Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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e-mail a day for the release of the Phase II info from the NIH/BWG

Discussion in 'Action Alerts and Advocacy' started by George, Nov 14, 2010.

  1. George

    George waitin' fer rabbits

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    I'm trying to put together a little Dust up to let the BWG/NIH know that communication the key to their peace of mind as well as ours. I also wanted to make it easy-peasy.

    I have e mail addresses for most of the BWG list and a couple of sample e-mails. The hope is you copy and paste one of the e-mails and the addresses that you want to send to and then paste, hit send and you are done for the day! easy-peasy.

    The hardest part will be making sure you have a unique "subject" line each time so that we don't end up in the Spam bin. (big grins)

    NOTE :As you might notice I'm not the most passionate person in the world and tend to be a wee bit on the analytical and dry side so any one who like to post a more passionate take on this please do. So if others have e-mail forms that they want to share that would be great. Also, I'm not the leadership type so anybody who wants to jump in and take over feel free (grins)

    Repeat daily until we get our results. (big grins)

    Copy and paste one from here (or your own if you want. It can be as little as one line)
    _______________________________________________________________________


    The dry one but it says what want, to who we want it given and when we want it.


    A little less formal

    _______________________________________________________________________

    If we get enough people to send e-mails daily until they respond then we will jam up their mail boxes. (not nice but not a horrible thing either) The IT people will yell and that should get their attention. Hopefully it will not only get them to release the information but maybe get them thinking about putting together some kind of patient/NIH communication together. Make their lives a lot easier in the long run. (grins)


    ______________________________________________________________________

    Below is a list of e-mail address of the people involved who need to open lines of communication with our patient community. You can choose to send a daily e-mail to all of them or some of them or even none. (grins) But I'm really hoping that you will send to all on a daily basis, making sure you have a unique subject line each day so ya don't get tossed in the spam bin!

    Please be sure to copy phase2reportnow@gmail.com so George can keep tabs on the campaign.

    Kathleen Sebelius Francis Collins Anthony Fauci Dennis Mangan
    BWG members

    NHLBI - Simone Glynn - Chair HHS - Jerry Holmberg - Co-chair NIH - Harvey Alter ABC - Celso Bianco CDC - William Bower BSRI - Michael Busch ARC - Roger Dodd FDA - Jay Epstein FDA - Diane Gubernot NIH - Eleanor Hanna CDC- Michael Hendry MVRBC - Louis Katz AABB - Steven Kleinman CDC - Stephan Monroe NCI - Francis Ruscetti ARC - Susan Stramer BSRI - Leslie Tobler CFIDS - Suzanne Vernon ?????
     
  2. George

    George waitin' fer rabbits

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    PS - Please feel free to take this campaign on the road and re-post any and all parts of the above two posts anywhere you think it may be helpful.
     
  3. Francelle

    Francelle Senior Member

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    Good work George.

    In the first example email there is a word missing. I'm assuming the word is meant to be community! So "The ME/CFS community has struggled for years and we are now asking to be informed and ...."
     
  4. George

    George waitin' fer rabbits

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    Thanks Francelle - I fixed it and sent out the e-mails today using the second one. It sounds nicer. (grins) I sent it out as one long comma deliminated string and I omitted Dr. Ruscetti cause I like him better.

    [text]francis.collins@nih.gov,anthony.fauci@nih.gov,dennis.mangan@nih.hhs.gov,glynnsa@nhlbi.nih.gov,jerry.holmberg@hhs.gov,halter@mail.nih.gov,cbianco@americasblood.org,wab4@cdc.gov,mbusch@bloodsystems.org,dodd@usa.redcross.org,jay.epstein@fda.hhs.gov,diane.gubernot@fda.hhs.gov,eleanor.hanna@nih.hhs.gov,mhendry@cdc.gov,lkatz@mvrbc.com,skleinman@shaw.ca,stephan.monroe@cdc.hhs.gov,stramers@usa.redcross.org,ltobler@bloodsystems.org,cfids@cfids.org[/text]
     
  5. BEG

    BEG Senior Member

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    NICE WORK, George. Slobbery kiss to you. :D

    I must plead ignorance here. What excactly do you mean by Phase II?

    I am armed and ready to fire off the e-mails. :cool: Will pass this along, too.
     
  6. George

    George waitin' fer rabbits

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    Hey BEG The Blood Working Group has 4 "trials" that they are running. Phase I was to set up the four labs of which the WPI, CDC, FDA and another one tested their ability to find XMRV in spiked samples. That one was completed a couple months ago.

    Phase II is how to find XMRV in patients and it will define the "gold standard" that is used from here on out. The protocols that are necessary in order to find XMRV in patients include handling, storage, primers, assays the whole shebang.

    The Phase II portion should have been finished and the information released no later than the first week of November. They talked about it at the XMRV conference in September, where they almost had it worked out and then at the CFSAC meeting they promised to release the information as soon as it was ready. We are pretty sure that the information has been released to the scientific community but not to the patient population.

