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Scrooge meets XMRV

Discussion in 'Action Alerts and Advocacy' started by ixchelkali, Jun 29, 2010.

  1. ixchelkali

    ixchelkali Senior Member

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    I was just thinking about the fact that many of the people who will be making policy decisions about XMRV in the months to come dont know how serious a disease ME/CFS really is. Many, if not most, of them have been subjected to the misinformation campaign of the last quarter century, that its just being fatigued.

    I was suddenly reminded of the scene in A Christmas Carol when Scrooge is being asked for a donation for the destitute.

    I think that attitude is part of the problem we face. We can try to tell them that ME/CFS devastates lives. We can try to convey the heartbreak of the stories we read every day on these forums. But they dont see it, they dont believe it, because they dont want to. Really, no one wants to be burdened with that kind of knowledge; out of sight, out of mind. Its much more comfortable to not know.

    People see things like this when they cant escape it. When it happens to them or their loved one (and sometimes not even then). Thats where star power comes in. When someone so famous that a large number of people feel like they know him or her --someone whom people love-- gets sick, that can put a human face on the disease. Of course, it has to be someone that people wont blame for getting sick (what can you expect, he asked for it with that wild lifestyle or its probably really drug addiction, you know how they are). But even then, with ME/CFS people dont look sick until theyre close to dying from it.

    So how do we make them see the truth? How do we convince them this is serious? When they don't want to believe it?
     
  2. serenity

    serenity Senior Member

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    i understand your feelings tho i think more about my own friends & extended family when i think about these things. it's bad enough strangers dont' care about us but it really hurts when it's the people who are supposed to.
     
  3. jspotila

    jspotila Senior Member

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    I think the XMRV finding created numerous opportunities to bring our case to people who otherwise would never have paid attention. Case in point, the XMRV Task Force recommending that people with CFS not give blood and the AABB approving that recommendation. That's something that would never have happened two years ago.
     
  4. ixchelkali

    ixchelkali Senior Member

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    I think it's the XMRV finding that gives me a sense of urgency about this. Both because if ME/CFS is a contagious disease, we need to try to stop it spreading further (or at least to do what we can), and because when the news hits, it will create a "teachable moment." When they discovered the HIV virus, people already know AIDS was a serious disease, because people were dying from it. True, they weren't terribly concerned until they realized it wasn't just gay men and drug addicts getting it, but they did believe it was serious. Once they realized "anyone" could get it, they started mobilizing to fund research, provide social services to the afflicted, etc.

    My fear is that it will be announced that there's this newly-discovered retrovirus, and yes it's contagious, and yes, it causes ME/CFS. And that the response will be a giant "so what"? Because all it does is make you tired, right? Geez, just tell them to buck up and gut it out like the rest of us do when we're tired.

    My doctors haven't figured out yet how sick this makes me. They are surprised and disbelieving when I tell them. How can we expect to convince Congress, or the general public? How do we impress upon them that this is a bigger deal than bad peanut butter being recalled?

    Maybe we need a schmaltzy Hollywood movie about a mother with a child sick with ME/CFS. Or about an athlete struck down in mid-career. Or about a mother of a child-athlete struck down with ME/CFS... Starring Meryl Streep, Sally Field, Glenn Close, and Winona Ryder. Or maybe a Michael Moore documentary.
     
  5. boomer

    boomer Senior Member

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    That is a terrific idea. That is exactly what is needed. Does anyone know the best producer(s)?? If there were encounters with several people who had cfs they would understand the range of symptoms and the secret lives that people with this disease live eg at work. They can't tell bosses that they are sick or they will be overlooked for promotion or fired. Meanwhile the night before the whole family is pondering if the cfser can make it in to work the next day. My daughter said to me, if other people felt like me they would not go to work. Family members who know the patient can tell the little signs - lips are whiter on a bad day, etc etc. And of course, those who work only have energy for that. I can imagine one scene with people saying their prayers. (I noticed the thread on this site about cfsers saying prayers together at the same time wherever they live to find the cause etc. at 6:00 pacific time and 9:00 my time.) Meryl Streep and several other great actors could do a great job. You all deserve the best actors to play these parts.

    It sure would be neat if the movie came out before the facts. That might make the the news come out faster. Any delay feels unreasonable to me.
     
  6. muffin

    muffin Senior Member

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    Torn about this topic

    When I buzz around the Internet on blogs, websites, responding to articles, etc I always make sure that I use the term "cancer causing virus", when speaking about XMRV. It IS a known cancer virus for an aggressive form of prostate cancer. I, and the experts, also suspect that it MAY also cause other cancers. I make it clear that everyone is a target for this since it probably has been in the blood supply for more than 30 years and is likely a highly contagious virus as well. (I use terms such as may, might, likely, possibly, etc when the evidence is not strong enough to say IT IS.) I play to the huge crowd and the fears of a very real virus that does cause at least one cancer and possilby many more. XMRV may also cause diseases in addition to CFIDS. So, that's the route I take when I discuss XMRV: not just CFIDS but the whole, huge picture that they just don't yet know.

