Eileen Holderman, CFSAC Comment – January 13, 2017

Good morning to the Committee Members and to the stakeholders.

I’m Eileen Holderman, an advocate for ME, GWI, and other neuroimmune diseases.

I formally served as the Patient Advocate on CFSAC and chaired 2 subcommittees – one was for the review and improvement of the CDC Web Site.

While I believe advocates’ efforts should always be ongoing to improve Government policies, I am dismayed when I see efforts that are redundant and seemingly futile. Specifically, I am referring to the efforts advocates are asked to make in regard to the TDW for the improvement of the CDC Web Site, not only because of my subcommittee’s work for 4 years, but because of the efforts of all my predecessors.

Today, I will read into the public record excerpts from an open letter I wrote to Dr. Beth Unger of CDC, at the time I completed my 4 year term on CFSAC.

Here are excerpts, which unfortunately, still apply today:

Dear Dr. Unger:

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.

Best regards,

Eileen Holderman                                                                                                                                                          

Thank you for the opportunity to speak today and I wish all of you well.

 

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