Sunday, May 8, 2011

Our Advocacy: Lasting Damage Done, Despite the Best of Intentions,%20Despite_The_Best_Intentions.html

Our Advocacy:    Lasting Damage Done, Despite the Best of Intentions

By Craig Maupin at 

    In the cinematic realm, good intentions are always rewarded.   Real life is less forgiving than cinema.  In real life, a poor strategy may be well-intentioned, but poor strategy may still hurt vulnerable people --deeply and irrevocably.

    Several actions by a small minority of the CFS community are hurting vulnerable people.    Like most strategies, their actions may be well-intentioned.  Through their efforts, this minority may feel an emotionally cathartic release and empowerment.   Yet, the best of intentions won't keep counterproductive strategies from hurting families affected by CFS -- all of us.

    I love this community.   Like each of us, I have suffered and experienced great loss as a result of this biomedical illness.  But poor strategies compound that loss.   To stand by and say nothing is to idly watch damage being done.

    What strategies am I speaking of?

 1. Verbal abuse and anger-fueled interactions with the scientific community.

    This illness will never be defeated until we forge positive relationships with the scientific community. Period.   A solution will not come any other way.

    For every bridge burned or researcher incited, lasting damage is being done to families and children suffering from this disease. I am deeply concerned that the roving bands of internet advocates extending, rather than alleviating, the suffering caused by this disease.

 2. Unreasonable demands and heated interactions with journalists.

    Solid journalists must tell more than one side of a story. Objectivity should be their job.

    A few weeks ago, the professionalism of a journalist who has been fair in her coverage of this disease was harshly criticized. It didn't surprise me that her next article seemed to subtly portray those with this illness in a different, and harsher, light.

    Like my aforementioned concerns about interactions with the scientific community, burning bridges to journalists will extend and entrench public attitudes behind the suffering of those with this disease.

 3. Patients acting as 'laymen virologists', passionately engaging the scientific community.

    I have felt this disease's full impact. As a result, I am absolutely, 100% confident this disease will have its day.   I say that with no hesitation.   A virus or immune defect is a reasonable explanation for the subgroups of CFS patients with a viral onset, high titers to various viruses, and abnormally expressed cytokines.

    That said, those 'laymen virologists' who are passionately combative with the virology and scientific community online are creating poor perceptions of people with CFS and stifling curiosity about the illness.   Sufferers of CFS desperately want hope.    But a passionate desire for hope should not cause us to overlook the qualifications needed to engage complex virological topics, without losing our credibility.   The scientific community undeniably knows the difference.

    These heated engagements make it less likely that sympathetic researchers will establish cooperative relationships and successfully challenge attributions blocking progress.   Published research by credible scientists is the best way to change perceptions about this disease.    Laymen debating scientists -- on our behalf --will have the opposite effect.
4. Mass letter campaigns

    Given some of what I am seeing written on behalf of those with CFS on message boards and blogs, I am very concerned that mass letter writing campaigns are a counterproductive strategy.   I'll leave it at that.

    Anger is often a byproduct of loss and suffering, and the CFS community has seen its share.   But rather than let anger and passion guide our decisions, each advocate should consider the long-term effects of their efforts.   If our efforts are not creating collaborations, do not build trust and confidence in our community, and fail to portray those with CFS in a positive light, families affected by CFS will harmed.   The harm done may last decades.

    Harmful and permanently damaging strategies may stem from very real problems.   Unfortunately, much of the scientific community's history with this disease has been sloppy and disinterested. Science is often a human consensus, and we are naive to think that consensus is not influenced greatly by gender attitudes, cultural beliefs, professional environments, and language.   But trust, relationships, and credibility must be built over time, if we are to change perceptions.   Our history is no excuse to deepen our problems.

    These four strategies (listed above) are not helping those with CFS.   Rather, they are reinforcing and entrenching negative perceptions of CFS - -and hurting people in the process.    In the last six months, what I have seen on blogs and forums -- often purported to be done our behalf -- is extremely disheartening and discouraging to me.    Lasting damage is lasting damage, even if done with the best of intentions.

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Craig Maupin may be reached at

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