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!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

ME/CFS Orgs Push Secretary of Health Sibelius For Strategy Meeting

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

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
    View the Post on the Blog
  2. Sasha

    Sasha Fine, thank you

    Messages:
    7,859
    Likes:
    6,244
    UK
    Fantastic, Cort - I recommend everyone to read the letter, it's brilliant.

    Thanks to you and everyone else who contribute to this.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I think it is brilliant (even though I had little to do with it). I think getting all the orgs together is brilliant as well - I don't think that's ever been done before (at least not in the last 10 or 15 years..). Let's get that petition signed!
    taniaaust1 and katim like this.
  4. Sasha

    Sasha Fine, thank you

    Messages:
    7,859
    Likes:
    6,244
    UK
    Hi Cort - I haven't been following whether the petition was annonced earlier as I'm not a US citizen and presumably can't sign but it's an unusually important petition - would it be worth giving it it's own thread in case people don't read your article (or just skim it and miss the bit about the petition)?
  5. Denise

    Denise Senior Member

    Messages:
    170
    Likes:
    233
    Hi Sasha,
    Everyone can sign the petition, regardless of where they live.
    It would be great if everyone who signed got as many other people (friends, family, co-workers, etc..) as possible to sign. Please spread the word.
    taniaaust1 and Merry like this.
  6. Sasha

    Sasha Fine, thank you

    Messages:
    7,859
    Likes:
    6,244
    UK
    Hi Denise - thanks for that - maybe that could be added to the article or the title of any new thread on it (that non-US people can sign).

    Looking at the petition page, it seems familiar - could I have signed it already? Has it been up a few weeks?
    taniaaust1 likes this.
  7. medfeb

    medfeb Senior Member

    Messages:
    149
    Likes:
    160
    Hi Sasha,

    I added a note to the petition indicating that those outside of the U.S. can side. The petition has been up for a few weeks so you may have signed earlier.

    Thank you for spreading the word

    Mary
  8. Gemini

    Gemini Senior Member

    Messages:
    383
    Likes:
    230
    Cort, you make great points about DHHS's management of ME/CFS. Note DHHS operates on the basis of a "triage system" in fact NIH uses the jargon "triaged" to refer to how their grant applications are managed. (ER's also triage their patients).

    Your statement "CDC considers ME/CFS as disabling as MS, Lupus, RA, heart disease, end-stage renal disease...and similar conditions" means that in a properly working "triage system" ME/CFS should be classified at the same level as these diseases in terms of funding, staffing, time & attention and total DHHS resources applied which is NOT the case.

    In a strategic meeting with DHHS, you might consider using the triage concept with your great funding charts.
    ggingues likes this.
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I think some of the problem is what researchers want to work on, sadly enough. Unless the NIH provides researcher the assurance that they are going to get funded researchers aren't going to flock to ME/CFS. It wouldn't take alot - a grant opportunity called an RFA - that guarantees 4-5 million dollars in funding a year would be a big boost but DHHS officials aren't willing to consider even that small amount.

    If the system were based on need ME/CFS would get alot of funding but it's clearly not based on need....which is why I think it is based on researcher preference - which is pretty sad....
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    Cort,

    Thanks for this very good article and advocacy.

    The main reason researchers don't study this disease is there is very little funding. Fund it and the researchers will come, regardless of the disease or it's reputation. A dedicated fund isn't even necessary. If NIH simply funded more submitted ME applications, a 'signal' would go out and more researchers would apply. This is NIH's fault, not the researchers.

    I have sent emails to my entire address book. I urge everyone to do likewise, and to send to Facebook friends, etc. I have included the text below, and as always, feel free to copy some or all of it. Thanks everyone for the good work.

  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    I am now adding the following to my email:

  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    We're at 721 so far. Racking up those signatures. Good work everybody! Let's keep getting as many as possible.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    If anyone who was so active and great at getting votes in the Chase contest could help out by sending signature requests to the lists of patient orgs around the world you compiled, that would be amazing.
  14. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    Response I received:


  15. liquid sky

    liquid sky Senior Member

    Messages:
    350
    Likes:
    156
    "This communication is consistent with 21CFR10.85(k) and constitutes an informal communication that represents our best judgment at this time but does not constitute an advisory opinion, does not necessarily represent the formal position of the FDA, and does not bind or otherwise obligate or commit the agency to the views expressed."
    I love the disclaimer on the bottom. Nice of them to answer you though.

See more popular forum discussions.

Share This Page