Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Join the National PR Campaign for ME: Power to the Patient (P2tP)

Discussion in 'Phoenix Rising Articles' started by Nielk, Nov 20, 2014.

  1. caledonia

    caledonia

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    I would also like to add that the NIH is going to be doing a media campaign to promote the results of the P2P and we need to be ready to counter it (with our own media campaign). This was mentioned in Jeannette's FOIA material.

    Here is a link to where I found this:
    https://www.dropbox.com/s/rwhll0ybmladpy4/FOIA_P2P_Batch#1a.pdf?dl=0

    Pages 106-107. Starting in mid-February -
     
    Last edited: Nov 24, 2014
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    What's the time frame for that?
     
  3. caledonia

    caledonia

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    Reply from Adam Swart:
    Their likely response will be to defend the redefinitions as something that's needed and necessary. Then we will respond to that with our message about how terrible these definitions are. If they start mud-slinging, they will look bad as they are bullying the disabled. We can use that against them to gain sympathy for us.

    Also please see post #21 in this thread. The NIH is already planning their own media campaign to promote the P2P definition. We need to be ready to counteract this with our own message.
     
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  4. caledonia

    caledonia

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    The FOIA info says the NIH's media campaign will start mid-February 2015.

    Ideally, we would like to start our campaign in January, so we can start talking to new Senators and Representatives and possibly find a champion for ME.

    This was something that Llewellyn King talked about as a goal for lobbying in Congress. With a champion, our chances of getting increases in research funding are much greater.

    We can also get our message out there first before the P2P even comes out.

    So that means we need to be funded by the end of December. That's about five weeks from now, folks.
     
    Last edited: Nov 24, 2014
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  5. catly

    catly Senior Member

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    I think this initiative is extremely important given what is happening with the P2P, IOM and what we just learned about HHS trying to twist CFSAC recommendations, once again. We can not continue to allow paid US government employess to continue to do this to us.

    I just donated to this campaign. I hope we get enough money for this to move forward.
     
  6. Dreambirdie

    Dreambirdie work in progress

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    A couple of us put this together on FB today. The bottom is NIH's bogus infographic about P2P, which as we all now know is designed to shove M.E. under the rug. The top is the reality check for those at NIH.

    Please share it and spread it around.

    1511205_333407876843217_8713645138962014034_n.jpg
     
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  7. alex3619

    alex3619 Senior Member

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    Unless they don't start mudslinging but instead claim this is unstable political activists, possibly delusional, and that similar attacks against researchers (not research, they probably wont claim that) are well known from ME and CFS activists. They may paint us as crazies. We have to be prepared to counter any eventuality, including the crazy militant activist angle. The fact there is not one shred of hard evidence for this claim is irrelevant.
     
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  8. caledonia

    caledonia

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    Hi @Molly,
    Here is a specific answer to your questions from Adam Swart, CEO of Crowds on Demand.



    When we start the campaign, we will formulate a media strategy that emphasizes the disease as a debilitating physical rather than mental condition. When we take it to the major media outlets, they will likely solicit the NIH and others for comment. It’s impossible to guarantee anything when it comes to media coverage. The media often does come up with its own narratives. However, what I can say is that the perspective of the patients that we have will be extremely powerful. That is, if a doctor from the NIH is saying this is psychological while a patient is saying they are suffering, the viewers and the American public are going to believe the patient.




    Like I mentioned, our most powerful weapon is the fact that we have all of you who can testify to the fact that this disease is truly a physical condition and that however much you would like to be able to be cured and run marathons/etc, that is just not possible. It will be obvious to the media that you don’t want to be in this position. Anecdotes about patients who have tried the exercise/diet/attitude approach and either died or gotten worse will be helpful in this regard. Most importantly though, once the NIH and co starts hitting back, that’s where we will know we would have made an impact! If they’re responding and engaging in a debate with us, that means that the debate is really happening and we are getting our message out there. It means the organization will be able to dramatically increase fundraising and get taken seriously by the NIH and appropriate policymakers.
     
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  9. jimells

    jimells Senior Member

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    Many troublemakers (I don't like the word "activist") think they can control the media and the message. Nope. It doesn't work that way. The media have their own agenda, which may or may not align with our agenda. When reporters depend on access to government officials, they mysteriously start thinking and talking like government officials. For an example of how this works, one only needs to examine how the NY Times and Washington Post consistently promote the war agenda of whatever president is in the White House.

    What we need to know is, does Crowds on Demand have actual personal relationships with important media people who could be sympathetic to our story?

    I don't understand why Mr Swart thinks the public will believe patients over the doctors. Decades of ceaseless propaganda has convinced Joe Sixpack that anyone who isn't working as hard as he is (and he is working plenty hard!) is lazy, weak, and looking for a handout that will somehow make Joe even poorer than he is already.

    If you want to know how the NIH etc will respond, just look at the response of the psychobabblers in the UK to advocacy.

    None of the above is to suggest that we shouldn't buy a PR campaign. I'd just like folks to understand what we are up against. "City Hall" has worked mighty hard to make sure that nobody can fight it and win.
     
