20
Dec
Hello everyone! Happy Thursday. Please tune into the FDA advisory meeting starting now. They will be talking about Ampligen. This is personal for myself and Lizzie. We need more treatment options. We support more treatment options. FYI…Lizzie has been showing some improvement with IVIG infusion therapy but nothing spectacular! She’s been receiving IVIG monthly since her 18th birthday , August 29, 2012.Please check out the meeting. Show support. Live now!
https://collaboration.fda.gov/aac122012/?launcher=false





Connect Pro Meeting Login
collaboration.fda.gov
Hello everyone! Happy Thursday. Please tune into the FDA advisory meeting starting now. They will be talking about Ampligen. This is personal for myself and Lizzie. We need more treatment options. We support more treatment options. FYI…Lizzie has been showing some improvement with IVIG infusion therapy but nothing spectacular! She’s been receiving IVIG monthly since her 18th birthday , August 29, 2012.
Please check out the meeting. Show support. Live now!

https://collaboration.fda.gov/aac122012/?launcher=false
Connect Pro Meeting Login
collaboration.fda.gov
5
Nov

Why it’s Important that Obama Wins 

I want to remind people especially those suffering from ME/CFS, HOW IMPORTANT IT IS that Obama wins the election tomorrow. 

Hopefully you know the story of how Courtney Miller asked the President last year in Reno to help her husband Bob Miller (who suffers from Chronic Fatigue Syndrome.) 

Here is the video of Courtney asking the President for help:

About a year later the President responded to Courtney Miller’s request. 

Here is a link to that letter: http://phoenixrising.me/wp-content/uploads/President-Obama-Letter-on-CFS.pdf

Do you see how huge this is? I’m not very good at explaining things, but Obama cares about us. He cares about the funding of this terrible disease. He even refer to CFS as Myagic Encephalomyelitis in his letter! That in itself is huge! It’s a step in getting the name changed! ProHealth’s Rich Carson explaining the importance very well in his letter to the ME/CFS patient.

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. 

There you go people! Vote Obama tomorrow if you want to see more funding in the CFS community! I know I’m voting for him! 

(Source: prohealth.com)

18
Aug

The “Obama Promise” Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome
by CORT on AUGUST 17, 2012


President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome

Bob and Courtney Miller’s effort to engage President Obama  on behalf of Chronic Fatigue Syndrome  patients began in a Town Hall meeting in Reno last year. At that meeting President Obama promised to look into the situation and report back and, now, through his Deputy Chief of Staff, Nancy-Ann DeParle, he has.
The top aid to the White House Chief of Staff,  Nancy-Ann DeParle has a long track record with health care; as Director of Health Care Financing for the Clinton administration she helped administer the Medicare and Medicaid  programs and then was director of the White House Office of Health Reform for President Obama.  A Phi beta kappa and Rhodes scholar, Mrs Deparle was recently included on The New Republic’s list of Washington’s most powerful and least famous people.
 Mrs. DeParle told Courtney that President Obama had never asked her to investigate a specific disorder before. No promises were given regarding funding but President Obama’s desire to elevate the priority Chronic Fatigue Syndrome receives at the NIH (in a separate communication to Courtney) was promising.
Read the letter from President Obama to Courtney here.
From Bob and Courtney Miller
“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 confirms 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!”
Source: Phoenix Rising ME/CFS website: http://phoenixrising.me

The “Obama Promise” Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

by CORT on AUGUST 17, 2012


President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome

Bob and Courtney Miller’s effort to engage President Obama  on behalf of Chronic Fatigue Syndrome  patients began in a Town Hall meeting in Reno last year. At that meeting President Obama promised to look into the situation and report back and, now, through his Deputy Chief of Staff, Nancy-Ann DeParle, he has.

The top aid to the White House Chief of Staff,  Nancy-Ann DeParle has a long track record with health care; as Director of Health Care Financing for the Clinton administration she helped administer the Medicare and Medicaid  programs and then was director of the White House Office of Health Reform for President Obama.  A Phi beta kappa and Rhodes scholar, Mrs Deparle was recently included on The New Republic’s list of Washington’s most powerful and least famous people.

