CFS’S FRESH HOPE 

On March 4, 1933 at the height of the hell of worldwide depression much more severe than this one President Franklin D. Roosevelt in his inaugural inspired our discouraged nation with a remarkable infusion of hope with his admonition “We have nothing to fear but fear itself.” For the one million innocent Americans and their loved ones who daily endure the hell of CFS President Barack Obama has given fresh hope. In a detailed July 26 letter in response to a campaign query by CFS sufferer Robert Miller’s wife Courtney he reported what he has learned about CFS .His letter outlined progress to date and outlines his administration’s CFS plans for a diagnosis and cure. Above all he has shown continuing interest and invites dialogue.

Our CFS fight for a cure seems agonizingly slows. This is particularly the case for those who suffered through the early days of “Yuppie Flu” ridicule and derision and medical indifference. Historically we have seen cures for polio and smallpox and more recently remarkable progress in fighting AIDS. We can find hope in Thomas Edison’s answer to critics who derided his failure in testing 10,000 materials for a filament for his light bulb. He responded that on the contrary to failure he had the success of proving what would not work.

We can be inspired by modern technology and instant communication that constantly marshals the scientists of the entire world to find cures. Recently there has been world-wide attention to a tentative finding of some evidence that mouse leukemia retrovirus impacted CFS. NIH tested blood samples of CFS sufferers and a control group and found no evidence of the virus.
Again we salute Kimberly Mc Cleary and the CFS Association who were the pioneers in CFS research and for more than 20 years have been a research lighthouse. It is my understanding that they are funding studies in related fields to determine if some of the findings might lead to new paths to CFS success.

As President Obama’s letter points out our nation faces great financial challenges. We need to cut expenditures. However care must be given to distinguish the difference between expenditure and an investment. For example at the end of World War II Congress passed legislation offering sixteen million veterans a free college education. The consensus now is that this was not expenditure but was an investment that produced enormous national return. . Imagine the return if research expenditure now found a cure for CFS that freed 1,000,000 Americans to return to the full time work force.

We know that hope beats fear always. .At your last meeting your chairman had it right.

“You have CFS now but that does not mean you will always have it! “

Rev. Bernard F. Hillenbrand

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MITT ROMNEY’S FIRST CHOICE 

Mitt Romney the Republican candidate for President of the United States comes from a very distinguished American family. In the past five years he has for the second time invested his time and money in runs to become President. To win the nomination he has been forced to cater to the far right which dominates the nominating process. He has promised to free our country from President Obama’s socialism and to restore America to its previous greatness.

He has made his first critical decision. . With respect to this choice Governor Romney has repeatedly said that his first consideration was that the person he chooses would have all the credentials for being President of the United States. . Like former Republic Candidate Senator John Mc Cain who selected Governor Sarah Palin to fire up his tea party followers many believe that Romney for the same reason has chosen Congressman Paul Ryan.

The public and many in the press have come to the false belief that a vice president has almost no power and is irrelevant except for narrow political purposes in the political campaign. Older Americans in their lifetime they have seeing one president die; a second president assassinated in office; a third president forced to resign. These former Vice President's became Presidents Harry S. Truman; Lyndon B. Johnson and Gerald Ford. Each of these men proved to have the qualification for President of the United States.

If Mitt Rob becomes president and dies in office how likely it is that Congressman Paul Ryan based upon his record would measure up to these men? In seven congressional terms he has become a voice for the Republican ultraconservative right in the United States House of Representatives. He is a firm believer in tax relief for the very rich and believes that Social Secirity and Medicare should be privatized and ObamaCare should be abolished. He has spent the last four years as a leader and spokesman for the conservative Republicans sole objective which was to defeat President. Barack Obama. He has supported shutting down the federal government to control he national debt which has contributed to the downgrade of our US credit.
Congressman Ryan was a leader in the successful Republican effort to ignore the rights of states and passed national legislation to outlaw same sex marriages.

Our founding fathers lead by Thomas Jefferson from the very beginning constructed a solid wall to separate Church and State. Congressman Ryan (as does his Republic Platform) supports a church supported constitutional amendment to abolish all abortion with no exceptions for rape, incest or life of the mother. Mitt Romney has yet to give the details of his tax returns or any specifies of how he would address our problems and return us to our former greatness. All we have so far is his choice of the man who would succeed him if he is elected and dies in office. Many believe this is not a promising start.

