1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 17, 2012.

  1. Firestormm

    Firestormm Senior Member

    Messages:
    5,822
    Likes:
    5,953
    Cornwall England
    He did. And so would I :)

  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    It did make me happy to see the term "ME/CFS" above the President's signature. WE PATIENTS are changing not only the political climate (hopefully) around ME but also the nomenclature of the disease. Please, everyone keep using ME not "CFS" and eventually we will see the disease being referred to by its proper name by everyone, including CDC, at some point. Every time you say "ME" brings that day closer!
  3. snowathlete

    snowathlete

    Messages:
    2,019
    Likes:
    2,054
    UK
    Impressive, frankly.
  4. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    403
    Upstate SC, USA
    I'm impressed that it was followed through on. I really anticipate seeing what the impact of this really does. Alot I hope!!!!!
  5. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    531
    Well, as an American, I think our greatest hope of getting funding/ recognition for this illness is to make it a nonpartisan issue; whoever the President turns out to be, he will still need the support of Congress and, less likely for us, the Supreme Court to get his agenda heard and passed. After all, ME/CFS doesn't check to see if you are Democratic, Republican, Independent, Socialist, Libertarian, Freedom and Justice, or part of the Green (or any other) party before it decides to take over your life. If we don't even try to inform other parties of this illness and the impact on our lives, we have less recourse when they try to cut funding for programs that are important to us.

    I happen to live in a solidly Democratic state and my Congressional reps have mostly voted the way I would want them to vote in regards to health issues (I have also written and spoken to my local legislative office about ME/CFS) but if people happen to live in an area were their Congressperson is not supporting the issues they want to see supported, they should contact their Congressperson.

    And this presidential election looks like a close one for both Republicans and Democrats.
    WillowJ, alex3619, ixchelkali and 2 others like this.
  6. Michelle

    Michelle Decennial ME/CFS patient

    Messages:
    104
    Likes:
    10
    Portland, OR
    Have to agree with JT1024 on this one. All I could think of as I read the letter was SHOW ME THE MONEY! While it's a bit impressive that he really did follow up on Courtney's question (albeit a year later when the election campaign was in full gear -- is he so desperate he's got to reach out for the ME/CFS vote? Ah to be the courted swing vote in this election!), I saw nothing in the letter that suggests a change from the status quo. Indeed I saw no appreciation for or reference to how little NIH spends on ME/CFS vis a vis other illnesses, or even compared to the cost to the national economy per Courtney's original question to him.

    That said, thousands of patients flooding the White House inbox to underscore the funding discrepancy and our desperation couldn't hurt. Who knows? Maybe we could get Obama and Romney falling over themselves to get our vote. ;-) (One can dream...)

    dannybex: You can "right-click" on a MacBook by tapping two fingers on the trackpad. I'm not sure how you do it with a mouse but would think that if you go to System Preferences and click on "mouse", it might have something about "secondary tap" as "right-clicking" is referred to on my MacBook's trackpad tutorial.

    (Ugh. I can't believe it's taken me an hour to type this.)
  7. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    53
    Wetumpka Alabama
    I love it!
  8. ThatBloke

    ThatBloke

    Messages:
    14
    Likes:
    13
    This is wonderful news! Can't get much higher recognition than from the President of the USA.
    The benefit will not only be in the increased funding for research etc, but the increased recognition of MECFS.

    A quick scan of the net reveals that the mainstream media such as newspapers and TV have not yet reported this story.

    Now is the time for all MECFS organizations and individuals to be pumping out press releases and emails to point this story out to the media so the word gets out. Once the story is more than a few days old, they will not be interested in it.

    Even local newspapers etc will be interested in this story if they can have contact with a local MECFS sufferer to "hang the story on", so get in touch with your local paper or TV station now to let them know how much this means.

    The more this promise is out there in wider public view, the more pressure there is on the President, NIH and CDC to follow through on it.
    Sasha likes this.
  9. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    God Bless President Obama!

    ❤OBAMA❤

    4 MORE YEARS!!!

    :)
  10. MishMash

    MishMash *****

    Messages:
    446
    Likes:
    479
    Georgia
    The last time I smoked marijuana was about 30 years ago in college. I tried it about ten times total. I mostly felt paranoia, and didn't get any of the supposed euphoria or sleepiness other folks talked about.

    But from what I've read, they have developed strains of cannabis that can treat all kinds of symptoms. Some of them work very well for insomnia and pain. At this point I would definitely be interested, if it were legal.

    But of course, our President, the ex-pot smoker extraordinaire, feels it in his authority to throw those in jail who did exactly as he did when he was young. If President Obama would fulfill has campaign promise of butting out of our lives, and stop being nanny in chief, I would feel like my vote wasn't being wasted.
  11. Firestormm

    Firestormm Senior Member

    Messages:
    5,822
    Likes:
    5,953
    Cornwall England
    Soooo.... you're not believing el presidente's conviction then Mish? Or you think we should all smoke pot? :)
  12. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    am I missing something read obama me/cfs letter cannot see where he says to elevate the priority of ME. ?
  13. Firestormm

    Firestormm Senior Member

    Messages:
    5,822
    Likes:
    5,953
    Cornwall England
    It was referred to as a separate communication Polly. See my post above #61 and Cort's opening remarks.
  14. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,020
    N. California
  15. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,777
  16. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,964
    Likes:
    3,020
    N. California
    warriorseekspeace likes this.
  17. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    506
    Los Angeles, CA
    Further notes: if you've downloaded the pdf and can't read it because it's sideways, go to View--->Rotate View--->Clockwise in Adobe Reader.

    Is there a reason why this letter, dated back in July, is being made public at this particular time? A Friday afternoon news release is notoriously the time when a story is least likely to get covered. I thought that this was a deliberate Friday news dump until I realized it wasn't an official news release from the WH, just the Millers' letter being made public.
    mezombie likes this.
  18. Anne

    Anne

    Messages:
    83
    Likes:
    50
    I have this West Wing image in my head of the President's staff walking along corridors talking really fast - about ME/CFS...! :)

    So who would White House Chief of Staff, Nancy-Ann DeParle, be? Josh??
  19. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    I think she's a Deputy CoS - I envision her as "CJ", obviously!
  20. Eliza

    Eliza

    Messages:
    11
    Likes:
    27
    Belgium
    Sent an email a few minutes ago (I'm from Belgium).
    If I were a US citizen, I would have voted for him from the beginning and would have kept voting for him. He's genuin. And he proves it by keeping his promiss to Mrs Miller. And I assume he has to make promisses every day to many many people ...
    So whatever this might change or might not change regarding NIH policy and funding for CFS research, he gave us a little ray of hope again ... and that deserves a bit of gratitude.
    Now keeping our fingers crossed that NIH, CDC etc. got a wake-up call ... finally ...
    This is not only important for US patients but for patients all over the world.
    Merry and Sasha like this.

See more popular forum discussions.

Share This Page