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In Brief: Muscles and the 'myalgia' in ME/CFS
In the first in a new series of 'In Brief' articles, Andrew Gladman provides a helpful insight into the science behind fairly common topics and explores how they relate to ME/CFS. This time he looks at the muscles, exploring how our reported symptoms might be associated with our...
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Article: The "A Time For Action" Campaign Is WORKING!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 12, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. suezen

    suezen

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    It was clear what Dr. LeGrice was doing at the science presentation today, which was to insinuate that what really needed to be done was to clean out those test tubes and get over XMRV.
  3. Cort

    Cort Phoenix Rising Founder

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    Yes, but the important fact is that Dr. Collins is responding to the pressure and that is what this campaign is all about.

    You want the NIH to starting spending some real money on CFS? - then you'll have to prod them to do so...that's the only way..for 20 years they've never shown any indication that they are willing to do. This is a positive step.
  4. George

    George waitin' fer rabbits

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    Hey Cort, Nice job in the Q and A today. Thanks for heads up about the campaign. I agree that the pressure is defiantly getting to the people in charge. It was obvious today. It seems like the harder they try to misdirect and muddy the waters the harder we need to push.

    Too many of the positive papers are not making publication while the negative papers are piling up in an effort to buy time for more research. What we need to ask for in our e-mails and letters is transparency and timely data from all the parties involved.

    The more they try to obscure the course of research from the patient community the more they look guilty of malfeasance and impropriety. Just let the science happen, let us see it happening and we'll gladly get off their backs!
  5. mojoey

    mojoey Senior Member

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    Utilize http://faxorama.com/ as much as you can! You can send 2 free faxes a day from this site.

    The recipients can filter repetitive emails as spam, but it seems more complicated (albeit possible) to block fax from specific numbers
  6. George

    George waitin' fer rabbits

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    oooohhhh I never thought of that mojoey! You sooooo rock!
  7. Lynn

    Lynn Senior Member

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    Thanks for posting this Cort. I have to admit I was feeling kind of depressed by LeGrice and the guy who did the summary at the end. Hopefully it was just politics..

    Lynn
  8. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I've been faxing and emailing both Collins and Fauci.....tried Sebelius but they never seem to go through. Also when I've emailed Collins I receive an automated reply that he is out of the office on official business until October 17. If he actually gets all of our emails and faxes he's going to come back to his office to a full email box and a stack of faxes a mile high!
  9. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Matlock, Derbyshire, Uk
    Dr. Michael Houghton - friend of Myra McClure ?

    I think that Dr. Michael Houghton (the guy who did the roundup summary) has been paying too much attention to Prof. Myra Clure - did anyone else notice how similar his approach was to the WPI - i.e. wishing them well, hoping that it really works out for the XMRV association and then sticking the knife in by raising the spectre of contamination again whilst ignoring all of the evidence to the contrary.
    Note also that he also reinforced the Weiss assertion that the Alter/Lo did not confirm the WPI findings and hence tried to isolate the WPI as the only research group to have found an association. This is not true - what about the Spanish and Dutch studies ?
    This is politics and bullshit !!
  10. xrayspex

    xrayspex Senior Member

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    a time for action campaign

    I sent an email from my work account to collins and it got through but the one from my private account didnt, I got the autoreply from the form letter one, I also didnt put "what have you done for me" in the subject from the work email account, I wrote a personalized letter regarding my concerns around cfs/xmrv and politics and need for clinical trials etc

    perhaps if now they have it rigged to route all the "what have you done for ..." into the garbage we should consider writing personalized emails with different subject titles and from our different email accounts so their system can't as easily filter them out?
  11. citybug

    citybug Senior Member

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    Dr. LeGrice can tell Dr. Collins that the patients want more research grants. Fund the research! Research the envelope neurotoxin and immune profiles.

    Cort please tell Dr. Houghton WPI doesn't have the only positive studies. I sent him an email but I left some out.
  12. beaker

    beaker CFS/ME 1986

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    I will be away on official travel until October 17. Urgent matters should be brought to the attention of Susan Persons at 301-496-3975. Should official actions be needed during this time, Dr. Larry Tabak (the Principal Deputy Director), has that authority.

    Francis S. Collins, M.D., Ph.D.


    the response I got. Maybe we should all call susan persons tomorrow ?

    ETA-- I forwarded my original back to Collins , but changed the header to "Susan Persons" and wrote at the top of the note: "This is urgent. But it needs your attention.So I try again."
    The other one came back immediately . This one has not come back.
  13. Berthe

    Berthe Senior Member

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    Thank you so much Cort for being there and letting us know what to do. Ik will ask the people on the Belgium/Dutch forum to also send mails with different titles. The more the merrier.