Rev Bernard F. Hillenbrand

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President Obama “has thrown in on our side”....  




(According to the following press release from Bob and Courtney Miller which appeared first on Phoenix Rising (http://PhoenixRising.me), President Obama has shared positive news with them on CFS research in a recent letter).

_________________

Aug 17, 2012:
In an unprecedented step, President Obama has asked the National Institutes of Health and the Department of Health and Human Services to elevate Chronic Fatigue Syndrome in priority, assigning his Deputy Chief of Staff to follow their efforts.

When President Obama promised Courtney Miller to “see if they could do more” for CFS research at a Reno Town Hall meeting last year, he was the first U.S. President to say the words Chronic Fatigue Syndrome. Now he has lived up to his promise, becoming the first President ever to ask the nation’s health agencies to elevate the priority of CFS!

Thank you, President Obama!

In a July 25, 2012 letter addressed to Mrs. Miller, President Obama describes a report given him by Dr. Francis Collins, Director of the National Institutes of Health. The important part of the letter is the last paragraph which speaks to the future:
He has asked his Deputy Chief of Staff for Policy, Nancy-Ann DeParle, to “stay in touch with Dr. Collins at NIH and Dr. Koh at HHS about my interest in their efforts on CFS.”
Mrs. Miller’s communications with the White House confirm that the President’s wish to have CFS elevated in priority in the Department of Health and NIH has been conveyed at the highest level.

“President Obama kept his promise in the most important way he can for CFS/ME patients,” said Courtney Miller, “by leading a stronger federal commitment to CFS/ME research and a better quality of life for patients. CFS is a health crisis for more than 1 million Americans, and President Obama has thrown in on our side!”

Thanking President Obama

We all need to thank President Obama. It is important that the President know that many patients and their families are affected by CFS and that we are grateful for his efforts. We have made it easy for patients and friends to email the White House Office of Public Engagement, with the following model email.

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PRESIDENT JIMMY CARTER 

As he left the Presidency President Carter’s popularity was at a low mostly because the American humiliation of having Iran imprisoned hundreds of Americans for more than a year. That is changing because of historic developments and his remarkable post-presidency work in constructing housing for the poor: for monitoring elections worldwide and for his steady contribution to religious understanding and to world peace..

During his administration President Carter supported many of NACo’s policy positions .Prior to his election as Governor of Georgia he was extremely active in encouraging economic development in that state. For that reason he was personally better acquainted with the work of wife Aliceann Wohlbruck who was then Executive Director of the National Association of Development Organizations (NADO). He was an hit with her members when as President he addressed her annual meeting. I have been inspired by the half dozen or more books he has written on the Christian faith and its application to world affairs.

I became especially close to this administration through his presidential aide Stu Eizsenstadt. He was the President’s Domestic Policy Adviser and Executive Director of the Policy Staff. Our whole NACo staff had instant access to the White House on dozens of policy questions. He is a remarkable human as is his wife Fran. After Carter’s term he went on to a great law career and held many high level government post. He is also world famous for his successful efforts to restore to the heirs some the huge wealth the Nazi’s stole from the Jewish people during the Holocaust.

It was a personal high when Stew arranged for me to attend the September 17 1978 White House lawn ceremony to celebrate the Camp David Accords. These agreements lead to a Egypt Israel peace treaty. It was a joyous moment when a smiling President Carter watched as Pres. Anwar Sadat of Egypt and Israel’s Prim Minister Menachem Begin (who later shared a Noel Peace prize) shuck hands and launched an understanding that has to this day brought peace between these two often hostile countries.

.President Carter also helped us plan and implement a county official’s tour of Communist Russian then the Union of Soviet Socialist Republics (USSR) He arranged briefings for us at the state department and at our departure met in person with me and the 182 participants in and emotional send off. NACo chartered a British plan for a two week tour of the Communists Soviet Union and nearby Baltic Nations.