    Had the damn CDC not damaged the Retrovirus work of Defreitas/Wistar back in the 1980's we ALL would not be sitting here with so many unknowns and with so many sick and dead people -- and more in the pipeline not yet recognized. Thanks again CDC!
     
  7. alex3619

    alex3619 Senior Member

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    Hi

    There was a link to another forum somewhere on PR where some CFSer had tried to drum up interest in XMRV. On this forum one of the people looked it up and said something like: "I looked it up on wikipedia and it said Murine means mouse. A mouse virus! Get real!" I don't think it was an exact quote, but it does get the gist of it and points out the kinds of problems we face.

    Bye
    Alex
     
  8. alex3619

    alex3619 Senior Member

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    Hi

    If we want a movie produced we need a script. There are patients with CFS and ME who are published writers and scriptwriters. Maybe we should do a global call and try to get something moving that way? Its not like we lack lots of high drama moments in our lives to write about.

    Bye
    Alex
     
  9. caledonia

    caledonia

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    I agree that whenever we talk about XMRV we should say retrovirus, not virus.
     
  10. Tammie

    Tammie Senior Member

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    Apparently they are trying to publish a "study" they just completed that (of course) did not find XMRV.....bc they didn't find it and the FDA and NIH just did find it, both studies' publications are being held up.....if they do manage to squelch the FDA study, too, it will be unbelievable.....they have way too much power
     
  11. Tammie

    Tammie Senior Member

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    re the movie idea.....I know what you mean about a celebrity and/or a big movie maybe making a difference

    however, there is a movie out called, "I Remember ME" that is pretty well done, there is another one called, "Invisible" that just came out (I haven't seen it but it sounds like it is well done, too), and there is one being made called, "What About ME?" that looks like it is going to be really good

    hopefully the last one I mentioned will get widespread showing (they want to release it to theaters, DVD, and TV)

    the thing with a fiction movie that worries me is that people are more likely to dismiss it because it is fiction....they already think the illness isn't real, or is not that big a deal, so if a fiction movie comes out, they could look at it as made up and therefor confirmation that CFS is not real
     
  12. Tammie

    Tammie Senior Member

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    just had a thought.....wouldn't work, bc it would pretty much kill the patients involved and because it would be pretty boring....but what they need is a reality TV show with ME/CFS patients....I am actually not a fan of reality TV, but it is so popular, and if it were truly reality, then people would see what our lives are like
     
  13. *GG*

    *GG* Senior Member

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    I like some reality TV like Survivor and Hell's Kitchen.
     
  14. citybug

    citybug Senior Member

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    Maybe it's time for a youtube movie of kids with cfs or xmrv
     
  15. shiso

    shiso Senior Member

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    You describe the dilemma so well here, ixchelkali. This is basically just a post agreeing with your points and I don't have good ideas for a solution (though I like to think ideas are brewing and some good ones will come out eventually). :Retro smile:

    I think you identify a key dilemma for us in that - besides the fact that the functional impairment and biological abnormalities that we have are not picked up by standard medical tests (especially by doctors who are not looking for them), thus giving skeptics reason to remain skeptical - a huge additional hurdle is that people just do not WANT to believe the disease can really be that bad.

    The regular people who don't want to believe, or Scrooge and human nature
    I've observed this to be the case whether it's doctors who don't want to admit they can't figure out what's wrong with you (no thanks to the fact that they've been taught to believe it's a wastebasket diagnosis), friends who would rather not think about it too deeply because it freaks them out, or even those closest to us, who may sympathize and want us to get better almost as much as we do, but don't necessarily want to face the reality of our day in and day out suffering.

    The hurdle is even higher with people who don't have any personal ties to the disease - let's face it, Scrooge's attitude towards the destitute (while appearing especially bad because it's a Christmas story) is just plain human nature when it comes to the attitudes of the healthy and wealthy towards inconvenient diseases.

    I will admit that before this happened to me, I really was under the illusion that I was indestructible as long as I ate well and exercised and took care of myself, unless I was unlucky enough to get cancer (and in my early-ish 30s with no family history, I didn't worry too much about that either). I could not imagine that a good workout or a nice strong cocktail after a hard day's work would ever feel bad, or that my ability to earn a good living, be the family member and friend I wanted to be, learn new things, meet new people, and explore the world would ever be compromised in the way that it is now. Even my charitable giving and volunteer work was biased towards fashionable mainstream causes like education and third world development.

    I even remember reading a NYT article about Laura Hillenbrand shortly after Seabiscuit was a big hit and when I came to the part about her illness, I thought, "wow - that sounds awful," but seeing how beautiful she was in her photo, reading that she had a devoted fiance, with her success as a talented writer and not being able to relate to debilitation so bad she needed to rest after showering, I didn't get it about the disease at all. Do I think I was a bad person back then? I could have been a better person, surely, but a bad person? No, not really.

