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!
So happy to see you on webcast at CFSAC, Jeannette. Thank you so much for advocating for us–and thank you for speaking of the many impactful efforts of Eileen Holderman with ME/CFS advocacy. We are absolutely grateful to Eileen!!
Thank you Jeannette for your tireless work on behalf of PWME, as usual your interventions are spot on.
Eileen Holderman is one of our treasures, what else can we add to what you’ve said about her?
Learning that Dr. Montoya was part of the committee made me smile from ear to ear, something that does not happen as frequently as I would like to these days …
Thank you, Jeannette, for making the trip to the meeting and sharing your comments. You and Eileen are both strong advocates, and I am so grateful for your work on behalf of patients. We are blessed to have you both!!
Thank you and Eileen from the bottom of my heart. When my phone was on silent from their meeting room from 2 pm to 3:26 pm, I was upset. The crazy irony is, I became ill 21 years ago today at 3pm. I was shut off from the life I would never know again. ME hit sudden and has destroyed my life. Being shut off on the phone line from HHS was apropos. When I heard Dr Fletcher ask why are we here, if not to advise? The room attendants started to applaud, my heart smiled. I was reminded after being “shut out” there are people that care, they just aren’t in HHS. If you are still there tomorrow please tell Dr Montoya, people on the phone were applauding his, and the others that realize this P2P is so disrespectful to our community.
I am wondering how we can get them to read their original charter? I thought it was Congressional appointed for advisory to Congress. If I am right, I want them to report to Congress and not DHHS. The lack of respect shown to the members of this committee is sad. The lack of urgency to our patient population is inhumane. Eileen never should have endured the disrespect, nor should we continue to either. The time and energy of the caring CFSAC members needs to be able to move us forward quickly. How did this fiasco of IOM and P2P start? Great question Dr Fletcher, even if I got the words wrong, I think I got your point. They know it is going like a steam roller unable to stop, but how did it start? Can we still make it stop? Who is responsible for turning our disease into a bigger circus? I just want to have some science funded research and to feel better! Make the P2P go away Dr Koh, tell me it isn’t so!
As always Jeannette, you speak so eloquently for many of us who cannot. Thank you for everything, and for such a beautiful and well-deserved tribute to Eileen.
YAY, Eileen, for your amazing work for our community. We are blessed to have you. And Jeannette, your work is also crucial to our survival. Thank you, to both of you, and to our many amazing and dedicated advocates! — Rivka
I did not know about Eileen’s stupendous contributions for those of us with ME/CFS, and I thank her so much for everything she has done, even while suffering from this illness herself.
She is a hero of our “movement,’ and is recognized by all of us — and someday, when we are all vindicated when causes and treatments occur, the wider world will acknowledge her role.
Thank you, Jeannette. What more can I say? Everyone who has commented said it all. They all took the words out of my mouth!
Thanks, Jeannette! Did somebody say Ed testified as well? Is his testimony somewhere I can read it?
Thank you, Jeannette. Thank you, Ms. Holderman.