The following e-mail was sent by Eileen Holderman to Dr. Unger (CDC)
Dear Dr. Unger:
Thank you for participating on my Subcommittee Teleconference last Friday. I hope you found Dr. Chia's presentation on "ME/CFS and Enterovirus," and the subsequent discussion with the invited advocates and members of the press interesting; I look forward to you sharing your impressions of the Teleconference with me.
On another note, and my primary reason for writing, is to let you know that to commemorate May 12 International ME Awareness Day, I wrote a thank you correspondence to the CFSAC CDC Web Site Review Panel Members for their contributions toward improving the CDC Web Site. As you know, for the past 4 years, I oversaw and participated on the Review Panel because the content of the CDC Web Site has been of critical concern to the ME/CFS community. After I sent my correspondence, I decided to also send a thank you letter to you, Dr. Belay, and Mr. O'Connor for your time and efforts in addressing my/the Review Panel's concerns.
As I prepared to write my thank you letter, I checked out the CDC Web Site so my final remarks would be accurate. To my surprise and dismay, I noticed CDC created a new web page to feature May 12 Awareness Day. I say 'surprise' because there was no mention of it to me or my Review Panel; and there was an opportunity to mention it as recent as last Friday during my Subcommittee Teleconference when I asked if there were any announcements from HHS - you will recall that my inquiry was met with an awkward silence. Had CDC communicated to me that they planned to feature May 12 Awareness Day with the erroneous content of the CDC Web Site, I would have objected. Furthermore, our national and international ME/CFS and FMS organizations do an exceptional job of raising awareness for these diseases so CDC need not undermine those efforts. I appeal to CDC to remove the new web page as advocates have already begun to voice their justified criticisms of the content.
For the past 4 years, my Review Panel and I have made countless suggestions to improve the CDC Web Site. While CDC did make changes to the general sections of the web site, my opinion is that most of the changes were cosmetic, not substantive. The CDC Web Site still resembles a web site for the condition of chronic fatigue instead of a web site for the neuroimmune disease of Myalgic Encephalomyelitis (aka CFS).
Below, are my specific (though not my complete list of) recommendations to improve the CDC Web Site that need to be, but have yet to be, implemented:
* remove the Resource Guide
* remove the Toolkit
* remove the expired and needless Emergency Preparedness Webinar
* remove the expired CDC/Medscape video online course
* remove all references to the Oxford Case Definition in the CME online courses
* remove references to CBT
* remove references to GET
* remove references to St. Bart's and NICE Guidelines
* remove all links to CDC psychosocial published studies on ME/CFS
* remove all implications both subtle and overt to ME/CFS as a psychogenic and/or a fatigue "condition"
Hopefully, the CDC Web Site will get on board with our 50+ ME/CFS experts and adopt the CCC in their CME courses and in all of their content, and reference the 5000+ biomedical papers on ME/CFS, and offer links to the IACFS/ME Primer and the ME ICC Primer and a section on Pediatric ME/CFS. The CDC Web Site needs to reflect the serious, disabling nature of this neuroimmune disease affecting nearly one million American men, women, and children and 17 million worldwide.
Again, thank you for the time and consideration you, Ermias, and John have given me and the Review Panel in regard to improving the CDC Web Site.
cc: Dr. E. Belay, Mr. J. O'Connor, ME Community