    Love,
    Berthe

    http://www.onwilliglichaam.blogspot.com
  14. anciendaze

    anciendaze Senior Member

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    I've had a concern about this campaign from day one. Part of this is my own personality, and part comes from experience with spammers. Personalized letters, which cannot be machine generated -- or handled -- is the way to go.
  15. RivkaRivka

    RivkaRivka Senior Member

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    hey, folks, keep the faxes and calls coming! bob and others who are at the CFSAC meeting in Wash DC are telling us that the campaign is having a big impact, and we'll hear more about that today during Bob's live testimony. sending emails, too, are great! but they are less powerful (but still helpful) than calling and faxing. if you call, don't let them send you off elsewhere (like the Office of Research on Women's Health) -- make sure yr message is left with the exact office you are calling. if you are motivated, tell them your story of illness and ask our key question, "what have you done for cfs today? patients and their families are waiting!" THE CAMPAIGN IS WORKING!!! DON'T STOP NOW. -- in ME/CFS solidarity, Rivka


    On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families, now is the time to let our federal health agencies know we are expecting big changes. The more they hear from us now, the more they'll listen to us next time we meet. Our "Time for Action" campaign is advocacy made easy -- yet it will have a huge impact. We ask patients, their families and friends to email, call and/or fax NIH Director Collins and NIAID Director Fauci with this simple question every day, starting today.

    (Please click "Add Cc" in your email and put Bob Millers email address - hebs1reel@yahoo.com- in the Cc: box of your email - so he can keep track of how many emails are sent. )

    Dear Directors Collins and Fauci,

    What have you done for ME/CFS today? Patients and their families are waiting.

    Name: John Doe (or John)
    Location: Miami, FL
    Time: Sick 12 years

    Contact info:

    1) National Institutes of Health
    Director Francis Collins
    Email: collinsf@od.nih.gov
    Cc to: hebs1reel@yahoo.com
    Phone: 301-496-2433
    Fax: 301-402-2700

    2) National Institutes of Allergy and Infectious Disease
    Director Anthony Fauci
    Email: afauci@niaid.nih.gov
    Cc to: hebs1reel@yahoo.com
    Phone: 301-496-2263
    Fax: 301-402-3573

    For more Inspiration Check Out Our "How To" video:

    Organizers: Robert Miller, Rivka Solomon, Charlotte von Salis
    Contact: bobmiller42@msn.com
  16. RivkaRivka

    RivkaRivka Senior Member

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    do people see the patients and advocates sitting in the front row in the audience, right behind the presenter? they are wearing the t-shirts bob made that say (in neon green) "NIH, WHAT HAVE YOU DONE FOR ME/CFS TODAY?" they plan to do an advocacy action during the public testimony time. please watch.
  17. zzzz

    zzzz

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    Thanks for the heads up. My only worry is that the Advisory Committee watching yesterday will take LeGrice's talk at face value.
  18. George

    George waitin' fer rabbits

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    I'm hoping the Advisory committee is privy to what's going on behind the scenes. My guess is that they know XMRV is going to turn out to be causal and that everybody including the CFSAC is trying to get stuff in place so they look good. . .at least to the public at large. And who the heck are all these people??? Last May there weren't enough people to fill out the sub committees the groups were having to take on two things to work on. Now there's like elbow only room???? Did I miss something somewhere???
  19. Eressea

    Eressea

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    Can we do this from other countries, too?
  20. xrayspex

    xrayspex Senior Member

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    Rivvka, cort

    Rivvka, can you guys talk to anyone who could tell Houghton or other CFSAC folks to publicly amend all the incorrect things HOughton said yesterday?
    some of his errors that are seriously wrong that we dont want the misinfo to get out:

    - The Weiss info was a different subject, and not rigorous science in ME/CFS.
    - Houghton public conclusions far off the mark regarding XMRV research.
    - WPI does not have the only positive studies. XMRV has been found in ME/CFS in Japan, in the nasal secretions of immunocompromised patients in Germany, in ME/CFS patients from various European countries tested by de Meirleir in Belgium, I think recently in Spain and Italy, and both WPI and Alter and Lo have found polytropic MLV in ME/CFS patients. Dr. Singh can see the cells in her microscope with her immunohistochemistry technique. Dr. Mikovits and Dr. Bagni have antibody tests, and there are the macaques. Most studies have not activated or amplified their blood samples for XMRV detection.
    ----------------
    anyway, rivvka, glad to hear your campaign is working, I will continue to do both then, personalized emails and the barrage of your making

    keep up the good work

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