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NIH rejection of Lipkin funding request

Discussion in 'General ME/CFS Discussion' started by Ren, Apr 2, 2014.

  1. Kati

    Kati Patient in training

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    The fax and phone call campaign we did a year or 2 ago was quite powerful . We drove them nuts :)
    We need to build a campaign surrounding. May 12th, with flyers to fax to HHS NIH and CDC. Let's drive them nuts. :)
     
    Last edited: Apr 6, 2014
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  2. vli

    vli

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    @Kati that sounds great--unfortunately a year or two ago I was either just starting Ampligen, or recovering from Ampligen, so I missed it all. Where can I go to find out what happened?
     
    aimossy likes this.
  3. vli

    vli

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    @Kati I absolutely love this! I am doing this--it can be done from home. Again please point me in the right direction.
     
    aimossy likes this.
  4. alex3619

    alex3619 Senior Member

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    Even more nuts than they already are? Nice idea.

    For international advocates we need email for the most part. With some warning then letters might work.
     
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  5. aimossy

    aimossy Senior Member

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    I like it too:)
     
    Izola and lnester7 like this.
  6. Tuha

    Tuha Senior Member

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    It would be great to have a well coordinated worldwide campaign - not only in US but everywhere.
    For example in Europe we have also our own CDC - European Centre for Disease Prevention and Control (ECDC)
    http://www.ecdc.europa.eu/en/Pages/home.aspx

    I think our advocates could prepare the campaign and we would try to encourage as many patients as possible.
    There could be something like list of demands.
    In the past there were already similar campaigns - I think it worked quite good, the governement agencies had problems with massive calls, emails, letters but I think we always stopped it too early after some cheap small promisses. I think we have to keep it till we will see that our demands are accomplished
     
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  7. jspotila

    jspotila Senior Member

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    If you could bring yourself to read the rest of the post, and the other things I've said about NIH spending over the years, perhaps you would notice that I am NOT AT ALL PLEASED OR HAPPY with NIH spending. I don't work for any ME/CFS organization. I am an independent advocate, and as far as I know, I am the ONLY independent advocate regularly digging into the details of NIH spending and activity.

    Here is what I said about 2011 funding:

    I documented that 2012 funding fell by 28.8% from 2011, and I wrote:
    And in my spoken testimony at the May 2013 CFSAC meeting, I said:

    By the way, in my October 2011 CFSAC testimony, I said the following:

    And in the most recent post that you couldn't bring yourself to read, I said:

    You are not the only person who has criticized me for reporting that funding was up in 2013. Was I supposed to lie? Was I supposed to just not mention that funding was up? THIS MAKES NO SENSE. If I am going to hammer NIH in public when funding goes down, then it's only fair for me to point out when funding goes up. And quite frankly, everyone's advocacy is better when it is based on facts. If we complain that funding is down, when it actually ticked up slightly, we lose credibility. Craft an argument that takes into account the 13% increase in spending. Use that fact to highlight that 13% of $5 million is one extra piece of pocket lint. It's like finding money in your pocket and realizing it's a quarter, when what you need is $20 to buy a meal.
     
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  8. vli

    vli

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    There was a discussion on a friend's Facebook page about the May 12th event, and surprisingly someone came up with a video of how this was done--in England, of all places--at Westminster.
     
  9. SOC

    SOC Senior Member

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    The "living death" angle is interesting.

    So, how effective was this demonstration? Did people stop for more info (it doesn't look like it in the video)? Were the views of family, friends, and neighbors changed? Did it generate a media storm? Did authorities take notice? Did any policies change? Was more research funding generated?

    All too often demonstration participants get so caught up in their show that they lose track of the point. They get so busy fine-tuning their performance and trying to be "clever" that they forget that what's important is getting the message where it's going to matter. I'm not saying that happened in the above case. I have no idea how effective their lay-in was. Just suggesting that it's critical to keep our eyes on the prize and not the performance.
     
  10. vli

    vli

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    The only variable here would be, instead of having those same people lying on the ground, to have them, as you said earlier, sitting in wheelchairs. Whether if they had done that, if the demo would've been more effective (a media storm generated, authorities taking notice, research funding generated) is a very interesting question.
     
