My CDC

June 29, 2009

Posted by Cort Johnson

My CDC team is very different from the present one. My CDC is a true leader in this field; my CDC is at the hub of the ME/CFS research effort, my CDC interacts extensively to benefit all. My CDC is a lean and mean and innovative team that we can all be proud of. What exactly does my CDC team look like? My CDC team:

Interacts extensively with research community at large. Always on the lookout for new breakthroughs my CDC communicates frequently with all different aspects of the broad ME/CFS research community. My CDC doesn’t just support efforts like the Whittemore Peterson Institute – its on the ground floor assisting them to get off the ground. (My CDC would never be out of communication with a major project like the WPI. This CDC has never been in communication with them.) My CDC is a known and trusted hub of the ME/CFS research effort. My CDC builds a community rather than sits outside of one.

Is Lean and Mean and Efficient: recognizing that funding is low my CDC collaborates with different research efforts to maximize it’s resources. My CDC creates timelines and sticks to them. It elicits competitive bids for its projects. It pursues innovative low cost initiatives such as the CAMDA project. It recognizes that many researchers would love to work with it for free and uses them rather than ignores them.

My CDC Shares its Data and Its Knowledge Because That’s What Works: My CDC shares it’s raw data so that other researchers and most importantly the field and the patients can benefit. My CDC eagerly pursues collaboration. My CDC is collaborating with all the major players in the field from the WPI to Dr. Kerr to Dr. Klimas to the Dubbo Project. In one form or another my CDC is everywhere.

My CDC Knows How to Create A Definition That Sticks – My CDC knows if a definition will work before it lays it out because as a vital and respected part of the research community it knows that community(!). My CDC uses the expertise of the community to build a definition that works from the beginning. My CDC is not so insular that it wastes over five years of research efforts trying to build something it later learns Ithe community wants no part of.

My CDC Helps To Pull This Field Into Shape – My CDC seeks consensus to build a overarching research plan for ME/CFS. My CDC uses consensus to develop standardized testing measures to get this field on its feet and by doing so my CDC leverages its authority to create a new and stronger playing field for the ME/CFS research community. My CDC makes the entire field stronger.

My CDC Does Not Call A Disease that Disables 25% of its Patients “Unwellness’ – My CDC knows and interacts with the patients it’s studying; my CDC would never dream of trivializing this disease and the people it effects (again) by calling it ‘unwellness’.

My CDC Has the Respect of the ME/CFS Patient Community Because it Communicates with Them – My CDC recognizes that part of the job of controlling a controversial disease like ME/CFS is communicating with the patients in such a way that they feel like they have a partner. My CDC realizes that winning the patients trust is not an afterthought but is an important part of its mission.

Simply e-mail the CDC at CFSResearchPlan@cdc.gov to tell them what you want your CDC program to look like. You have until July 1st to do so.

7 comments

{ 7 comments… read them below or add one }

Laurel June 29, 2009 at 3:08 pm

LOVED this, Cort! Well said.

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Karl Baty June 29, 2009 at 4:01 pm

Well said!!

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Pat Sonnett June 30, 2009 at 9:37 am

Cort, this is fabulous. No one has put our wishes in writing any better than you just have. I want the CDC you’ve described here to be my CDC too!

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Diana June 30, 2009 at 6:35 pm

Glad I found your blog. 20 years of this crap from the CDC (and others) is enough to make me feel “unwell.”

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yogurt420 July 1, 2009 at 2:47 pm

Hi Cort,

I was look at this comment you made. “The CDC’s only major research project will use brain imaging techniques to assess the effectiveness of two treatments (CBT, Ampligen) that we already know are not the answer to ME/CFS; the program is not leading this field in innovation, it’s leading the field in picking up the pieces of other research efforts”

How do you know that ampligen is not the answer to alot of peoples problems with ME/CFS?

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Tom Kindlon July 2, 2009 at 10:50 am

Well done, Cort.

I decided to do my own submission. Amongst other things it includes information on 10 ME/CFS surveys including some data from the CAA’s 1999 survey. These
surveys show the high rates of adverse reactions associated with GET (and
CBT based on GET).

High rates of adverse reactions to treatments are usually taken very seriously but it looks like the CDC is going to start promoting GET and CBT based on GET more now. It’s quite long so is in two parts: http://tinyurl.com/TKonCDCsplans1 and http://tinyurl.com/TKonCDCsplans2 . If anyone wants to use the information to do their own piece, feel free.

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NTE July 10, 2009 at 8:09 pm

All I can say is “if only…”

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