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  10. jimells

    jimells Senior Member

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    Hmmmm, actually there may be a fair amount of evidence that I'm a crazy militant activist. It's certainly not something I would deny. :angel:
     
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  11. Nielk

    Nielk

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    It would be great if we could get some of our ME experts on board as well. I am sure that many would welcome the opportunity to speak up for us where the media is concerned. If i comes down to believing patients, doctors and researchers in the disease as opposed to government agencies, I think that we have a stronger message.

    Ultimately, though, we will never know unless we give it a try. We really need all the help that we can get, especially at this dangerous crossroads. HHS is getting ready to announce their P2P and IOM results with a big splash. We need to have a way to counter this and I feel that we can have a stronger, noisier voice with the help of this PR voice than without it.
     
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  12. caledonia

    caledonia

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    That would be great. I am open to this possibility. Whatever works.
     
  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    In my opinion, the message that I want to really get out there is that this illness is not an issue of getting run down and exhausted (fatigue) but it starts with not being able to ramp up and create the energy needed to function (our 'set point' of maximum energy ability is far lower than normal).
    The other issue would be that this affects, for the more severely affected extreme cognitive problems (slow processing, poor decision making and other issues) And that many are affected by co-morbid conditions especially POTS.

    I would like the media to be educated as to many other illnesses that have been maligned as 'malingering' only to have a clear physical causation discovered later. Absence of definitive diagnostics is not proof of absence of physical causation has been seen time and again.
     
    Last edited: Nov 25, 2014
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  14. caledonia

    caledonia

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    @jimells All replies are from Adam Swart, CEO of Crowds On Demand.

    Yes, I have relationships with reporters and producers at many top-tier media outlets including Good Morning America, NPR, USA Today, etc.

    Look at the 'Obamacare' debate. The American public is skeptical of Obamacare because they believe they should have a say in their treatment and are worried about the government demanding certain types of treatments for certain conditions (remember the whole "death panel" fear back in 2010?).

    I've said this before--I think if the NIH begins responding to us, that means we've been hitting the right notes and getting attention. For everyone who opposes the cause, there will be others who will want to join.

    I cannot guarantee what exactly will result from the campaign. I will say that currently the organization doesn't get enough attention to even land on the NIH radar. That means that the NIH has so far effectively avoided even debating the issue. Once it's out in the media, the NIH will be forced to debate and you will be free to tell your compelling stories. This will help us fundraise more and also recruit high-level policymakers to join our cause which will finally achieve the results we are looking for.
     
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  15. Kati

    Kati Patient in training

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    Oh crap.
     
  16. vli

    vli

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    From the website:
    Can someone explain this to me like I'm a three year old?

    Why is it that only 5600 of the supposed 1 million US patients have signed Patricia Carter's petition?

    Is it wrong of me to, on that basis, query the "1 million in US" figure?

    As a patient who was doing zero fundraising or advocacy work I was shown this petition to sign one year ago. Why haven't more patients done the same? Is it all explained by the stigma of ME? I am not even a US citizen and thus pay no tax to the HHS.

    Thanks.
     
  17. caledonia

    caledonia

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    Hi vli, I've pondered this same question. I believe it's a combination of most people with ME are not diagnosed with either ME or CFS (85% are not). Then you have to be well enough to be online. Then you have to be aware of the issues. Most people seem to be focused on support, not politics. Then you have to look at the reach of the petition. Who did Patricia reach out to, and did it go viral on social media or not.

    There were actually two petitions, which would confuse things. The total signatures were 10,000. That doesn't mean there wasn't some overlap between the two (I know I signed both).

    The petitions were given to a Congressional aide by Susan Kreutzer and the whole thing was filmed for the documentary, The Forgotten Plague, coming out in 2015.

    Considering all the various factors, that's a great response for us, maybe the best ever for anything.

    But unfortunately, the petitions did nothing. We need to do more, which is why I am fundraising for a professional public relations firm to help us out.
     
  18. lnester7

    lnester7 Seven

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    @caledonia there are media savy people that maybe they can help us. Is there a group working on the plan for this??? Where can I contact them?
     
  19. caledonia

    caledonia

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    That is me. I started ME Advocacy.org earlier this year. We are fundraising to hire a professional public relations firm. You can read more here: https://meadvocacy.nationbuilder.com/donatepr
     
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  20. vli

    vli

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    Hi. Sorry, just curious as to where this figure comes from?
    I was barely 19 when I got sick (now 33) and it was severe enough for me to stagger my way to a bookstore and buy Dr Teitelbaum's "Fatigued to Fantastic" (I am no fan of Teitelbaum, but that was the first "literature" I came across about ME). So while I am making absolutely no judgement on these people--it completely baffles me (especially now that there are more people with computers and an Internet connection than ever before) that 85% of sufferers have NOT stumbled across the terms "ME" or "CFS" in their investigations on or offline (mine started offline in 2000?!).
    I am a huge fan of this initiative. I really want to help out. But when a petition that only takes a few clicks to sign has only 5600 signatures after a potential 1,000,000 after one year, and the website says the petition is one of three things people can do to "take action", then it isn't wrong to see the number of signatures as a sign of something. Either the CDC figure is wrong or we aren't unified enough as a community. If people can create an account on Phoenix to discuss treatments they can spend one minute signing a petition that your organisation says is so important.
     

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