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Getting Attention Strategy for Advocacy

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 13, 2013.

  1. Nielk

    Nielk

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    From 'Back to Basics - Advocacy as a model for catalyzing change'. here (Posted by Liz Willow on Facebook.)



    Are we willing to just sit by and let HHS slide this illness back 25 years or worse? I for one do not want anyone in the next generation to suffer like I have suffered without hope for the past 10 years. Some have suffered fro much more. is this the legacy that we are willing to leave our children?
    Delia likes this.
  2. SickOfSickness

    SickOfSickness Senior Member

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    Not many healthy people care enough to fight for us. Or they are too busy caring for us directly, and can't travel for advocacy.
    SOC and ukxmrv like this.
  3. readyforlife

    readyforlife Senior Member

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    It would be great to get a group of people together to protest. But how many people can afford the fly across the country and also pay for hotel?
    ukxmrv and rosie26 like this.
  4. readyforlife

    readyforlife Senior Member

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    If you could choose one place to protests where would it be?
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not sure how to get inexpensive flying, but there is some kind of "house" in DC where lodging is supposed to be cheap. Not sure how comfortable or accommodating it would be though?

    GG

    PS Perhaps someone will recall the name of the place. I did a little search, did not find it, I think they send out emails, not sure the last time I got one, or if I elected to stop?
  6. alex3619

    alex3619 Senior Member

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    Washington DC would get my vote as the number one place for a protest. However I think we should be planning a simultaneous virtual protest if we want to do that. What if every person at the protest had written or video protests on their laptops or tablets or phones to show people and the media? From all over the world? We could also compile written statements into books, simply print and bind.

    HIV is politically different to us. Its a disease that horrified people, that potentially had everyone at risk, for which people who are sick but mostly asymptomatic can still protest effectively. We are often perceived as some crazy fatigued people, and only crazies are at risk, and most of us are too sick to do anything.

    However the biggest problem is pervasive apathy. Most patients don't get involved. For ever one who does, there are tens of thousands who don't. That is not an inspiring ratio.
    Tammy, snowathlete, aimossy and 3 others like this.
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think the biggest problem is pervasive exhaustion.
    Delia and SickOfSickness like this.
  8. alex3619

    alex3619 Senior Member

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    Pervasive exhaustion explains why we aren't all traveling to our representatives for personal lobbying, why we are not all marching on street corners, why we can't do very much about it most of the time. Combine that with those of us with very mild illness, or near recovery who are trying to hold onto a life, or too sick to even use a computer, and that explains some more. Add in disempowerment from spin and propaganda and bad medical advice, and from government inertia and ignorance, and add in the disorientation, confusion and despair that goes with this illness so often, and it explains some more.

    However these are factors we cannot control. Why is it though that only one in tens of thousands clicks on a button for a petition? That's not onerous. Sure, many wont have computer, or cannot handle the visual images on even facebook ... for some of us even simple visual processing is a problem. More might be depressed and in despair, and think its not worth it. What about the rest?

    Its not just that they do not know about the problems and issues ... I think they don't. This goes to why they don't. Why are they not at least tuning in online every now and again, and voting occasionally? Why do so many not even know the problems in advocacy? I occasionally encounter people who should know at least the basics, are online at least some of the time, but don't seem to know anything at all about modern issues in ME or CFS. I know of support organizations that have stated to their own members that they don't want to know. Or that think ME is psychiatric, so getting involved is a waste of time.

    These arguments do not apply to anyone who can find and read threads like this. They don't apply to anyone too sick or poor to be online. They do not apply to those almost well enough to be normal who are struggling just to work enough hours to survive. They also do not apply to anyone in severe depression because things are just so hard for them. What about the rest? Why are so many not even bothered to type something into a search engine from time to time?

    Under one set of assumptions I have posted elsewhere, the ratio of those involved in advocacy versus those who are not is on the order of 1 to12,000. Even a more optimistic appraisal is 1 to 6800. That is a very minute ratio of advocates to others.

    Lets just confine ourselves to Europe and the US though, where computing technology is often available, and usually affordable. Lets presume two million patients, but eliminate half as too sick, too poor, or too something else.

    Using co-cure subscription as a guide, there are maybe 2500 advocates. This most optimistic appraisal I can come up with has a ratio of 1 advocate to 400 who could advocate in their own interest, but don't. Why?
    snowathlete likes this.
  9. alex3619

    alex3619 Senior Member

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    There was one more reason I did not mention that I think is important: fear and intimidation. How many patients are afraid their part-time employer will find out, that their insurance company or doctor or government institution supplying benefits will not like what they are doing? I am not guessing about this, I know it happens, I have heard the stories more than once. What I do not know is how common this is. I think you could probably add friends and family to that as well.

    This is especially true in the UK where sectioning has been used as a threat to force compliance.
    Delia and peggy-sue like this.
  10. alex3619

    alex3619 Senior Member

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    One final point. I am well aware of how we prioritize things. I do wonder if this is not a prioritization issue. I am having to cut back on my activity at the moment, and every day I have to make a choice on what I do. Is it the case that too many of us have prioritized moment to moment issues, and do not have a thought for the future? It might be. However since these people are not speaking, I don't know for sure.
    Delia likes this.
  11. snowathlete

    snowathlete

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    All good points Alex. I think there is a lack of good leadership. I think this would need to change before those who currently do not take part, started paying attention and joining in.
  12. Tammy

    Tammy Senior Member

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    The AIDS activists had something "Visible" on their side which helped..............you could tell after awhile that a person was ill with HIV or AIDS. Also people were dropping like flies and dying and that of course got EVERYONES attention. Another thing, in the beginning it was more than just a fight for awareness for the disease.....it was also a fight for "gay" awareness.................they were not only fighting for their lives they were fighting for their dignity as it was first thought of as a gay disease...........so all gays sick or not got on board.............They were fierce! I hate to think that if we were dropping dead like flies that CFS/ME would finally get the attention it needs.
    Delia and SickOfSickness like this.

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