 Mrs. DeParle told Courtney that President Obama had never asked her to investigate a specific disorder before. No promises were given regarding funding but President Obama’s desire to elevate the priority Chronic Fatigue Syndrome receives at the NIH (in a separate communication to Courtney) was promising.

From Bob and Courtney Miller

“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 confirms 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!”

Source: Phoenix Rising ME/CFS website: http://phoenixrising.me

2
Jul
July 2nd, 2012
 
President Obama
1600 Pennsylvania Ave NW
Washington, DC 20500
 
Dear President Obama,
I am writing to you in hopes of informing you of an epidemic sweeping our country. Yes, an epidemic. Chronic Fatigue Syndrome also known as ME Myalgic Encephalomyelitis. Chronic Fatigue Syndrome is a debilitating illness that plagues an estimated 1 million Americans. The name itself does not give the illness justice. It may sound minor, but the consequences of being struck by CFS are intense. Not only on the health of the American people, but the economy as well.
 
Regarding health, ME/CFS causes profound exhaustion and lack of stamina that is not improved by bed rest. Fatigue is not the only symptom; sufferers also experience neurological symptoms such as poor concentration and memory. Many experience flu - like symptoms such as sinus issues, enlarged lymph nodes and painful joints. The prevalence of CFS is widespread. It can affect any age, any gender, and any race. A cause has not been determined, nor has a cure. 
 
Unfortunately, CFS has negatively affected the economy. Researchers at DePaul University estimate that CFS costs the U.S economy $17-24 billion. That is a huge amount of money, but it is not shocking considering the circumstances sufferers have to cope with. Many CFS sufferers do not have much of a social life, or receive social security benefits. CFS affects your ability to live a normal prosperous life! 
 
We should fund research to find a cause and cure! Sufferers are plagued by a judgmental society that constantly needs to be on the go. ME/CFS sufferers are not lazy, malignant citizens. They deserve a chance to live the lives they were born to live. If we find a cause and cure, ME/ CFS sufferers can live to their full potential, and contribute to the economy.

President Obama, I invite you to meet with me to discuss what we can to do end the suffering of Citizens of the USA with ME/CFS.  In a speech in 2008 you said,“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change we seek.”  The time is now. I and  millions of citizens with ME/CFS are the change,you are the facilitator of change. I am asking you to investigate and to be open to the possibility that maybe somewhere along the line our governmental agencies failed to do a thorough investigation with the initial outbreaks of  MECFS in Lake Tahoe and Lyndonville, New York.President Obama, you owe it to us to give us a second opinion and revisit the possibility the CDC did not do their job. It’s time to get it right.MECFS patients need the CDC to stop playing games and give this disease a proper name officially such as Myalgic Encephalomyelitis. I have Myalgic Encephalomyelitis not Chronic Fatigue Syndrome.
I know you can make an emergency exception and allocate much more money for research, more treatment options and eventually a cure. Anyone can get this disease and it can strike anytime. What if Sasha and Malia came down with this dreaded debilitating disease? What would you do if there was no treatment because there are no guideline physicians can follow. Some Physicians I have encountered use that as an excuse not to treat you.


Anyone can catch a virus. A lot of teenagers catch mononucleosis like I did. It’s almost like a rite of passage. However, more and more teenagers are not recovering from the virus spending months maybe years in bed. These teenagers are our future leaders. An alarming amount are committing suicide due to the lack of treatment. They lose hope. They are ostracized by society, the medical community, friends and even family.

The time is now. You need to pay attention to what is happening. You have the power to make positive change. This is an epidemic that will continue to grow rapidly unless you do something.

My name is Elizabeth Fall. I’m 17 and I have had Myalgic Encephalomyelitis for two years. I came down with mononucleosis on my 16th birthday and have not recovered. I was a vibrant and active person before becoming ill.
I’ll be 18 in late August and I will be voting in this upcoming election. There are millions of U.S.citizens watching you to see what you do to represent the best interests of our society.

Do the right thing Mr. President.

 Please consider this letter.

 Sincerely,
 Elizabeth Fall
Atlanta, Georgia

July 2nd, 2012

 

President Obama

1600 Pennsylvania Ave NW

Washington, DC 20500

 

Dear President Obama,

I am writing to you in hopes of informing you of an epidemic sweeping our country. Yes, an epidemic. Chronic Fatigue Syndrome also known as ME Myalgic Encephalomyelitis. Chronic Fatigue Syndrome is a debilitating illness that plagues an estimated 1 million Americans. The name itself does not give the illness justice. It may sound minor, but the consequences of being struck by CFS are intense. Not only on the health of the American people, but the economy as well.

