My mailbox received a special notice today from our supposed to be national advocacy organization. I mean, I am not american, I am canadian. But still. They were supposed to be the leaders, the protectors, the supporters of all of us, the lobbyists and the people to trust they will lead us in the right direction.
I am talking about the CFIDS Association of America.
And I am very sad to report that they did none of that.
You can fnd the notification from Kim McCleary here: Putting Research First
Here is Mrs McCleary quoted:
"Recognizing our resources were spread too thin, our Board undertook an intensive strategic planning process to assess where the Association could make the greatest impact. The outcome? Our strategy to “stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.” We went to work immediately to implement this shift in focus, but what we didn’t do well was explain these changes to supporters and the larger community.
I take full responsibility for the confusion the inadequate communication about our strategy and focus has created within the community, and outside of it. With an expanded grants program to oversee, a new research network to foster, and the urgent opportunities created by research on XMRV and MLVs, we erred in doing the work without taking the necessary time to talk about our shift in focus. Now the lack of understanding about our organization has prompted questions and criticisms, and we find that we have fallen far behind the curve in trying to convey what the CFIDS Association of America is today. I extend sincere apologies for this breach of understanding and trust."
There is more to the message. But the flavor I get, and I may be wrong on that, is...
-I'm sowwwy... we won't do it again...
-Please forgive me, I am paid 180 000$ a year to admit that kind of mistakes we have done, and I am not going anywhere.
-"Our ressources are spread thin"... Yes, because you are losing the community's confidence and haven't done anything about it, and also because you are paid 180 000$ a year which takes away from research and advocacy money. Also... how about that 80 000$ faces of CFS picture tour that you did? Did that really help?
-What you are really saying, Kim, is you are walking away from patient advocacy and concentrating only on research. What I want to know is... is it really worth paying say...8-10 people to coordinate research and research money, when a not for profit institute like WPI could do it more effectively with less staff?
-Are you also saying that you will not speak publicly again on our behalf, because the last few press releases were not really successful. perhaps even harmful?
-The message is... we're not really good at patient advocacy, so let's do research. Does that mean that patients are not deserving of a body that focuses on advocacy for ME/CFS, and that does a good job at it, like AIDS advocacy, or MS, or ... fill in the blank?
I think this e-mail has been a very sad turn of event, in my opinion, looking at the whole history of CFIDS Association of America. It seems to me that things started to stall seriously from the mid 1990's.
What is needed, is someone with back bones. Patients have been stood up for decades now. We need highly influential people, someone that will make a difference NOW, not in 15 years. We need changes now. The time is now.
And while I'm at it... CFIDS name is retarded. No one calls it that anymore. Not that CFS is any better. But part of the advocacy is advocating for a better name for our disease. Oh, I forgot, you are not advocating for us anymore. Then I would suggest you lose the "association of America" too.
There has been a petition going around lately, to ensure that CFSAC, NIH and the CDC know that CAA do not represent me and do not speak for me. I have refrained from signing this petition. However today, I think I will sign it, because it is true, you inside voice is not representing me either.
Link to the petition
Khaly's blog post: CAA and advocacy, a guest commentary