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Article: Business as Usual or A Time for Change? The CFSAC Meeting

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 11, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Old Salt

    Old Salt Rowing the boat

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    Surely there is a criminal and civil negligence trail a mile long to follow when it is demonstrated how vast the devastation is as a result of the CDC and the NIH ignoring this disease and it's ramifications nation wide.
     
  3. Enid

    Enid Senior Member

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    Surely cannot deny overwhelming viral findings (global) at their peril.
     
  4. CBS

    CBS Senior Member

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    Shirley gets away with quite a lot of BS that one would have never dreamed possible until you live the consequences yiourself.
     
  5. muffin

    muffin Senior Member

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    Shocking to me since I was just going to ignore CFSAC - Day One was Great. Comments?

    SHIRLEY SAYS: Day One - they had some really great researchers giving hard-core evidence that yes, this is a very real disease. I have to watch the Podcast to see it all since my computer was playing games and I missed out on some of what was said - but, what I did hear and SEE (graphs, etc) was amazing.

    Today they did a great job. The CDC/Reeves, UK/Weasel can not deny what was said today by these researchers. Can not refute all that was said and shown.

    So now we must have more money for further research on what these researchers are doing. We need LOTS more money. We also must get this information OUT to the public, policy makers, media, doctors, researchers, etc. We can't just let HHS do that, WE must do that.

    Start thinking of ways to get this info out. I am going to give my doctor the info from today. Have to see if I can figure out how to get the charts, etc. but will give her/him the HHS Podcast address. Time for them to learn about CFS.

    Also, the ME/CFS Worldwide Patient Alliance will be part of getting this info OUT. Hit our site and the Causes site and join. We will be the mouth piece for this sort of thing - but you also need to push this info out to your doctors, media, family, etc.

    Help the MCWPA really push hard on getting this info out and the FUNDS IN for far greater research and clinical trials. We have to hit fast - so join us and help.

    See the First Day's CFSAC. It was great. I was shocked. Don't know what the next days will bring, but they had some serious folks giving some serious briefings. All very interesting. And much above my poor little head - but I got the gist of the importance of it all and we will ensure that the laypeople get that gist as well.

    --->>> Does anyone know how I would get hard copies of these briefing slides? Would they be on the HHS/CFSAC site? Thanks -
     
  6. Hope123

    Hope123 Senior Member

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    Chris Snell, the moderator, at the end said they would get the slides up very soon so you could try checking tomorrow.

    Aside from a few points here and there, most of what was said I already was familiar with or had heard about. The good thing was that they were finally presented to government officials. It's not so much CFSAC itself that is the problem -- a lot of people on it do try to help honestly -- it was that whoever scheduled the meetings before didn't invite these researchers to speak directly about their work.

    I liked that they allowed a Q and A session this time and fixed the slide problems quickly -- within 2 hours or so of when I called NIH.

    [Thank to all the folks that requested Q and A sessions in the past; although it seems like we're going nowhere sometimes, there are small signs of positive change.]
     
  7. muffin

    muffin Senior Member

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    Thanks Hope for that info on the slides.

    I don't pay close attention to the medical aspects as I should. I have been consumed with the MCWPA stuff. But this research was new to me in many areas. We do need to get this info out to the public.
    Hope the Second in Command gets this info to Sebelius and explains to her in laypersons terms what this means and that research money must be moved fast. Sebelius needs to pay attention and if we find out that she has not paid attention - then we go and email/fax/telephone her everyday and get her to pay attention. One way or another HHS is going to pony up those funds for research and do it soon. We, the sick and MCWPA will ensure that Sebelius "gets the message".
     
  8. Cort

    Cort Phoenix Rising Founder

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    For me the first day showed, more than anything else, how much exciting research there is - and how much work could be done - if the govt would only fund it. Researchers are not lacking in ideas or good leads - they are lacking in funding.
     
  9. Cort

    Cort Phoenix Rising Founder

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    The Time for Action Campaign is working. Dr. LeGrice, out of the blue, mentioned that he doesn't need Dr. Collins calling him up and asking him what is he doing for ME/CFS!!!

    Keep the emails and phone calls coming!
     
  10. Hope123

    Hope123 Senior Member

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    While we're at it, can someone at the meeting find out if Dr. Howard Koh, who is supposed to be our DHHS contact for Sibelius , is there? He's not listed on the agenda but if he's not presenting (like Mike Miller of CDC), he won't be listed. Here is a picture of Dr. Koh:

    http://www.hhs.gov/ash/leadership/ash.html

    DHHS CFS reps in the past have a history of saying they will follow up with the Secretary and then not showing up and not bringing CFSAC recommendations to the Secretary. All those hours and days of work for nothing...............................................................................

    And please say "thanks" to ?Christine Williams from Agency for Healthcare Research and Quality (AHRQ) for pointing out that patient recovery is something that needs to be asked not just of patients but of their family members as patients cut down on their activity and say they're OK when in fact, they're not when their families are asked about how patients are functioning compared to pre-CFS. [She said her husband would bring up things they could no longer do after she came down with CFS.] A point brought up by Lenny Jason and David Bell as well. Ms. Williams has CFS also. I hope Ms. Williams can push for AHRQ to review all studies about CFS.
     

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