Diff'rent Strokes
HEALTH ADVOCACY ORGANIZATIONS INTENTIONALLY USE A WIDE RANGE OF STRATEGIES
This discussion reminds me of an excellent presentation I saw once by a Canadian Rare Diseases organization. The chief executive of this organization was eloquently describing the reality that different strategies are needed at different times, and by different people, in different situations. In fact, "mixing it up" is essential.
- When facing an imminently dying child who needs a certain type of blood product only available on the other side of the globe, an urgent, in-your-face approach is often necessary... or the child will quite simply die.
- When medically collaborating with repeatedly uncooperative agencies, escalation - with an overt attempt to be SEEN by the media - is often the only recourse.
- When describing a devastating illness that has been ignored for decades by the medical establishment, emotional overlay is unsurprising, indeed a natural response.
NO REASON TO BE ASHAMED OF EMOTION RESULTING FROM A DEVASTATING AND NEGLECTED ILLNESS
My experience at rare disorders conferences is that the testimony of patients, and indeed their loved ones - provided in a forum comprising government, industry, clinicians, researchers, and other patients, provides a dose of medical reality that is lacking in the clinical conferences I've attended.
WHEN IS "BEING NICE" A HANDICAP?
ME/CFS appears to strike people from all walks of life. However the preponderance of middle-aged women has me wondering... is it really necessary, indeed productive, to be "nice"
all the time? If this were a male-dominated disease, would the patients keep intoning, "let's be nice"? Suzanne Vernon's comment that the CDC XMRV study was "designed not to find XMRV" is an example of appropriate edginess IMO.
TELLING IT LIKE IT IS: WHAT WE'VE BEEN ASKING FOR!
THIS is what we've been asking for! Tell it like it is! So identifying Alan's wife's profession, and her specific interest in psychosomatic medicine - after a heavily bias-laden interview on the part of Alan - is ENTIRELY germane to effective advocacy.
I for one am not ashamed that this community is not emotionally robotic... and that it shows heart when describing the devastation of this illness, or in responding to bigotry. This is a healthy, normal reaction. That said, I totally agree that hard, cold reason and crystal clear scientific examples are beneficial in illuminating our points.
SEEING THE FOREST FOR THE TREES
Taken as a whole though, I see the comments about Alan's bias and his own vitriol against ME/CFS patients as something the media and Vince NEEDS to see, and that is why I continue to screencap this type of exchange. I would not at all be surprised if Dr Racaniello were mortified at Alan's progressively toxic outbursts, and deeply regretted including Alan - and his unscientific bias - on this program. I know that any of the high-level health execs and scientists that I used to work with would be.
ILLUSTRATING BLATANT UNSCIENTIFIC BIAS
I see the exchanges on TWIV about Alan's bias, and Alan's blog as a wonderful illustration of the blatant unscientific bias that us patients have been up against. Bringing up psychiatry was totally irrelevant to this TWIV episode. And the dialogue ensuing online will indeed provide wonderful grist for those investigative reporters. In fact, if it weren't for the online follow-up, Alan's true colors wouldn't have surfaced so starkly.
MEDIA COVERAGE IS NECESSARY!
In other words, the media SHOULD eat this up! If the following comments aren't mediagenic, I don't know what is:
Alan:
- Youre entitled to your beliefs. Just try not to step off any balconies.
- The comments so far are pretty much what I expected to hear: Im an idiot, people are suffering, the science is already settled, and a CDC-based conspiracy is suppressing the truth.
- Kim, regular TWiV listeners already know what my wife does for a living. Youre the only loser who had to waste three hours Google-stalking me to figure it out. Heres to your future graduation from the eighth grade
- I said what was on my mind, you all said what was on yours. Now you can go yell at someone else and then wonder why they stop listening, too.
Read that last caption again... Alan's saying this to patients who, as a result of medical neglect, now have neurological damage, viral cardiomyopathies, and known lymphomas. Would you repeat Alan's words to an MS, cancer, or heart attack patient? If Alan's words aren't mediagenic, I don't know what is.
Bottom line, things will unfold as they do. There WILL be a balance of emotion, thoughtful reasoning, nerdy science, and good ol' smackdowns. This is not a monochromatic community, nor should it be. And taken as a whole, our voices simply tell it like it is.