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ME Advocacy Action: Urgent - Ask Congress to Cancel IOM Contract and Adopt CCC!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 12, 2013.

  1. Nielk

    Nielk

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    Patient advocates are advising us to keep fighting this IOM contract. We need to show support for our 35 experts who signed a letter against the contract. To understand why this is so important the advocates have written a letter clarifying misconceptions regarding the HHS/IOM contract. Please read this important Q&A here http://bit.ly/1hIz4ej

    We need to continue pressing our case with congress to tell HHS to cancel the IOM contract and adopt the CCC. The alert can be found here http://bit.ly/GPzfcr

    Even though the government is shut down, the messages sent through the web forms are still being logged and will be there when congressional staffers return.
     
    Delia, beaker, Marty and 3 others like this.
  2. Ember

    Ember Senior Member

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    Don't Let Petition Fatigue Set In:
    Contact Congress to Stop the IOM Contract and Adopt CCC

    By Mindy Kitei
    Saturday, October 12, 2013
     
  3. caledonia

    caledonia

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    I sent letters to my reps, but all this cutting and pasting is ridiculous. There is technology to make this easier - where you put in your name and address one time, and it looks up who your reps are. Then the letter is already pre-filled. Basically, you hit one button to send the letter to all your reps. It takes less than a minute. The current process took me 10 or 15 minutes.

    I belong to a couple of groups who have this set up for their advocacy. The Center for Food Safety is one example. You sign up for their email list. They send out advocacy alerts it seems like at least once a week. You press one button, and boom, you're done.

    And they are making a difference. Between the emails and working with a rep, they were able to get the Monsanto Protection Act repealed.

    We need to get as organized as these folks are!!! I think this is something we can duplicate, even with our limited abiltiies.
     
    justinreilly, Delia, beaker and 3 others like this.
  4. Nielk

    Nielk

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    Why is this contract so dangerous? Look at the two parties involved and look at the contract.

    HHS: Since day one of this illness, HHS has fought the reality of the illness. Their agenda? Make ME/CFS disappear. Dilute it out with 'mental disorders'.

    IOM: Their only experience defining disease is with GWI. They have basically done what HHS has been dreaming to do to ME/CFS.

    hence-

    The contract: The contract was processed with deception, in secret with lies. It gives IOM the free hand to do exactly what they have done to GWI.

    Please take the time to write to your congressional representatives.
     
  5. JohnnyD

    JohnnyD Senior Member

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    Where is the sense of urgency from Phoenix Rising?? Why isn't this topic permanently at the header of this forum --- instead we have --- "join or team of writers and editors!"??

    Who would want to write about the IOM process of turning back the clock 25 years on ME/CFS!?
     
    Delia, ggingues, justinreilly and 3 others like this.
  6. Nielk

    Nielk

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    I'm in middle of writing an article about that. Do you have one mind?
     
    Delia likes this.
  7. Ember

    Ember Senior Member

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    Good question!:thumbsup:
     
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  8. Firestormm

    Firestormm Guest

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    Why don't you (and/or others) submit an article? Instead of waiting for others to do something for you that meets your approval?

    If you are asking for Phoenix Rising to take a position. Well that's not my call. But if you or anyone else wants us to publish another article on this subject you are so passionate about - I suggest you work together with others who share your stance and submit something.
     
  9. JohnnyD

    JohnnyD Senior Member

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    I think there are a number of articles already written that explain the urgency - articulate, with history and back ground links that explain exactly what the situation is --- in fact, group them all together and keep the best one at the head of the forum!
     
    beaker and ggingues like this.
  10. JohnnyD

    JohnnyD Senior Member

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    I mean, something happened in August - Did Lipkin told Sebellius and Fauci something different than his public statement - his public statement is strong, especially concerning Lyme. What happened that created such a shift away from the existing experts and CCC, ICC? Why are they trying to bury CFS/ME again? I think it is best if articles come from patients -- I'm here trying to help my sister.
     
    ggingues likes this.
  11. caledonia

    caledonia

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    I'm replying to myself, lol. I spent some hours today looking at and testing various Wordpress plugins, CRM software and so forth.

