First, I ‘d like to congratulate the newly appointed committee members. The patient community is particularly excited about the addition of Dr. Jose Montoya, a true ME/CFS expert with crucial clinical and research experience in our disease, something HHS committees desperately need a lot more of.
I also would like to thank the committee members who recently rotated off CFSAC. I want to dedicate my comments to advocate extraordinaire, Eileen Holderman, the outgoing patient advocate. Eileen has not asked me to make the following comments nor is she aware of them. She has never sought the spotlight for her countless contributions, having turned down many offers for interviews and feature stories. She is not in this for the glory. In fact, few are aware of her many efforts and she rarely gets credit for her hard-hitting and strategically smart advocacy.
Despite being quite sick with ME/CFS, Eileen is a force of nature. Her experience, intelligence, dedication, professionalism, hard work, strength of character and strong relationships with researchers, clinicians and advocates make her easily the most effective advocate of our time.
I have been in awe of, and inspired by, Eileen’s unshakable and unparalleled integrity, especially in the face of public and behind-the-scenes hostility and palpable lack of respect from HHS. When she went public last year with intimidation attempts by HHS, she was brushed off without an adequate investigation or even as much as an official response to her from Dr. Koh, Assistant Secretary of Health, let alone an apology or assurances of refraining from further intimidation on the part of HHS. Eileen cannot be intimidated nor can she be co-opted and that is crucial for effective advocacy that does not sacrifice the good of the community for personal gain. Eileen is not interested in financial favors, seats at tables of rigged games, rubbing elbows with the perceived powerful, prominence or anything else that is so often wrong with advocacy.
Three minutes are not nearly enough to go into any meaningful detail. But remember, Eileen called out HHS, on the record, for hijacking CFSAC’s recommendation and hiring the IOM. She has been unflinching in her opposition to the IOM effort. Eileen is the one who has continually reminded this committee that its shameful practice of calling our disease “chronic fatigue” is unacceptable and unscientific, sadly to no avail for the most part. We have to thank Eileen for the inclusion of the Canadian Consensus Criteria in this committee’s recommendations at the last meeting. She made her motions so swiftly that HHS was unable to mount enough opposition. Ironically, it probably would have been easier to shut down Eileens’ effort if the meeting had been in person instead of a teleconference with slides.
I look forward to seeing a lot more from Eileen in the future. This community is blessed to have her and owes a tremendous debt of gratitude to Eileen Holderman! Thank you, Eileen!