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The Emergency Action List

Discussion in 'Action Alerts and Advocacy' started by Frank, Apr 11, 2010.

  1. Frank

    Frank Senior Member

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    Dear supporters and forum members,

    We moved the Emergency Action List to a new address : http://action.aboutmecfs.org/

    If you're new to this and wanne know all about it, please visit the above address. Input and feedback is always very welcome.

    Questions at the moment are:
    -How do we make it as appealing as possible for people?
    -Is it a good idea to support more invisible diseases, as Sience has started linking them to each other (CFS, FM, MCS, Autism, Ehler Danlos, XMRV...)

    Oh; and please tell a friend :Retro wink:
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    frank, how is the emergency action working? I got an e-mail about DSM and I responded (meaning I did what I was asked to do).

    Can you tell if this effort is working, is it growing?

    Tina
     
  3. Frank

    Frank Senior Member

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    Tina, +/- 2 users a day are joining so that's good. We need big numbers to achieve big things. The DMS- mail was just a forward and it's hard to see our influence there, but i think when we'll get involved in voting competions in the future, we will be able to see our impact.(thinking about the Pepsi refresh campaign). If you like to get involved yourself in the FREE action movement, you can always contact me. Any suggestions are welcome. Maybe i could add a part where achievements can be viewed.

    Frank
     
  4. JillBohr

    JillBohr Senior Member

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    Frank, I can't remember if I had signed up or not. How would I know if I did or did notl? May I sign up again in case I did not? Thank you (of dank u wel)!
     
  5. Frank

    Frank Senior Member

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    you can try again, the sytem will know if you're already registered.
     
  6. muffin

    muffin Senior Member

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    There is only 259 people signed up for this ALERT email system! That's BAD!!!

    Guys: Sign up for this!!!!!!
     
  7. citybug

    citybug Senior Member

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    Did the list send out the petition to publish the NIH findings? and change the CDC definition? Thanks. Then there would be emails we could forward.
     
  8. Stone

    Stone Senior Member

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    What is this emergency alert email system? I haven't heard of it. The format of this website is such that it's a little cumbersome for me to keep up with everything. I'm getting used to it and better at it as I go along but what's this emergency thing? It must have slipped through the cracks as so many things to.
     
  9. Frank

    Frank Senior Member

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    It's a mailinglist. You receive mails to do simple actions like voting on the internet, to raise money for ME/CFS and somethimes other NEI-disorders.
     
  10. citybug

    citybug Senior Member

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    If you joined up, please forward the last email to your MECFS friends, especially those who might not be watching everything on the internet, and local support groups. The last one listed 3 petitions to sign.

    Frank is there a limit to the number of times it goes out? I think it should have included the Petition to change the empiric (Reeves) definition, if that link is still working.

    And a great new campaign is the Pandora campaign to put an ad in NY Times.
     
  11. Frank

    Frank Senior Member

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    In my opinion we have to respect a certain peace for the members. One mail a month is a good average i think. A member pointed out earlier on the forum that she did read the mails because they where clear and weren't flooding her mailbox. kdp i think we are the people that can sort out the right messages and questions to then send them in a way that is clear too most PWC's
     
  12. Stone

    Stone Senior Member

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    Could you explain all about what this is in the first post of this thread? I think people will be more likely to join if what this is and does is clearly stated in the first post so new people do not need to read too many posts to try to piece together what this is and what you want to accomplish with it. Just a suggestion. I think it could help a lot. At first glance at the thread under the "What's New?" tab, I thought it was a list someone posted of things to try when you're having a horrible time of things and are very sick. Of course, my brain is offline today so maybe it's just me.
     
  13. Dolphin

    Dolphin Senior Member

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    The petition was out of action for a few days there but is now back online: http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/
     
  14. awol

    awol *****

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    I don't quite understand this project, but if you see a way to link it to Project ENOUGH!!! for better collaboration please let me know.
     
  15. Dolphin

    Dolphin Senior Member

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    Do you mean the petition against the CDC's empiric criteria (Reeves et al, 2005) or the emergency action list in general?
     
  16. awol

    awol *****

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    I'm not even sure. I am reading this with a fried brain.
     
  17. Dolphin

    Dolphin Senior Member

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    Any efforts to challenge the CDC's empiric criteria either by encouraging people to sign the petition or anything else to put pressure on the CDC to stop using it is welcomed.

    Also, in general, the more it is highlighted, the more people will know that the CDC are using an unusual definition so even though they claim they are just using the Fukuda definition, like most research done in the last 15 years, they are not.

    The CDC have done all sorts of research using this definition in the last 5 years e.g. two population studies that appeared to show childhood abuse was heavily associated with CFS, 29% have personality disorders, no XMRV, no sleep problems showing up with objective testing, etc.
     

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