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The Most Important Two and a Half Minutes in ME/CFS History

  [ 329 votes ]   [ Discuss This Article ]
By Rich Carson • • September 10, 2012

From the desk of Rich Carson
ProHealth Founder and
Chief Fundraising Volunteer

Dear ME/CFS Patient and Loved Ones,

Courtney Miller had her question ready to go for President Obama during a 2011 presidential visit to Reno, Nevada. On that fateful afternoon, the President picked her out of a large audience and was moved by her question: "Mr. President...I'm asking you for my husband and my kids, who want their father to be able to go to their baseball games... if there's a way to make improvements on the meager funding by the National Institutes of Health into ME/CFS research."

Their two-and-a-half-minute exchange marked the first time a president of the United States ever publicly uttered the words "Chronic Fatigue Syndrome"; and it was the first glimmer of hope that government may someday treat ME/CFS with the same respect it reserves for other serious diseases.

To the joy of patients and researchers alike, President Obama responded to Courtney's plea in a two-page letter urging the nation's top federal health officials to elevate ME/CFS on their list of priorities.

This breathtaking development suggests the government will finally take responsibility for the devastating disease that affects one million Americans and causes total disability in up to 25% of its sufferers. Up to now, the government has avoided facing "CFS" like the plague and funding has been woefully inadequate. This dearth of funding is partly related to the trivializing name that CDC officials gave to the disease 25 years ago, for which patients have had to pay dearly in lost respect and dignity. How could a disease called "Chronic Fatigue Syndrome" be taken seriously enough to garner funding anyway?

Calling this disease 'Chronic Fatigue Syndrome' is like calling Alzheimer's 'Chronic Forgetfulness Syndrome.' As silly and un-serious as Chronic Fatigue Syndrome sounds, it is a deadly serious disease that devastates its victims and renders their immune systems and nervous systems dysfunctional. Sufferers are at an increased risk for developing cancer, heart disease and a myriad of other serious diseases. And these maladies hit earlier in life than in the general population. Labeled malingerers, patients are stigmatized, ignored, and left to suffer on their own. They disappear and become invisible. Many commit suicide.

Economic Costs of ME/CFS
Government studies have shown that the economic loss caused by ME/CFS is staggering, amounting to $17 billion a year in lost productivity alone. One government study concluded that the government itself loses nearly $5 billion per year due to lost taxes, Medicare costs, and disability payments. This is particularly interesting because the government spends only $6 million per year to research the disease. Spending $6 million to research a disease that costs American taxpayers billions of dollars is fiscal irresponsibility at its worst. And $6 million is chump change for such an important disease; it's "go away" money.

Let's compare ME/CFS funding to another disease that is similar to ME/CFS in many ways -Multiple Sclerosis. MS affects approximately 400,000 Americans and garners $120 million in government funding. That's $300 per patient per year - compared to $6 dollars per patient for ME/CFS. That means that Multiple Sclerosis gets 5000% - 50 times - more research funding than ME/CFS! The government has ignored ME/CFS forever. Now that President Obama is involved in the ME/CFS research debacle, I believe that will change.

The Door to Change is Wide Open
Courtney Miller's emotional plea to the president opened the door to change and resulted in two things that ME/CFS patients have never had: respect and validation. President Obama not only took the time to study ME/CFS thoroughly, he proved it by referring to the disease as both Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, showing that the highest official in the nation knows that CFS and Myalgic Encephalomyelitis are indeed the same disease.

The President responded by asking the nation's top health officials to look carefully at ME/CFS to see if the government can do more. And he still wants more feedback. Because of this, patients have the opportunity to be heard by the President of the United States about the disease that has cost us so dearly. We are finally looking at a golden opportunity to right two monstrous wrongs at the same time: to get fair funding, and to change the trivializing, degrading name Chronic Fatigue Syndrome to the medical name that has been used for 60 years in more than 50 countries - Myalgic Encephalomyelitis. It is time for the hurtful, humiliating 'fatigue' label disappeared forever.

You Can Make a Difference Now
Patients need to seize this opportunity to make this happen. The first thing we should do is write to President Obama to thank him for his interest in ME/CFS - and for his sensitivity and correctness in calling this disease Myalgic Encephalomyelitis. Let him know that you or a loved one has been devastated by ME, and that you appreciate his personal involvement in the disease. Tell him we need funding that is commensurate with the seriousness of the disease, and that the name 'Chronic Fatigue Syndrome' degrades its sufferers and must be changed. It's important that the President realizes that ME affects lots of people - and lots of voters.

If you prefer, copy and paste the letter below into your e-mail browser and send it to the President at . Please cc a copy to Courtney Miller, too, at the email address provided below. If you can, tell the President how ME/CFS changed your life, and what your life might have looked like if you had not succumbed to this disease.

I've been a patient since 1981 and an activist since I became a support group leader in the mid '80s. I've seen lots of exciting things come and go. But I've never seen an opportunity as good as this for patients to see the two most important things we need-research that will lead to a cure, and a new disease name that will help us regain our dignity and the respect of anyone who learns that we have a serious disease that is not a "fatigue syndrome." They go hand in hand.

There has never been a better time for patients to make a difference than right now, and the ball is in your court and mine. I hope you'll join with me by writing to President Obama to thank him for his interest and to let him know that he's on the right track.

Wishing you new-found hope and respect,
Rich Carson
Rich Carson
ProHealth Founder; former support group leader

Sample Letter

Subject: Thank You for Elevating Chronic Fatigue Syndrome

Mr. President:

Thank you for your kind attention into Chronic Fatigue Syndrome. I am a patient with Myalgic Encephalomyelitis ('CFS') and I have suffered hardships at the hands of this disease that most people will never know. I have seen my government disrespect me and other patients by calling our horrific disease by the very un-serious, un-medical name, 'Chronic Fatigue Syndrome.' I have seen my government turn its back on a million victims by failing to sincerely try to understand and treat my disease; and I have seen my government ignore common sense economics by spending only a paltry $6 million to fund research for a disease that costs the United States billions of dollars in lost tax revenues, Medicare payments, disability payments, and lost productivity.

Thank you for elevating the priority of Chronic Fatigue Syndrome, and thank you for encouraging HHS, NIH, and CDC to treat this disease as fairly as they would any serious disease - by appropriating necessary funding that is commensurate with the seriousness of this disease. I also ask that you encourage health officials to change the disrespectful, disparaging name 'Chronic Fatigue Syndrome' to the medical name it has been called in most of the world for over 60 years, Myalgic Encephalomyelitis.

I am certain your leadership will be a turning point in the ME/CFS health crisis affecting a million Americans, and I and my family and friends are deeply grateful for your efforts to give me hope of a life without chronic suffering and pain.


Number of years ill

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