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.

Watch October 2012 CFSAC videos online

Discussion in 'Action Alerts and Advocacy' started by Hope123, Oct 19, 2012.

  1. Hope123

    Hope123 Senior Member

    Messages:
    1,171
    Likes:
    687
    The US federal CFS Advisory Committee (CFSAC) videos are now up on the government's Youtube channel. Please watch at least one, a few, or all of it at your own pace. More views = more public interest from the government's point of view.

    Of special interest might be the talk by the Social Security representative, FDA, and the "Path Forward" "Finalize Recommendations" portions. The latter two concern case definitions for ME/CFS. Public testimony sections are always riveting.

    Here are the recommendations coming out of CFSAC transcribed by volunteers. The final form is not yet up.


    Welcome & Opening Remarks (CFSAC Fall 2012)



    Biomarkers - An Overview & Future Look (CFSAC Fall 2012)



    Public Comment on Day One - AM (CFSAC Fall 2012)


    Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012)


    FDA & Drug Development (CFSAC Fall 2012)


    http://www.youtube.com/watch?v=_fIEeQBdvxM&feature=plcp
    Public Comment on Day One - PM (CFSAC Fall 2012)


    http://www.youtube.com/watch?v=Fs1A6KhHInU&feature=relmfu
    Committee Discussion & Plans for Day Two (CFSAC Fall 2012)


    http://www.youtube.com/watch?v=PWBmqd8LDhg&feature=plcp
    Opening Remarks & Agency Updates (CFSAC Fall 2012)


    http://www.youtube.com/watch?v=af_r5LiIjXQ&feature=relmfu
    Social Security Administration (CFSAC Fall 2012)

    http://www.youtube.com/watch?v=qGb0U6EaI4o&feature=relmfu
    Public Comment on Day Two (CFSAC Fall 2012)

    http://www.youtube.com/watch?v=MTHpny0u-XU&feature=relmfu
    ME/CFS Organizations (CFSAC Fall 2012)


    http://www.youtube.com/watch?v=NFaXiiSdZqI&feature=relmfu
    A Path Forward (CFSAC Fall 2012)


    http://www.youtube.com/watch?v=CO9bO-udcY0&feature=relmfu
    Finalize Recommendations (CFSAC Fall 2012)

    http://www.youtube.com/user/USGOVHHS/videos?query=CFSAC
     
    August59, ggingues and vli like this.
  2. Hope123

    Hope123 Senior Member

    Messages:
    1,171
    Likes:
    687
    Yikes, the system timed out before I could get the recommendations up. Here they are, as transcribed by volunteers. The final version is not up yet. Thanks to everyone who watched (or will watch!) the videos and also the many people who attended or submitted testimony to CFSAC. Because of your efforts, the CFSAC website no longer has a direct link to the CDC Toolkit! Now the CDC just has to pulling down the Toolkit on its own site and modifying sections to reflect the most current science and clinical care recommendations by ME/CFS experts.

    1. CFSAC recommends that the Secretary promptly (before 12/31/12 or as soon thereafter as possible) and in consultation with CFSAC members convene at least one stakeholders (ME/CFS experts) meeting to examine the Canadian Consensus case definition (Carruthers, 2003) and its utility for diagnosis and treatment of ME/CFS.
    2. CFSAC recommends that there be a standing committee for review of ME/CFS proposals at NIH.
    3. CFSAC recommends that NIH issue an RFA of $7 to 10 million to establish outcome measures, including but not limited to biomarker discovery and validation, in ME/CFS patients. (Note: This replaced a recommendation limited to just biomarker discovery and validation passed by the committee during the same discussion.)
    4. CFSAC recommends to the Secretary that she endorse the Coalition 4 ME/CFS option 1 proposal for the ICD10-CM that was recommended at the 9/19/12 NCHS public meeting. (Note: The committee passed this recommendation despite advice from Dr. Nancy Lee (DFO) that the Secretary would not intervene in the ICD10-CM process.)
    5. CFSAC recommends that the Secretary allocate specific funds to study cluster outbreaks of ME/CFS.
    6. CFSAC recommends that the Secretary allocate funds to study the epidemiology of patients with severe ME/CFS.
    7. The members also voted unanimously to send a thank you letter to President Obama.
     
    SpecialK82 and CJB like this.
  3. roxie60

    roxie60 Senior Member

    Messages:
    1,732
    Likes:
    544
    Central Illinois, USA
    Been watching the public comment vids. Lots of comments to remove the 'CDC Toolkit' looks like they finally listened
     
  4. roxie60

    roxie60 Senior Member

    Messages:
    1,732
    Likes:
    544
    Central Illinois, USA
    Why are they sending a thank you to Pres. Obama?

    Has this committee and its efforts been useful to those with CFS/ME and their supporters?
     
    ggingues likes this.
  5. roxie60

    roxie60 Senior Member

    Messages:
    1,732
    Likes:
    544
    Central Illinois, USA
    Stopped listening to the FDA presentation, took 80% of her time blowing the FDA horn and all the resources they have and all they do to protect the public, blah blah blah. What is the FDA doing to further meeting the needs of practitioners in their study and treatment?
     
  6. Hope123

    Hope123 Senior Member

    Messages:
    1,171
    Likes:
    687
    President Obama asked National Institutes of Health (the federal agency that is the main funder of medical research in the US....yes, even more than pharmaceutical companies) to give ME/CFS more attention in August. Right now ME/CFS research funding is one of the lowest out of 237 conditions. NIH spends about $4-$6 mill a year on ME/CFS = less than $3/ affected person/ year -- less than the cost of a cup of coffee in some US cities. (I believe my life is worth more than a cup of coffee, which is why I post about these issues.) He asked his Deputy Chief of Staff Nancy Anne De Parle to keep track. Phoenix wrote about it here:

    http://phoenixrising.me/archives/13145

    The committee has been around for 9 years and have made many recommendations but many have been ignored by the federal government although it is the committee charged by the US government with figuring out an appropriate response (research/ clinical care/ Medicare coverage/ educations of doctors, etc.) to ME/CFS. Things may be changing though; the committee wanted to thank President Obama because his increased attention might mean their recommendations will be heeded more.

    more info: http://www.hhs.gov/advcomcfs/index.html

    The FDA talk is interesting because towards the end she talks about obstacles to ME/CFS drug development. It's easier to figure out how to convince someone (FDA/ pharma companies, etc.) of something (develop a drug) if you know what their reservations are. The FDA actually has been recently very responsive to patients; tell them how you feel:

    http://phoenixrising.me/archives/14049
     
    roxie60 and CJB like this.
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,162
    List of video clips **with speakers listed** for CFSAC Fall 2012 meeting

    http://www.prohealth.com/library/showarticle.cfm?libid=17654


    This page lists who spoke in each of the Fall 2012 CFSAC Meeting YouTube Clips.

    Many of the people from the US who are active currently in ME and CFS activism spoke.

    Thanks to everyone who spoke - I imagine it takes a lot out of people, both in preparing the testimony, then waiting around to speak and then the act of speaking and dealing with the adrenaline rush, etc.
     
    ggingues likes this.

See more popular forum discussions.

Share This Page