 

Regarding health, ME/CFS causes profound exhaustion and lack of stamina that is not improved by bed rest. Fatigue is not the only symptom; sufferers also experience neurological symptoms such as poor concentration and memory. Many experience flu - like symptoms such as sinus issues, enlarged lymph nodes and painful joints. The prevalence of CFS is widespread. It can affect any age, any gender, and any race. A cause has not been determined, nor has a cure.

 

Unfortunately, CFS has negatively affected the economy. Researchers at DePaul University estimate that CFS costs the U.S economy $17-24 billion. That is a huge amount of money, but it is not shocking considering the circumstances sufferers have to cope with. Many CFS sufferers do not have much of a social life, or receive social security benefits. CFS affects your ability to live a normal prosperous life!

 

We should fund research to find a cause and cure! Sufferers are plagued by a judgmental society that constantly needs to be on the go. ME/CFS sufferers are not lazy, malignant citizens. They deserve a chance to live the lives they were born to live. If we find a cause and cure, ME/ CFS sufferers can live to their full potential, and contribute to the economy.


President Obama, I invite you to meet with me to discuss what we can to do end the suffering of Citizens of the USA with ME/CFS.  In a speech in 2008 you said,“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change we seek.”  The time is now. I and  millions of citizens with ME/CFS are the change,you are the facilitator of change. I am asking you to investigate and to be open to the possibility that maybe somewhere along the line our governmental agencies failed to do a thorough investigation with the initial outbreaks of  MECFS in Lake Tahoe and Lyndonville, New York.President Obama, you owe it to us to give us a second opinion and revisit the possibility the CDC did not do their job. It’s time to get it right.MECFS patients need the CDC to stop playing games and give this disease a proper name officially such as Myalgic Encephalomyelitis. I have Myalgic Encephalomyelitis not Chronic Fatigue Syndrome.

I know you can make an emergency exception and allocate much more money for research, more treatment options and eventually a cure. Anyone can get this disease and it can strike anytime. What if Sasha and Malia came down with this dreaded debilitating disease? What would you do if there was no treatment because there are no guideline physicians can follow. Some Physicians I have encountered use that as an excuse not to treat you.



Anyone can catch a virus. A lot of teenagers catch mononucleosis like I did. It’s almost like a rite of passage. However, more and more teenagers are not recovering from the virus spending months maybe years in bed. These teenagers are our future leaders. An alarming amount are committing suicide due to the lack of treatment. They lose hope. They are ostracized by society, the medical community, friends and even family.


The time is now. You need to pay attention to what is happening. You have the power to make positive change. This is an epidemic that will continue to grow rapidly unless you do something.


My name is Elizabeth Fall. I’m 17 and I have had Myalgic Encephalomyelitis for two years. I came down with mononucleosis on my 16th birthday and have not recovered. I was a vibrant and active person before becoming ill.

I’ll be 18 in late August and I will be voting in this upcoming election. There are millions of U.S.citizens watching you to see what you do to represent the best interests of our society.


Do the right thing Mr. President.


 Please consider this letter.


 Sincerely,

 Elizabeth Fall

Atlanta, Georgia

13
Jun
Tune in to The CFSAC Meeting. Live Streaming Video Today!

WHEN:

9:00 am – 5:00 pm EST
Wednesday and Thursday, June 13 - 14, 2012

WHO:
Join the Chronic Fatigue Syndrome Advisory Committee (CFSAC) as they discuss the current issues of chronic fatigue syndrome. Dr. Howard K. Koh, Assistant Secretary for Health, will administer the oath of office to four new committee members on June 13, 2012.

Guest speakers will discuss childhood chronic fatigue syndrome and include Peter C. Rowe, M.D. Professor of Pediatrics at the Johns Hopkins Children’s Center and Gail Houle PhD. Associate Division Director, Office of Special Education Programs, Department of Education.

LiveStream Link  http://www.hhs.gov/live/

Learn more at http://www.hhs.gov/advcomcfs/