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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Article: Dr. Peterson and ME/CFS Patients Meet with NIH Officials Prior to XMRV Works

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 8, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
  2. Sasha

    Sasha Fine, thank you

    Messages:
    7,587
    Likes:
    5,618
    UK
    Terrific article, really powerful testimony. What amazing advocates.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    What an amazing meeting Bob engineered. Bob has been focused on advocacy issues for quite some time and I know he's been racking his brain about what the next step is. I think he found a darn good one!

    It again demonstrates how much things have changed in the past year - both on the federal end and on our end.

    We do need to get away from this

    There 5,000 papers published on CFS - that # even includes comments on papers. Very, very few of them focus on pathophysiology and biology; maybe 20 or so out of the hundreds of 'papers' on CFS that will be published this year will try to explain it in biological terms. There is VERY LITTLE study of the type we want taking place.

    When Gottesman says this

    The response, I think, should be why is so little study being done on 1,000,000 sick people that cause the economy 20 billions a year in economic losses. Why is CFS spending at the NIH nearly dead last?

    We, as a community need to keep on the ball and make sure that spending increases. Keep supporting advocacy efforts everywhere - when a group of ME/CFS patients gets a meeting with upper level NIH officials - we're starting to have a little bit of leverage; now is the time to step into the gap and attempt to move the issue!
  4. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    Wow. Wow. I'm so impressed by, so proud of, and so grateful to these patients. It sounds like they did a good job of speaking for us, and I can only imagine what it will cost them in days of pain and exhaustion. Thank you, thank you, thank you. And another thanks to Dr Peterson, bless his heart, for standing with us once again.

    It's encouraging that NIH representatives were willing to meet with patients. I'm not surprised to learn that they aren't aware of the history of the NIH involvement with ME/CFS (or lack thereof). Nor is it surprising that they aren't aware that Stephen Straus is not beloved by patients; they've probably only ever heard one side of that story. The NIH has a lot of history to overcome if they are to regain the trust of the patient community, but agreeing to meet with and listen to patients is a good first step.

    Fixing the research funding process would be another good step. They need to quit hiding behind that worn-out cant about the lack of published research or about the lack of worthy research proposals. If for no other reason than because it's ridiculously circular logic: we can't fund research because there hasn't been enough research done. ???!!! Who is supposed to take the first step away from that little do-se-do?

    Nevertheless, these people are not Stephen Straus or Anthony Fauci, and shouldn't be held responsible for the sins of others. They at least showed up at this meeting and I'm willing to give them the benefit of the doubt, even if I remain skeptical. So a thanks to the NIH officials, too, and my sincere apprepriation for the work of the NCI and the DTM on XMRV.
  5. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    "Gottesman talked about how respected Dr. Alter is and how Alter's interest in our illness and his published study will change everything for our illness. Alter, and his paper carry a lot of weight."



    Time to be both hopeful and active. Thank you Bob, Rivka, Dr. Peterson, and Cort.
  6. Resting

    Resting Senior Member

    Messages:
    116
    Likes:
    8
    I am so grateful to all of the individuals who are still fighting hard after many years of neglect, to put it politely. The hope that fuels their fire is so inspiring. Thank you for sharing this article and for your contributions to the meeting as well as your advocacy role in this war.
  7. patjdeb

    patjdeb

    Messages:
    11
    Likes:
    0
    Thank you so very very much!

    All of you, for your courage and, of all things, considering this disease, your clarity and persistence.
  8. Kelly

    Kelly

    Messages:
    85
    Likes:
    17
    small correction re: stephen straus

    This isn't about spelling really, but just so that the record is correct and people can research the correct person, the NIH researcher praised by Dr. Gottesman was the late Stephen Straus. Many search engines, such as PubMed, require a correct spelling in order to get results.

    Sounds like an interesting meeting.
  9. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,231
    Likes:
    1,587
    Australia
    Ah, the well known CATCH-22. How are we to have decent science if no one funds any!?!

    It is sad that they are still playing the excuses/political game. We are also lucky that Alter at his age can afford to wager all of his reputation for our cause.
  10. Cloud

    Cloud Guest

    I really like what ixchelcali says...Wow, wow!

    Powerful, moving, and hopefully effective! Much gratitude to Robert, Rivka, Dr Peterson, other patients, and the NIH reps willing to listen.

See more popular forum discussions.

Share This Page