Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Requested Assistance from ACTUP

Discussion in 'General ME/CFS News' started by muffin, Mar 29, 2011.

  1. muffin

    muffin Senior Member

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    See the link on www.actup.org for ME/CFS. It is on the second page now. The Admin very kindly has given advice which I will take and post a request for assistance to the sites suggested.

    http://www.actup.org/forum/section/news-1/index2.html

    These people KNOW how to get attention and funding. Have a look and maybe post your own statement on this disease and what has been done to us for 30 years. We need to educate the other Retrovirus group and ask for their input and assistance.

    Have to think out of the box and these people DID do that and got the attention and funding they needed. Let's hope we all benefit from the HIV antivirals out there now. Fingers crossed.
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    This is great

    The thing we have been missing is getting the message to the public instead of us just talking to ourselves. Good work, Muffin. Great they included the ad.
     
  3. justinreilly

    justinreilly Senior Member

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    Excellent! We really need their help.
     
  4. muffin

    muffin Senior Member

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    Jimbob's request to ACTUP on their Alerts page - ACTUP put the XMRV image on the page

    Good work Jimbob!! I am trying to find the regional chapter for the Atlanta ACTUP so we can post this request and thread and ask for their abled body support.
    I did email the entire thread to the NY ACTUP people and requested assistance and/or input but have not yet heard back from them. Let's see if these people will help us as we can not do it alone and we know it. They too have damaged immune systems and they too face discrimination, even today with all the new meds and even the new vaccine that I think is going to come out sooner rather than later (?).

    http://www.actup.org/forum/content/...s-disease-control-about-retrovirus-xmrv-3796/

    Call for demonstration at Centers for Disease Control (CDC) in May 2011 about Retrovirus XMRV

    by jimbob

    Published on 29th March 2011 11:52

    Some of you might already know me, I belong to most of the forums and have been donating everything I can to the WPI. For the past month or so I have been planning a demonstration at the CDC in Atlanta, Georgia. I am having a hard time getting enough people to draw media coverage and make a serious impact. Have contacted many, many groups without much of a response. This demo is primarily about the Retrovirus XMRV and the CDC's dismal effort to even acknowledge it, even though it effects 17 million me/cfs around the world, not to mention between 3-7 percent of the healthy population and could be spreading even more through our blood supply! This gross negligence has to stop. Many people have succumbed to this already (see attach), and we can't afford to lose anymore! The demo is planned for May 3rd in front of the CDC building. I know a lot of me/cfs people may be to sick to attend, but those of you who can make it, would really help us out. Because this effects the healthy population as well, you don't have to be sick to attend. If anyone out there knows of a way to increase our numbers, it would be greatly appreciated. Thanks, Jim p.s. sorry, I think I messed up the attachment, it was supposed to be the memorial list.


    This article was originally published in forum thread: NEW Third Human Infectious RETROVIRUS - We NEED HELP! Please!!! started by Marvin04 View original post
     
  5. muffin

    muffin Senior Member

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    Good job Justin!!! Always good to give more info and the videos were a great idea.

    We need bodies for Jimbob's demo on CDC. Now, could we get a flash mob type of thing or ask local theater kids to "act" sick as our people have suggested. But it would be great to have a good size body of people in front of the CDC and the media asking WHY we are there and then we tell the story, the whole sordid story and inform the public about this Retrovirus family. We need help and ideas to get Jimbob's Demo rolling and a good size group of people there. Think!! Thanks Justin!!!!!!!!!

    Re: NEW Third Human Infectious RETROVIRUS - We NEED HELP! Please!!!Justin Reilly, esq
    Thanks for the suggestions. Marvin is right. We ME/CFIDS patients have been abused and lied about by CDC and NIH for over a quarter-century. XMRV and related Human Gamma Retroviruses cover-up by CDC is only the most recent gambit in the government's war on ME science and patients.

    Here are some great short vids on the ME situation:
    What About Me? Trailer - UK on Vimeo
    What About Me? Trailer - USA on Vimeo
    YouTube - Is ME/CFS a type of AIDS?

    We desperately need any help we can get!
    If you are have any questions or comments, please leave them here or at
    Requested Assistance from ACTUP

    Thank you!
     
  6. invisible ME

    invisible ME

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    thank you for doing that, muffin et al.

    for so many reasons, we desperately need the expertise and experience of activists like those in ACT UP. they've been doing their thing for a long time now, and with great success... not that it came easily. although i think there are significant differences between the ME/CFS and HIV/AIDS patient communities, we do have much in common.

    who better to understand our strange relationship to the scientific/medical community and the population at large, than those who have faced such hateful discrimination, disdain, and apathy?

    thanks again.
     
  7. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    WA, USA
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    and thanks very much, for enlisting some able-bodied persons to help. it does sound like there may be some interest and compassion there, which is always fantastic news. :D
     

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