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  11. anniekim

    anniekim Senior Member

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    Unfortunately, British media didn't cover it so little effect. Interesting Point about would wheelchairs be more effective
     
  12. Kati

    Kati Patient in training

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    My memory is a bit vague, but we were instructed to call HHS and send faxes and emails. Robert Miller was involved with this and we got feedback that it drove them nuts. :)

    What we need is a strong message, a target for our calls, faxes and emails (Sebelius, Koh, Nancy Lee) and start our campaign -do we save ourselves for May 12th?

    What should be our message?
    How about other countries, who do we target? The health minister?
     
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  13. Valentijn

    Valentijn Activity Level: 3

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    How about a contest among the willing participants who have fairly bad (unmedicate?) OI, to see who can stand up the longest? The contest aspect would basically be a joke, but it could be a serious demonstration of the weakness, shakiness, etc, which result.

    I agree with beds being a bad idea. If such a demonstration was in an area I could get to (with help), I'd rather lie on the ground if I had to. I hate the "tired" photos that usually accompany CFS articles, and I think it would be a mistake to play into the "fatigue" stereotype. Similarly, I don't wear pajamas all day, even when bedbound, and frankly that's more of a "frazzled college student" look out in public, not a "sick" look.

    But the easiest way to educate any bystanders would simply be with information: pamphlets, signs with short bits of focused information, etc.
     
  14. Kati

    Kati Patient in training

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    Hi @Valentijn, I am not too keen with this idea as it causes harm in patients, and no one will understand why.
     
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  15. SOC

    SOC Senior Member

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    People in wheelchairs educating bystanders with pamphlets, etc, as you suggest would probably be more effective than some dramatic show.

    But then, what do I know about these things?
     
  16. Kati

    Kati Patient in training

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    How about a 30 days letter writing, for May, ME Awareness month, with a strong emphasis on '30 years of neglect'
     
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  17. vli

    vli

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    This is what Dr Lipkin said in his interview with Simon McGrath about AIDS activism. Unfortunately we are not allowed to show all the contents of the interview because it contains embargoed info pending publication.

     
    Last edited: Apr 7, 2014
    Kati likes this.
  18. Firestormm

    Firestormm Guest

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    I actually wish people would stop using AIDS activism as a tool for comparison.
     
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  19. JayS

    JayS

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    The initiative to get people behind this letter, which I don't like. I don't like a letter urging funds be set aside with no restrictions (meaning we could end up with people like the head of IACFSME getting some of that money for things like 'Efficacy of Home-Based Self-Management for Chronic Fatigue'). And I don't like a letter that says there's 1 million patients. Go to Congress with statistics based on Fukuda, any argument that the CDC has acted improperly is hamstrung by using numbers based on their own research. I don't believe for one second there's 1 million U.S. patients with Ramsay ME, so if I'm going to go to Congress, I'm sure not going to use CDC info to try to win favor.

    But I tried to go to Congress, to complain that a member of an HHS committee claimed harassment by the DFO in a public meeting. My congressman was the key figure in the $13 million CDC scandal of the late 1990s. His office has done quite a bit to help me personally.

    I contacted his office twice about this. I got zero response. Nothing, zip, nada. Period. I had to be pretty outraged to go there in the first place, because constituent complaints to Congress don't seem to amount to much. The dance where they take the complaint seriously, and try to investigate, with the matter ending invariably with CDC or NIH reps insisting the condition is taken seriously, trumping the complaint with implied medical and scientific authority, is something I've heard too many times to have bothered with it much myself. Who knows. Maybe this will be successful.

    I don't like it; I don't have to like it. I would actually care less about the '1 million' figure if there was something in there specifying the money not go to 'psych' or 'coping' or 'stress management' research. So great that somebody decided to do something. Not so great that they didn't include trying to prevent that potential money from going to a place I would prefer to see it not go to. Seriously, the person or people who wrote this didn't think about that?
     
    Kati likes this.
  20. JayS

    JayS

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    Agreed. The two situations are only comparable to a point.
     
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