    Since the release of the information to the patient population would allow us to compare the "correct" way to find XMRV to all the other "ways" that people are trying to find XMRV then it's pretty important that the information be available to us. Plus, it settles the "contamination" question once and for all. (big grins)

    This little dust up is more or less to train the people at the NIH early on that they might as well just deal with us cause we are not going to take no for an answer. So please feel free to jump in and e-mail the above list at least once a day. More if your up to it. We just want to jam them up a bit until they deal with the patient community fairly and with transparency.

    hope that answers the question right.
     
  7. Otis

    Otis Señor Mumbler

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    Hey George,

    Can I suggest you consolodate the background info and email addresses into the first post so it's all on one place for folks?

    Great work my canineish friend.

    Otis
     
  8. Otis

    Otis Señor Mumbler

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    Sorry for the late feedback. I'm personally going to try to not bother folks like Ruscetti as he's got no ability to managerially influence in the release of info and I'd prefer he was in the lab. :) Any chance we refine the list a little?
     
  9. George

    George waitin' fer rabbits

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    Hey Otis
    Everything's fine. (grins) I'm going to leave the list the way it is with all names and addresses, people can pick and choose but I want them to have the full list to choose from. If you would like to put together your favorites lists and share that would be great. Like I put my list out there sans Dr. Ruscetti's name.

    Honestly I don't think this campaign is going to take off. Most folks are feeling pretty bad right now and just trying to get through the holidays is always tough. But we ran it up the flag pole. It's all good. (grins)
     
  10. BEG

    BEG Senior Member

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    Otis/George,

    I've consolidated George's information on a word document so I can easily distribute it. I've removed Dr. Ruscetti's e-mail address. Hope this is OK with you, George. Woof! Woof! ;)

    A LETTER WRITING CAMPAIGN TO THE BLOOD WORKING GROUP OF THE NIH written by George of the PR Forums

    The Blood Working Group has 4 "trials" that they are running. Phase I was to set up the four labs of which the WPI, CDC, FDA and another one tested their ability to find XMRV in spiked samples. That one was completed a couple months ago.

    Phase II is how to find XMRV in patients and it will define the "gold standard" that is used from here on out. The protocols that are necessary in order to find XMRV in patients include handling, storage, primers, assays the whole shebang.

    The Phase II portion should have been finished and the information released no later than the first week of November. They talked about it at the XMRV conference in September, where they almost had it worked out and then at the CFSAC meeting they promised to release the information as soon as it was ready. We are pretty sure that the information has been released to the scientific community but not to the patient population.

    Since the release of the information to the patient population would allow us to compare the "correct" way to find XMRV to all the other "ways" that people are trying to find XMRV then it's pretty important that the information be available to us. Plus, it settles the "contamination" question once and for all.

    This little dust up is more or less to train the people at the NIH early on that they might as well just deal with us cause we are not going to take no for an answer. So please feel free to jump in and e-mail the above list at least once a day. More if youre up to it. We just want to jam them up a bit until they deal with the patient community fairly and with transparency.

    1. Below is a list of e-mail address of the people involved who need to open lines of communication with our patient community. You can choose to send a daily e-mail to all of them or some of them or even none. But I'm really hoping that you will send to all on a daily basis, making sure you have a unique subject line each day so they don't get tossed in the spam bin!

    Please be sure to copy phase2reportnow@gmail.com so George can keep tabs on the campaign.

    Kathleen Sebelius
    kathleen.sebelius@hhs.gov
    Francis Collins
    francis.collins@nih.gov
    Dennis Mangan
    dennis.mangan@nih.hhs.gov

    BWG members

    NHLBI - Simone Glynn - Chair
    glynnsa@nhlbi.nih.gov
    HHS - Jerry Holmberg - Co-chair
    jerry.holmberg@hhs.gov
    NIH - Harvey Alter
    halter@mail.nih.gov
    ABC - Celso Bianco
    cbianco@americasblood.org
    CDC - William Bower
    wab4@cdc.gov
    BSRI - Michael Busch
    mbusch@bloodsystems.org
    ARC - Roger Dodd
    dodd@usa.redcross.org
    FDA - Jay Epstein
    jay.epstein@fda.hhs.gov
    FDA - Diane Gubernot
    diane.gubernot@fda.hhs.gov
    NIH - Eleanor Hanna
    eleanor.hanna@nih.hhs.gov
    CDC- Michael Hendry
    mhendry@cdc.gov
    MVRBC - Louis Katz
    lkatz@mvrbc.com
    AABB - Steven Kleinman
    skleinman@shaw.ca
    CDC - Stephan Monroe
    stephan.monroe@cdc.hhs.gov
    NCI - Francis Ruscetti
    ruscettif@mail.ncifcrf.gov
    ARC - Susan Stramer
    stramers@usa.redcross.org
    BSRI - Leslie Tobler
    ltobler@bloodsystems.org
    CFIDS - Suzanne Vernon ?????
    cfids@cfids.org

    1.NOTE : As you might notice I'm not the most passionate person in the world and tend to be a wee bit on the analytical and dry side so any one who would like to post a more passionate take on this please do. So if others have e-mail forms that they want to share, that would be great. Also, I'm not the leadership type so anybody who wants to jump in and take over feel free.

