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

3
Aug

Dr. Susan Levine 

So everyone! I have a lot to update you all on! I made the trip up from Georgia to stay in South Jersey with my Grandma so I could go see Dr. Levine in New York City. Today I went and saw her and it could not have gone better!

She looked through my previous blood work and noted that my Epstein Barr virus titers were high. My HHV 6 levels are also high. So we discussed what lead to my diagnosis, you know all that general info and then we talked about treatments! She wrote me scripts for low dose Naltrexone, Valcyte, supplemental IV’s, and I forgot the last thing. Haha.

But anyway, I knew the EBV was an issue but I didn’t really know too much about the HHV 6 until I looked it up! Apparently…

HHV-6 can persist in the brain tissue long after primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood.  Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests. In other words, even though there is no DNA for HHV-6 (or other herpesviruses such as EBV) in the plasma, it is possible that one of more of these viruses are in fact smoldering in the tissues and throwing off inflammatory cytokines.


So I thought that was interesting! 

Oh and I got a photo with Dr. Levine because I’m weird like that. She’s awesome though, and if you have CFS/ME and have the chance to see her, I’d definitely recommend her. She knows her stuff. 

Excuse how incredibly flushed and puffy my face is. Also no makeup, because who wears makeup to the doctor? Yeah. 

Anyway, that’s how that all went. I’ll keep everyone up to date on how I do on the valcyte, naltrexone, and the nutritional IV’s!

(Source: hhv-6foundation.org)

12
Jun

CFSAC MEETING IS BEING LIVESTREAMED 

Hey everyone! The CFSAC meeting is being livestreamed! Here is more information regarding all of that. (: 

http://www.prohealth.com/library/showarticle.cfm?libid=17037

URL FOR THE LIVE VIDEO FEED: The streaming video will be offered at http://www.hhs.gov/live. You can check there on Tuesday to download the latest version of Adobe Flash Player and test it out. The more viewers, the more evidence for HHS that the investment in streaming video service is of value to us.(Audio will be available at            1-888-677-1834      . Passcode CFSAC 2012.) Reportedly, HHS will post videos of the event online later.

2
May

May 12th is right around the corner!!! 

Hey ME/CFSers! (Yeah, I don’t know how to address all of you! xD Sorry! )

May 12th isn’t too faraway now! I know lately this blog has been a bit drab and boring with the weird 90s videos that my mother has been posting. (They really are helpful, I promise!) But hey! Get out there on May 12th!

The internet is our oyster people!

  • Post a FB banner on May 12th like this one:

  • Tweet informative ME/CFS videos.
  • Pin ME/CFS related things to a board on Pinterest.
  • Post on Tumblr!

Just get the word out somehow! We need more recognition of this terrible disease if we want to get closer to a cure.