CDC/CFSAC BLOGS #2
International Workshop – Clinical Management of CFS
The aim of this workshop (to be held summer 2009) is to establish a collaborative international consortium of investigators who will present and discuss evidence- and practice-based findings related to the treatment, and management of CFS. CDC’s Five Year Strategic Draft Plan – May 2009
This weekend, Labor Day, marks the traditional ending of summer in the US. It will also mark the first promise broken of the CDC’s Five Year Strategic Draft Plan. Six months ago Dr. Reeves promised to hold an international conference on the management of chronic fatigue syndrome (ME/CFS) in the summer of 2009. That was the last we heard that project. (Which suggests that we’d be lucky to get that conference in winter of 2009. Can anyone hear summer of 2010?)
Its even a little worse than that; Dr. Reeves has been promising to hold this conference for several years now and admitted during a recent CFSAC meeting that it was long overdue. The CDC fully agreed that the program has not been communicating or collaborating with the research community and promised to do better. Yet in their first opportunity to demonstrate that the words on the strategic plan for more than just words on a paper they laid an egg.
Business As UsualOne might think that given the almost overwhelmingly negative response from the patients, support and professional groups that the CDC would at least make some effort to appear to honor their plan; that if they were going to go back to business as usual, as many suspected, that it would at least take them a little while to do. But it was back to square one all over again. The new leaf the program was going to turn over is as dry and dessicated as the old one.
Some people with contacts in the CDC has suggested the plan was always a show; that Dr. Reeves never intended to honor it, that it changed little anyway, and that as soon as the clamor died down nothing would change. Indeed the plan itself – bloated with promises a program of Dr. Reeve’s size could never hope to accomplish – was hard to take seriously. The fact that the CDC entered the planning stage under a cloud of financial mismanagement yet produced a plan devoid of any financial elements suggested that the CDC isn’t listening anyway.
Programs operate this way only when we let them. Moaning and groaning about the CDC amongst ourselves alters nothing at the CDC. We’ve mostly been content to satisfy itself with lofting verbal projectiles that never come near their target. On October 29th, 30th, though, we have a chance to launch verbal bombs that will land right in the CDC’s camp. Allindications are we really have a chance to force change.
The Big Event: For the first time the patients, the support groups, our professional organizations and the research community is united in their call for change. On October 29th, 30th at the CFSAC meeting we have the chance to come together and produce a voice we’ve never produced before.
The CDC will present their Five Year plan for CFS. A senior CDC official will be there. IACFS/ME Board Members will be there. Researchers will be there. Patients need to be there as well.
Right now the CDC is turning a deaf ear to everyone who’s asking for change but the reed they’re standing on is getting thinner and thinner. I say let’s produce a roar that even the leaders of the CDC cannot ignore. This constellation of factors; patients, patient groups, professional organizations – will not likely come again. If there was ever time to seize the moment; that time is now.
M.A.D. (Making a Difference) About ME/CFS – Let’s make an indelible impact on that CFSAC meeting. A group has been set up on the Phoenix Rising Forums called M.A.D About ME/CFS that will focus on finding ways we can make an impact at that meeting.
(You need to register for the forums to join the group forums.aboutmecfs.org). You can find the group by clicking on the Community tab and going to Social Groups or by going to this URL http://phoenixrising.me/forums/group.php?groupid=4.)