Stepping Into Another’s Shoes
By John Herd
Imagine for a moment you are not a CFS patient, and you’re not tuned in to Co-Cure, the various CFS related discussion forums or Facebook pages. Imagine yourself maybe being a doctor or or someone else just trying to keep up with a very heavy seemingly never ending work load.
Were you such a person you may likely be aware of most of the big ticket issues pertaining to CFS, but you may not be aware of many of the subtleties and their innuendos. While you’ve probably observed some of the politics surrounding CFS, you’re probably unaware of many of its nuances and historic details.
What you do know is that the politics have gotten so ugly and competitive that you want nothing to do with it. In a perfect world science should be free of politics, but we don’t live in a perfect world. Instead you have chosen a path of trying to avoid the politics and to show that you won’t be party to the nasty competitiveness. This may sound somewhat naive but it is admirable.
You are just trying to doing the best you can at your CFS related work.
One commitment you feel strongly about, as most CFS patients would agree, is that we need many kinds of high caliber research conducted wherever it may come from. We need to unravel the mysteries of CFS biology and bring about the development of more effective treatments.
Advocacy and medical research should be and often are closely tied to one another. Effective advocacy can assist the medical researcher in many ways.
Given that politics is never apt to be eliminated from medical research, effective advocates can in many ways run interference for researchers and cultivate fertile ground from which more research may grow. The skilled advocate is aware of many of the political mine fields that the researcher may not be aware of. Advocacy is political and the skilled advocate understands political tactical strategy. So too is the well informed advocate likely to be far more aware of the detailed broad view of the political landscape than the medical researcher may be.
Given all these factors medical research and advocacy should have a collaborative relationship with one another. They share the same goals. By collaborating they may reach those goals sooner, or at least reduce some of the impediments.
Recently Annette Whittemore released a public statement about the Chase Community Giving program and casting extra votes for the CFIDS Association of America (CAA). She then followed that with another public statement in an effort to explain her reasoning.
Although her statements may have been made with the best of intentions, similar to the example presented in the above paragraphs, her words instead set off a fire storm in the middle of two mine fields simultaneously.
For well over a decade the CAA has had an all too cozy collaborative relationship with the health department. Instead of being strong advocates for the needs of CFS patients the CAA has mostly taken actions to promote and bolster their own organizational economic interests. They have repeatedly betrayed the patient sector as they have acted as a puppet for the health department, most notably for the CDC. They were given many chances to correct their misguided wanderings yet they never did so. In turn the vast majority of the CFS patient and medical sectors came to the conclusion that they could no longer support the CAA. People do not forget betrayal, nor should they.
From time to time the CAA, PANDORA and a few other groups have deceptively called for unity. Sincere unity formed around common goals and actions is something we’d all wish to see. That’s not what their calls for unity are about though. Those organizations insist on being the directors on the stage of CFS advocacy and are adamant about doing things their way. While they speak of unity they will have little or nothing to do with others who have differing views. Collaboration to them means do it our way or don’t be included. Above all else they wish to quell being held accountable for their actions and behavior so they call for unity. It is a sham. People won’t forget this either.
Contracting CFS can imposes immense insults upon virtually every aspect of one’s life, one’s health, education, career, economics, social life, even family life. In most of these cases the calamity is brought about by the illness, leaving previously healthy lives in various stages of ruin. When friends, family, colleagues, doctors, health departments, and some in the media add insult to injury the induced emotional pain can run deep. But aside from friends and family the others are outsiders.
When the betrayal comes from a CFS organization, an organization that had once been thought of as the collective “our organization” the insult seems to plunge much deeper. It is being imposed by ‘one of our own,” an ultimate betrayal. People do not forget betrayal, nor should they.
These are the flames of sentiments that got fanned by Annette Whittemore’s recent statements about casting Chase votes for the CAA and by her then speaking of unity. I believe her words were meant with the best of intentions. I’m sure she did not mean to sound as if she was invalidating the strong and justified sentiments patients have nor the less than stellar history of some of “our organizations.”
Annette knows all too well many of the kinds of insults the illness imposes, she has watched her daughter having to live with them. Annette also knows how ugly CFS politics and competition can get; she’s seen some of the ugliest aimed directly at her, at Judy Mikovits and at the institute.
Annette wants the best for her daughter. She wants her daughter to have a healthy vibrant life again. Those are the sentiments that drive the Whittemores to help their daughter and all patients.
Let us not declare Annette guilty for the prior acts of other organizations. Let’s give her and the institute time to proceed in their efforts. No person and no organization is perfect but WPI may still be the best game in town.
© John Herd, ’11
May be reposted with prior permission
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