mojoey
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I copy and pasted the following exchange from the publicly viewable CAA facebook wall to shed some light on the public response to CAA telling patients it plans to use its "inside voices" as opposed to the ACT-UP tactics that many patients are now espousing and calling for. Questions about exactly what the CAA plans to do in the way of XMRV research have gone unanswered. The exchange led to some investigation, which then led to some interesting findings about the CAA's financial activity.
Joseph Chang
Joseph Chang
Jennifer Spotila
Joseph Chang
Joseph Chang
I've heard the CAA repeated state that it does not use ACT-UP tactics and that its M.O. is using its "inside voice", which I liken more literally to its "library voice." At the same time, it states that its mission is "To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment."
Nowhere in your mission does it state a need to remain inflexible and insistent on a particular approach to advocacy. The CAA reminds me of monolithic companies that are have attained a monopoly in their area (the CAA has clearly been the face of CFS in the political arena for the last 20+ years), and gets so complacent in its ways that once a legitimate competitor arrives (WPI) instead of adapting to a changing environment it hunkers down further into its stance to resist the tides of change.
Yesterday at 11:00am Comment Like Flag
4 people like this.
Joseph Chang
The truly successful organizations are always the adaptive ones, and in no time has this been more true than now, in a globalized hyper-informed world. You can choose to continue hunkering down and defending yourself with "but this is not our style" or you can choose to adapt to the changing needs of your target audience. You keep insisting that you're doing real research that excludes XMRV or retroviral pathology, but it's become transparently clear to some of us patients that this is a sign that you see WPI as a threat, not a partner.
Please realize that by partnering with WPI not just in word but by action, you will not lose your brand or market share, but you will extend it because you offer a plethora of resources and expertise that WPI does not. The giants always fall in a free-market society: that's evolution, but if XMRV becomes established with a pathological role in our illness, you will either be remembered for supporting the patient cause by doing what you can to aid XMRV research, or you will be remembered for foolishly carving out an obsolete style and identity. Ignore at your own peril.
Yesterday at 11:00am Like 4 people
Jennifer Spotila
The Association is not ignoring XMRV. Quite the contrary. In addition to all of the information we provide to the community, we are involved in XMRV research in a variety of ways. We do have a particular approach to advocacy, but it is not because of complacency, or fear of a competitor. WPI has a different mission, different strategy, and approach. This is a good thing! We all need to work together, bringing our unique expertise and approach to the table.
Yesterday at 12:37pm Like
Joseph Chang
These vagaries are exactly what I pointed out. You are denying your complacency by saying you have a different approach. The WPI is focused on defending the results of its published retroviral study while you're focused on defending your style. Do you not see the problem here?
You are saying you're involved in XMRV research but I have yet to see any specific information on funding nor intent to fund specific researchers or collaborate studies.
I repeat: results speak louder than words. When we see specific plans to fund XMRV there will no need for all this posturing. Your constituency is aghast. I don't mean this in an offensive way whatsoever, but realistically if you were a publicly listed company and we were your shareholders, we would've demanded a different approach that is based on results-oriented advocacy and thorough investigation of retroviral pathology. Don't you understand? The board of directors is supposed to act on behalf of the organization's full assembly (us patients), not decide in lieu of us what the right approach is. .
Yesterday at 2:53pm Like 5 people