomarkers is pivotal.
The Australian team, led by Dr. Sonya Marshall-Gradisnik at Griffith University, published a study in May 2012 entitled "Cytotoxic lymphocyte microRNAs as prospective biomarkers for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis." Furthering their research could change the pace of progress.
Please join Bob and me in completing the Australian pilot study and unlocking $1 million in sophisticated research for ME/CFS.
With hope and thankfulness,
Courtney and Bob Miller, Reno, NV