Guest guest Posted August 19, 2012 Report Share Posted August 19, 2012 http://bit.ly/NzjeVG The Indiana Gazette.com LLEWELLYN KING: Obama responds on chronic illness Posted: Saturday, August 18, 2012 lking@... On April 21, 2011, at a town hall meeting in Reno, Nev., local resident asked President Obama for help. Specifically, she asked the president what the administration was doing to fund research into the debilitating lifelong illness Chronic Fatigue Syndrome, also called Myalgic Encephalomyelitis. ```` 's husband, , is a sufferer. The president has now responded extensively. Obama has designated his deputy chief of staff for policy, -Ann DeParle, as his point person for dealing with the disease and to work with the National Institutes of Health. She has been in contact with by email and phone. The president has asked DeParle to convey a sense of urgency about CFS and to raise its standing. In a two-page letter to , he said: " I have asked -Ann to stay in touch with Dr. (Francis) at NIH and Dr. () Koh at HHS (Health and Human Services) about my interest in their efforts on CFS. And I have asked her to update you from time to time. She reports that you are extremely knowledgeable about developments in the research on CFS, so that I hope you will keep in touch with us as well. " In his letter, Obama said he had asked for a report on NIH funding of CFS research, and he was told that last year the NIH spent $6.1 million on CFS research, which represented a 31 percent increase over the level of spending when he took office. The CFS community - an estimated 1 million people with the disease in the United States - has long felt slighted by government, both by the NIH and the Centers for Disease Control (CDC), and ignored in the media. The community notes that spending to this point in time has been minimal by Washington standards -- and even by the NIH's own standards. Multiple Sclerosis (MS), a disease with half the sufferers, gets about $100 million in research funding. CFS sufferers are condemned to lives of pain, debilitating fatigue and sometimes total collapse, resulting in being bedridden for years. Suicide is frequent. Accurate diagnosis is a long and difficult process, involving many tests to eliminate other causes, or what doctors refer to as " wastebasket " analysis. The politics of disease are like all politics: size matters. Money is important, media access counts, and it helps to have a celebrity to front your cause. AIDS had and MS had Jerry . On all these fronts, CFS comes up short. Also it does not have a national voice, as cancer, diabetes, heart, lung and many other afflictions do. The name itself, Chronic Fatigue Syndrome, sticks in the craw of the sufferers. Patient advocates -- a dedicated but scattered band of sufferers and victims' family members, like -- hate the name. It was conferred on the disease by the CDC, and is the official name in the United States. In the rest of the world it is called by its old name, Myalgic Encephalomyelitis, and the community much prefers that name. Obama used both names in his letter to . The complaint, which I have heard without exception from patients and their families, is that the name CFS trivializes a terrible disease and brings with it an undeserved stigma: a suggestion that the victims are not really sick, but malingering. Another deeply felt anger among patients worldwide has been a consistent attempt by psychiatrists to claim the disease as psychosomatic, despite palpable physical debilitation. In fact, it is a disease of the immune system, according to doctors who have made a career of treating it. told me she was ecstatic about the president's letter and her communication with DeParle. " It is all that I had hoped for, " she said. Obama has some new friends. ```` See also: 1) where asked President Obama for help. She said: " Mr. President, my name is (ph). And I want to thank you for returning science to the national priority. And I need to ask for some help for my family. My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis. And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness. And 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 that. " 2) ME patient sick for 25 years hopes President Obama's promise to look into CFS materialises. : a thank you to the President of the United States 3) Time for Action Campaign Bob http://on.fb.me/Nzxrlw " Time for Action " Campaign before CFSAC'S " Speak Up for ME " !!! For ME/CFS Patients, Their Families and Friends Contact: bobmiller42@... To All ME/CFS Patients: From and Family As you know President Obama made a promise to all ME/CFS patients and their families at a Town Hall meeting in Reno last week. He stated: " Now, I will confess to you that, although I've heard of chronic fatigue syndrome, I don't have expertise in it. But based on the story that you told me, ( )what I promise I will do when I get back is I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment. Okay? " So, it's time to let President Obama know we appreciate his personal attention and promise by sending him a brief thank you for looking into our ignored illness. The more he hears from us, the more he will understand the gravity of our situation. We ask patients, their families, friends and loved ones to email President Obama at the link below. It is a Fill In Page which makes it easy. In the Subject line: Select Health Care. Please make your letter brief and to the point. I have provided an example below along with the link: http://www.whitehouse.gov/contact Dear Mr. President, I wish to thank you for your promise to Chronic Fatigue Syndrome (ME/CFS) patients at the recent Reno Town Hall Meeting, where you said that you will ask NIH to explain what the institute is doing to research our illness and encourage them to do more. I believe that scientific research can restore my life. Sincerely, xxxxx Quote Link to comment Share on other sites More sharing options...
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