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
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

15
Jun
During The Chronic Fatigue Syndrome Advisory Committee meeting this week, ME/CFS experts,The International Association of Chronic Fatigue Syndrome Myaligic Encephalomyelitis (IACFSME)presented A Primer For Clinical Practioners. Take a look.  
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf 


During The Chronic Fatigue Syndrome Advisory Committee meeting this week, ME/CFS experts,The International Association of Chronic Fatigue Syndrome Myaligic Encephalomyelitis (IACFSME)presented A Primer For Clinical Practioners. Take a look.  

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/

30
Apr

May 12th is International NeuroImmune Invisible Disease Awareness Day!

May 12th dot org want you to email them your story, photographs, poems, art, video’s to be put up on the May12thDotOrg YouTube channel 

Contribute your story now to may12globalaction@gmail.com 

We want to be swamped with stories!

Pay It Forward For ME !