    Repeat daily until we get our results.

    2. Copy and paste one from here (or your own if you want. It can be as little as one line)
    __________________________________________________ _____________________


    The dry one says what we want, to whom we want it given and when we want it.

    To the Members of the NIH Blood Working Group
    From the ME/CFS community

    RE: Phase II trial results

    The members of the patient community would like to request of the NIH and the Blood Working Group that the results of the Phase II trial be released to the patient population either through one of the many advocacy groups or to members of our internet media population no later than December 3rd.

    The results of this trial are vital to the understanding of research being conducted at this time. Our community cannot judge the validity of current work without it. The ME/CFS community has struggled for years, and we are now asking to be informed, and for the NIH Trans-working group and the Blood Working Group to provide important information and transparency to the patient community in a timely manner.

    Opening good lines of communication with the patient community can keep things running smoothly in the future.

    Signed
    A little less formal:
    Dear Blood Working Group Member

    Your work is of vital importance to me as a patient. I have spent years educating myself in an effort to work with uncooperative doctors, to educate family and friends and to help myself. I need be able to understand the research that is being done right now and I need your help to do this. Please, release the results of the Phase II trials recently completed so that I can validate research that is being published regarding XMRV.

    The NIH seems to be taking the ME/CFS community to heart for the first time in decades and I would challenge your agency to open the lines of communication and to open them wide. Keep us informed of the results of the trials and the working of the NIH in regards to ME/CFS and lets build a working relationship now and in the future.

    I am requesting the information from the Phase II trials be released to an advocacy group or to the community media no later than Dec. 3, 2010.

    God Bless and Happy Holidays
    __________________________________________________ _____________________

    If we get enough people to send e-mails daily until they respond then we will jam up their mail boxes. (not nice but not a horrible thing either) The IT people will yell and that should get their attention. Hopefully it will not only get them to release the information but maybe get them thinking about putting together some kind of patient/NIH communication together. Make their lives a lot easier in the long run.
     
  11. Otis

    Otis Señor Mumbler

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  12. BEG

    BEG Senior Member

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    OK, then. Won't that be easier? Thanks, Otis. Did I miss this link somewhere?
     
  13. George

    George waitin' fer rabbits

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    WOW, cool you guys rock! True leadership skills are great to watch. (grins)
     
  14. Otis

    Otis Señor Mumbler

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    Hey BEG - The link is new and your work to consolodate this is much appreciated. I tired to nudge George there but he's a hard pup to train. ;)
     
  15. George

    George waitin' fer rabbits

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    (embarrassed) rolled up newspaper is required. I have very few technology skills sorry guys.
     
  16. Otis

    Otis Señor Mumbler

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    You pulled together the raw data and pushed the idea. The rest is easy. ;)
     
  17. Otis

    Otis Señor Mumbler

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    I finally got my mojo working and here's how I feel about it.

    We have been promised transparency. We've been told we would see these results early this month. Polite emails to the BWG chairs have been ignored. All indications are that the data is in and being quietly circulated - e.g. Lipkin NY meeting of 11/5. Time to stop knocking and kick the door in.
     
  18. RivkaRivka

    RivkaRivka Senior Member

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    thanks for doing all this work, everyone. this is the email i'm about to send. feel free to copy and paste it and use it:

    To: francis.collins@nih.gov, anthony.fauci@nih.gov, dennis.mangan@nih.hhs.gov, glynnsa@nhlbi.nih.gov, jerry.holmberg@hhs.gov, halter@mail.nih.gov, cbianco@americasblood.org, wab4@cdc.gov, mbusch@bloodsystems.org, dodd@usa.redcross.org, jay.epstein@fda.hhs.gov, diane.gubernot@fda.hhs.gov, eleanor.hanna@nih.hhs.gov, mhendry@cdc.gov, lkatz@mvrbc.com, skleinman@shaw.ca, stephan.monroe@cdc.hhs.gov, stramers@usa.redcross.org, ltobler@bloodsystems.org, cfids@cfids.org

    From: xxxxx
    Subject: Blood Working Group: We are waiting
    Cc: phase2reportnow@gmail.com

    Dear Blood Working Group:

    ME/CFS patients and their families are waiting.

    After decades of being ignored, marginalized and psychologized, after decades of watching our lives pass us by, we are DONE with simply waiting for respect, information and action. We demand transparency: It is crucial you keep us informed of all progress made by the Blood Working Group. Most immediately, what are the results of the BWG's Phase II? ME/CFS patients and their families, doctors and researchers need to know.

    Rivka
    CFS 21 years
     
  19. George

    George waitin' fer rabbits

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    Shear Perfection Rivka (wagging tail and clapping paws)
     
  20. George

    George waitin' fer rabbits

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    Day to e-mails sent, Check!
     

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