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SYRACUSE’S MODERN FIRE ALARM SYSTEM 

My first significant public administration accomplishment was the first U.S. installation of a completely telephone operated fire alarm system for the City of Syracuse. In 1954 I was Deputy Director of the City’s Bureau of Municipal Research. Aliceann held the same position 10 years later.. Laurence J. O'Toole a former newspaper reporter and later a close friend was the Director.

The old telegraph system consisted of a post on the corner with a red manually operated alarm box. With a tiny hammer the glass was broken and when the lever was pulled the box number was telegraphed to City Hall central station and to all 20 Fire Stations. . If the box was 23 for example it would telegraph on a paper ticker two a pause and then three holes.. Each station had a man standing by to determine the Company was to respond to that box location. There were enormous disadvantages. First off and could only handle fire related emergencies and the box location did not tell the location of the fire. All of the apparatus had to respond to the box not to the fire. One of the worst problems was the temptation for mischief where people would pull the lever and create a great number of very expensive false alarms. Actually the system totally collapsed during Hurricane Hazel which was remarkable for coming so far north and inland with such ferocity. .

While in the Army I had seen on telephone poles small round mental boxes connected by phone to a central dispatch agency. I got in contact with Paul Combs Deputy Fire Chief and a Paul Johnson representative from the New York Bell telephone system and we began a two-year effort to create a telephone alarm system. Chief Combs was remarkable in his encyclopedic understanding of the fire service. Together we spent thousands of hours night and day working out every detail. We faced bitter opposition from Game Well Company which marketed the old system. For example they had a stable of retired chiefs of fire departments who warned that the present system was the best and that the new system would cause loss of life and increase of fire insurance premiums. We also faced bitter resentment from the often partially disabled fireman who would lose their relatively cushy jobs operating the telegraph system. . They protested that the rules of the Civil Service Commission protected their jobs. We discovered that another community in Florida was experimenting with the telephone system. We approach Fire Chief Tom Connolly and urged him to go to Florida (where he had a daughter) and review their approach. He came back as our critical supporter...

We successfully installed a modern telephone alarm system that could report emergencies by voice to central dispatch. The appropriate fire, police, ambulance and other responders were then dispatched to exact locations... False alarms were almost entirely eliminated. In effect we installed at street level the preview of today’s Telephone 911 System.

This was very rewarding particularly since I formed such a strong bond with Paul Combs. We champion many other progressive ideas. As an example Paul’s idea to smother of fire by making only a small opening in the window glass and spraying it with water soaked with detergent to cut the oxygen and choke off the flames. This idea is now these many years later being experimented with by other fire departments which are notably super conservative. The obsolete technique is to smash out the windows to ventilate the fire and squirt the resulting flames. A 3 inch fire hose at full blast will blow out walls and destroy everything in its path.
It was a heartbreaker when two years after I left to come to Washington Chief Combs passed away. This system has saved many lives and most of the credit goes to my dedicated friend.

There were other great friends. Mayor Thomas Corcoran, who hired me, was the first Democratic Mayor in usually Republican Syracuse. He had a broad education in a most unusual way. He had a small printing company and a contracted with Syracuse University to print professional papers. He had developed the skill of absorbing the content while his fingers mechanically set type. He became my great friend after an embarrassing job interview. At the meeting with him and Council President Alfred Haige there was an accident. As I accepted the invitation to sit down my pants ripped open and my very white knee popped out. With this humorous start the Mayor shared a story. He told me the man that I passed outside his office was his 90 year old father. He was born in Ireland and came to America by indenture. He had applied for a job at the construction of this City Hall and was turned down because at that time there was strong Anti-Irish prejudice. In one generation his son was elected mayor. He said this is the American story. He traced Syracuse immigration he marked by changing names of city streets and parks. First to come were the Germans who sponsored Schiller Park. They were followed by Italians, Irish Polish and others. He predicted that the next group would be African American. He was correct. He could not however have anticipated the newest arrivals. They are Vietnamese refugees. Butternut Street home in my youth was almost totally Italian as were my playmates in school and church. That street is now referred to as Ho CHI Min Trail.

At the meeting it was decided that in view of the fact that my annual salary in my previous Wisconsin position was $ 4,900 my new Deputy Director position should show a salary step up for a native Syracusan. They added an extra $100.

Bernard F Hillenbrand

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