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Submit Disability Q's for White House Virtual Town Hall Meeting on July 14, 2011

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rrrr, Jul 8, 2011.

  1. Rrrr

    Rrrr Senior Member

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    Submit Disability Q's for White House Virtual Town Hall Meeting on July 14, 2011

    ______

    a fellow patient sent this to me and said i could post it. shall we ask about the newly discovered retrovirus, xmrv? -- rrrr
    _____

    Hi,

    This looks like a good opportunity to try to get some questions about ME/CFS and disability to part of the White House staff.....

    Please share the info and link with others. Let's try to get many questions in front of them about ME/CFS and disability in the hopes of getting at least one answered.

    Submit Questions for White House Virtual Town Hall Meeting

    On Thursday, July 14th from 1:00 - 2:00 PM Eastern, Disability.gov will air a live "Virtual" Town Hall meeting to introduce the White House's top advisors on disability policy.

    Do you have a question for President Obama's top disability policy advisors? Disability.gov is offering the chance to have it answered!

    Participants during the virtual town hall who will be able to answer your questions include <https://www.disability.gov/WHQuestion#KareemDale>Kareem Dale, Special Assistant to the President for Disability Policy and Associate Director of the White House Office of Public Engagement; <https://www.disability.gov/WHQuestion#JeffreyCrowley>Jeffrey Crowley, M.P.H., Senior Advisor on Disability Policy and Director of the Office of National AIDS Policy at the White House; and <https://www.disability.gov/WHQuestion#RebeccaCokley>Rebecca Cokley, Director of Priority Placement for Public Engagement, White House Presidential Personnel Office.

    If you have a question that you would like to have answered during the Town Hall meeting, complete the form below by Wednesday, July 13th at 6:00 PM Eastern. Please understand that due to time constraints, not all questions that are submitted can be answered during the event.


    https://www.disability.gov/WHQuestion
  2. SpecialK82

    SpecialK82 Senior Member

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    I think we should ask a question about why it is so difficult to get disability for CFS, stating real ways that people suffer on a daily basis with the illness, etc.

    I don't feel like I have the brain power right now to formulate the question, if someone else can help me word it. I think the first part of the question would have to be some education on the debilitating nature of the illness, the lack of a biomarker at the moment, and then suggest alternative measurements that they can use.

    For instance, they could meet with the clinicians/reasearchers and come up with a list of abnormalities - if we have 6 abnormal values out of the 10 for example, then we have it.

    This would be a stop gap measure until we have a biomarker.
  3. markmc20001

    markmc20001 Guest

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    Here is my question:

    Can somebody please tell me why ME/CFS patients constantly abused by the news media?

    please see the clip below.

    http://www.msnbc.msn.com/id/21134540/vp/43463612#43463612

    I see an older upper middle class white lady working in her beautifully landscaped garden. PLaying with her dogs. Jogging at a nearby beautiful Northern California beach. House is clean everything is well kept. She is Smiling. She knows that she can get on with life and "work through it". She has enough money to get by without disability benefits, and has obviously lived a long and decent life.

    This is not an accurate picture of typical ME/CFS. This is clearly propaganda. Who is creating it and publishing it in the media? and why has this type of propaganda been used against us since the 1980's?
  4. kurt

    kurt Senior Member

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    USA.Earth
    That's just stupid US media not doing their homework. I saw no evidence for propoganda, just sloppy reporting. They are reporting on a healthier subset of CFS because that is all they see. I have seen UK reports that were more accurate. This is not TV, but see the contrast:

    http://www.bbc.co.uk/news/uk-england-dorset-11830123

    Regardless of what you think about UK medical issues, their media does sometimes dig into issues like this better than the fluffy US media.
  5. hope love light

    hope love light

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    East Coast, US
    This must be some kind of a damn joke... They should come to my house and watch me try to walk the 10 steps to the bathroom.
    See that I don't have the energy to take a bath except every other day. See my poor husband bringing all my meals to me in bed.
    Your right where do they get these perky and healthy looking people from.... it's total bullshit and I'm tired of it.
    Hope
  6. caledonia

    caledonia

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    Cincinnati, OH, USA
    I don't really have any questions, just a bunch of complaints. The trick is how to formulate a question in a way that it airs our complaints. The issues we bring up would have to, of course, be in the realm of government. So the question on media, although very important, would not be applicable in this case.

    Here is my list of complaints:
    1. very low funding not on par with other similar diseases
    2. a pattern of psychologizing a biomedical disease, so that any research which is done is useless
    3. a pattern of psychologizing a biomedical disease in general
    4. very difficult to get NIH grants for ME/CFS research
    5. the demeaning and trivializing name "chronic fatigue syndrome"
    6. unable to get recommendations of the CFSAC Committee implemented
    7. a do-nothing head of CFS at the CDC (Elizabeth Unger) content with maintaining the status quo
    8. the inaccurate CDC Empirical definition which causes people with depression to be misdiagnosed with CFS
    9. lack of physician education about CFS so bad that 80% of patients are unable to get diagnosed, much less treated
    10. inaccurate and outdated information about CFS on the CDC website
    11. treatments recommended by the CDC are ineffective or even dangerous
    12. it still takes too long (years) to get approved for SS disability
    13. it's very difficult to get approved for disability with a CFS diagnosis
    14. CFS is not an officially listed impairment
    15. there is no fast track for approving CFS like there are for some diseases, when CFS has been shown to be one of the most debilitating diseases ever

    Anyone want to take a stab at turning these into questions?
  7. Dreambirdie

    Dreambirdie work in progress

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    Mark--

    That woman's name is Valerie Ramsay. I have contacted her daughter (Heather HUmmel) on both FaceBook and on her blog, here:
    http://heatherhummel.blogspot.com/2011/06/valerie-ramsey-speaks-out-on-chronic.html

    I found out through Heather that her mom (Valerie) had been ill with both cancer and a heart condition, and both were easier to overcome than CFS. I left her this comment about this on her blog, along with MANY others:

    I wish that she or the producers of the Today Show segment had mentioned that overcoming cancer and dealing with a heart condition was easier for her than having ME/CFS. That's the kind of message that needed to be conveyed. As it was the editing of that segment made it look like she was doing very well at beating CFS. This is EXACTLY the kind of deception that minimizes this illness and makes it look like all we need is a better attitude and more exercise to "get over it." Very frustrating.

    I encourage you to leave a comment as well.
  8. markmc20001

    markmc20001 Guest

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    Well that's interesting. Great comment. I'll consider commenting. Thanks. Mark

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