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 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?
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!).