1. Patients launch a $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!
Dysautonomia and POTS: An Overview
Andrew Gladman considers the importance of dysautonomia and several of its component parts -- neurally mediated hypotension, inappropriate sinus tachycardia and postural orthostatic tachycardia syndrome -- all recognised as problematic comorbidities by ME/CFS patients ...
Discuss the article on the Forums.

Success! FDA Commits to Stakeholder Meeting...

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 2, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    643
    Likes:
    914
    View the Post on the Blog
    Merry, Snow Leopard, camas and 2 others like this.
  2. Denise

    Denise Senior Member

    Messages:
    121
    Likes:
    148
    Thank you to everyone who added their voice and helped us get this meeting!!!

    And many thanks to everyone who is working on meting plans and agenda!

    Let's keep working together so that we can accomplish more things like this!
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    423
    Raleigh, NC
    This has the potential to be a big (big) breakthrough for ME/CFS. With Ampligen (still) in the pipeline, studies beginning in Rituximab and the CAA's Biovista project promising new drug possibility, the idea of a streamlined approach to FDA drug approval is very exciting....Congratulations to everybody who lent their time and effort for this.
    PWCalvin likes this.
  4. Nielk

    Nielk

    Messages:
    4,827
    Likes:
    3,758
    Queens, NY
    This is a great example where we can see the direct effect of pulling our resources together to achieve success.
    I congratulate everyone involved for a job well done.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,717
    Likes:
    652
    Hampton, NH
    I waxed and waned on this advocacy.

    GG

    PS Hopefully this leads to something fruitful.
  6. Bob

    Bob

    Messages:
    6,319
    Likes:
    6,618
    England, UK
    Great result! Thank you to everyone involved :)
    CJB likes this.
  7. satoshikasumi

    satoshikasumi Senior Member

    Messages:
    113
    Likes:
    120
    Dear FDA,

    Why the #@*! have you not granted approval to Ampligen!?

    Yours truly,
    The patient community
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    423
    Raleigh, NC
    This took three separate letters and a sustained effort over time... what some other advocacy attempts have lacked. I also believe that Dr. Woodcock was honest what she said in one of her talks that she was committed to helping the needs of people with chronic illnesses. I imagine it was a combination of things; persistent effort and an FDA official who understood where we were coming from...

    Of course the proof is in the pudding......We'll see how the meeting and the agenda for the meeting evolves.
    Merry and Bob like this.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,717
    Likes:
    652
    Hampton, NH
    I wonder if the Obamacare being held up by the Supreme Court had anything to do with it? They probably want to seem responsive to people, as much as possible and avoid any negative attention in regards to health care and the govt'.

    right?

    GG
  10. SpecialK82

    SpecialK82 Senior Member

    Messages:
    857
    Likes:
    432
    USA
    It was announced in the CFSAC that there are eight drug applications for CFS (one being Ampligen) - isn't that crazy, who would've guessed!! :)

    Maybe this will help boost them all - fingers crossed.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,757
    Likes:
    3,340
    Sth Australia
    Does anyone know what the other drug applications for CFS are? Hearing there are 8, really surprises me.

See more popular forum discussions.

Share This Page