    The type of system that the Center for Food Safety is using is probably something like Capwiz. It's pretty expensive, something like $2000 to set up and then $3000 per year.

    ActionKit looks really cool, but is also expensive - it's $2200 per month if you have 100,000 people on your list. This is an offshoot of the MoveOn software used for presidential campaigns.

    Another good looking option is Nationbuilder, which starts out at $19 per month, then would increase as you got more members. http://nationbuilder.com/pricing

    I believe Capwiz and ActionKit could integrate with Wordpress (what Phoenix Rising is using).

    Nationbuilder would be more appropriate if you were starting from scratch with a new website dedicated to just advocacy. I could see where something like this could pull in people from various orgs to work together. I believe it has a function whereby people could vote on issues and then you could figure out what the majority wanted. That way you could have a consensus about what the patients wanted, and hopefully not have various factions fighting with each other.

    CiviCRM is free and could integrate with Wordpress or Drupal, but it's open source, which means you have to be a technical wizard to set it up and maintain it. The other ones I mentioned above are turnkey.

    This is a big issue - if you want to email your representatives with one button click, over the past few years, they've mostly switched to webforms instead of email addresses. The software you pick has to know how to fill out the webforms. Only the more expensive softwares have this capability. For example, CivicCRM will not do this.
     
    Delia, snowathlete and Bob like this.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Good question, hope it's not due to Obamacares?

    GG
     
  13. snowathlete

    snowathlete

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    Well done for not only raising the issue but for taking it a step further and looking at solutions. Without that, things aren't likely to move forward. A lot of people on this forum raise ideas but expect someone else to make it happen. Do well done for standing behind your conviction and being the one to do the doing.
    As you know, PR already uses WordPress but the cost will likely be an issue for those better options. Sometimes you can get it free if its for non-profit use so it might be worth asking.
     
  14. caledonia

    caledonia

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    I'm ready to put my money where my mouth is, to the extent that I'm able. I just started volunteering for PR with some content editing, and that may extend to other areas eventually.

    I was hoping that some of the developer/programmer types on this forum would know about this stuff, but I guess not. My background is more in graphic design, but I've learned Drupal, Joomla and Wordpress and have built several websites on each platform, so I'm somewhat familiar with this stuff.

    I don't know about free, but I did see where one of the softwares had a cheaper rate for non-profits.

    We can always do some fundraising if we feel it's that important and necessary. I don't know what the budget is like around here, but I would think that Capwiz, for example, at $2000-3000 per year, would be attainable. That's 300 people giving $10, once a year.

    Ironically, these type of softwares often have fundraising features built in.
     
    Delia and beaker like this.
  15. beaker

    beaker CFS/ME 1986

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    I'd pitch in that much. I think it's time for us to gather together and get more organized and act.
    Otherwise we will always be represented by groups that do not truly represent us.
     
    Delia and Iquitos like this.
  16. Ecoclimber

    Ecoclimber Senior Member

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    There is a company that donates free software and hardware toward non-porfit organization.
     
  17. Nielk

    Nielk

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    There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

    If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.
     
    Delia and justinreilly like this.
  18. Ember

    Ember Senior Member

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    On October 12, Wildaisy posted, “I don't know about everyone else, but I am not able to speak on the phone long enough to say the whole message above, so I will use an abbreviated message.” Today she added to her abbreviated message this two step (U.S. only) action:
     
    Delia and justinreilly like this.
  19. Delia

    Delia Senior Member

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    I'm in. I'll do whatever you want.

    I just got frustrated and started a Facebook page for now, just to get something going for the immediate now. :( and I bare,y know how to do Facebook.
     
    Ember likes this.
  20. Liz Willow

    Liz Willow

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    Delia and anyone else interested, there's a Facebook group that's been in operation for about two weeks now you might want to join. It's called "U.S. Campaign for Myalgic Encephalomyelitis (M.E.)

    https://www.facebook.com/groups/624505110934978/
     
    justinreilly likes this.

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