    The people who are much worse than Scrooge
    I believe the people who are far worse than Scrooge or regular people are CDC and other government health agency employees and medical professionals around the world that have, despite knowing full well about the seriousness of the disease, trivialized and given little more than lip service as to the existence of this disease. THEIR inaction is what has led to the lack of funding, research, and public awareness, and to doctors turning ME/CFS patients away in one way or another.

    The collective denial of those who DO know about how serious this disease can be is what is inexcusable and needs fixing in my view. If last week's events with the CDC and NIH papers only emphasized this. But the media leak and the WSJ reporting are small glimmers of hope in what so far has been denial, denial, and more denial, with no one interested in the plight of ME/CFS patients. Whether or not XMRV turns out to be the key discovery or not, hopefully the cat is out of the bag to some degree about the government's treatment of "CFS".

    If we only had some star power...but we shouldn't hold our breath
    I also agree with you about the star power point. I just read Michael J. Fox's book (published this year) "Always Looking Up: The Adventures of an Incurable Optimist" (via Audiobook recorded by Fox reading the text himself). Fox is a remarkable example of what star power and connections can do to advance research for a disease - and of course much to his credit, an incredible amount of hard earned wisdom gained throughout his almost 20 year struggle with Parkinson's as well as his generosity to use his celebrity to help others in his predicament.

    Fox's foundation has funded $187 million in Parkinson's research since Fox founded the non-profit 10 years ago, an astounding amount. In fact, Fox raised several million dollars in a single night at an ad hoc inaugural after-work cocktail party held at his Wall Street hedge fund friend's apartment in Manhattan, before his foundation was even on the map - and has obviously raised many more millions in much bigger scale fundraisers since. I couldn't help thinking one cocktail party of rich and famous people raised more than the total annual budgets of CAA or WPI.

    Fox's path to creating his private PD research foundation was fascinating to me. After he quit his acting career to prioritize his health, he was in a kind of no man's land about what he should do next since acting was the only trade he knew. He got inspired during a vacation in the French countryside, where he happened to see the Tour de France pass through, and through fortuity was invited by Lance Armstrong to view the end of the winning race in Paris. During the same trip, he was invited to attend a fancy event for Armstrong's cancer foundation. This planted seeds in his head of the influence he could have on his own disease. When he got back to NY, one thing led to another and with the advice and encouragement of well-connected friends, he founded and embarked on his foundation work.

    Even to his own surprise, he had private sector finance and corporate professionals lined up for the job of CEO of the foundation (i.e. who valued social prestige over cash in a job at that point in their careers), top notch scientists wanting to become employees and board members, and celebrities willing to appear at fundraisers. Needless to say, he was able to pick and choose and hire top notch talent to keep the foundation running strong.

    I also recently read that one of the founders of Google (Sergey Brin) has donated up to $50 million of his own money to Parkinson's research. Brin doesn't have the disease, but he apparently has a biomarker that indicates that he MAY be affected one day.

    I don't really know what the point was of going on and on about this here (and I've suddenly run out of steam), except perhaps to observe the obvious - that star power or big money leads to more star power and big money, and talent, and quality research. In any event, I would like to read the MJF book sometime again, because it was a good read, and this time with the idea for finding clues that might be more generally applicable for advancing our cause - even without the star power (though real life star power would certainly help!).
     
  16. ixchelkali

    ixchelkali Senior Member

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    Yes, Shiso, I agree. And before I got sick, I was willing to dismiss people with diseases like fibromyalgia, lupus, chronic fatigue syndrome as probably mental cases, either hypochondriacs or crackpots. Oooo, did my karma come back around to bite me for that! :Retro redface:

    I think part of it is that people want to view sufferers of misfortune as somehow "Other"; that is, different from them. People want to be able to differentiate themselves from people who are sick (or homeless or victims of natural disasters or otherwise misfortunate) because it makes them feel less vulnerable. People want to believe that misfortune happens to those people over there, not to themselves. They want to believe that their actions or their circumstances or their characteristics keep them safe. They cling with both hands to the illusion that they are in control, and that being in control somehow protects them, because otherwise the world would seem a very scary place. If they can somehow believe that the victims brought calamity on themselves, or that the victims are in some way fundamentally different from them, then they can maintain the illusion of safety.

    It could be that in this our heterogeneity, our diversity, will work in our favor. As our stories come out, people will see people who look and sound like them. If they believe that they themselves (or worse, their children) could be vulnerable, they may be more concerned and sympathetic. That happened during the polio epidemic. It was "just regular people," and children, getting sick. People didn't feel exempt.

    Or they may just have to work harder to find something, some fatal flaw, in us that sets us apart. Even if it's simply that we're whiners and weaklings who don't handle stress well.

    If only we could all look as cute as baby seals! Or if there were an external manafestation of our debilitation; a metal brace or purple ears or something. One that still left us looking as cute as baby seals.

    Do you think that knowing this is caused by a retrovirus (should that prove to be the case) will change the way most people view us? Or will they continue to see us as chronic whiners?
     

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