April 9, 2019 – email from Eileen Holderman to Secretary Azar
Dear Secretary Azar:
Attached, please find an open letter written to you by me and a fellow advocate.
We are sharing this open letter on social media with the Myalgic Encephalomyelitis (ME) community, along with a call to action, to improve the lives of a million American men, women and children and millions worldwide with ME.
Please read our letter and reply via email about our request for a meeting with you.
Sending best wishes,
Eileen Holderman
ME activist
former member CFS Advisory Committee (CFSAC)
Open Letter
April 15, 2019 – email from Eileen Holderman to Secretary Azar
Dear Secretary Azar:
On April 9th, I sent you an email with an attachment of an Open Letter. I have also mailed the hardcopy of the Open Letter to your office.
Please confirm receipt of my email and let me know via email, when you will meet with me and representatives from our Twitter initiative (#TeamTweet Storm) for patients with Myalgic Encephalomyelitis.
Sincerely,
Eileen Holderman
ME activist
former member Chronic Fatigue Syndrome Advisory Committee (CFSAC)
April 24, 2019 – email from the office of Secretary Azar to Eileen Holderman
Dear Eileen Holderman,
Thank you for requesting a meeting with Secretary Azar. Your request is now in our system, and you will be contacted as soon as we know more about the Secretary’s availability.
Our Scheduling Office receives a high volume of requests and considers each one individually. We understand that the time that process takes may create uncertainty in your planning, and we greatly appreciate your patience. I or someone from our team will be in touch regarding your invitation. If your event has a deadline by which you must have an answer regarding the Secretary’s participation, please let us know.
Again, thank you for your interest in meeting with the Secretary. We look forward to speaking with you in the future.
Sincerely,
Beth Tignor
Department of Health & Human Services
April 24, 2019 – email from Eileen Holderman to the office of Secretary Azar
Dear Ms. Tignor:
Thank you for your reply to my/our request to meet with Secretary Azar.
I/we look forward to speaking with you at your earliest convenience to arrange a meeting.
Meanwhile, I will share the update with the Myalgic Encephalomyelitis community.
Sincerely,
Eileen Holderman
April 24, 2019 – email from the Office on Women’s Health to Ms. Holderman and Klein
Dear Ms. Holderman and Klein,
Thank you for your e-mail to Secretary Azar regarding the Department of Health and Human Services (HHS) citing myalgic encephalomyelitis (ME) as systemic exertion intolerance disease (SEID). Secretary Azar has asked me to respond on his behalf.
As you note, the Institute of Medicine (IOM), now the National Academy of Medicine was charged with recommending a clinical case definition for ME/chronic fatigue syndrome (CFS). The convened nationally and internationally recognized experts reviewed the data and consulted with stakeholders prior to issuing their report. The case definition you favor was included in their review.
After receiving and reviewing the 2015 IOM report, the HHS agencies involved in the former Chronic Fatigue Syndrome Advisory Committee (CFSAC), agreed to use the recommended clinical case definition from the 2015 IOM report. However, because CFSAC did not agree to adopt the SEID name, HHS agencies usually continue to use ME/CFS because that was the name last recommended by CFSAC. HHS continues to support work to address the diagnosis in ME/CFS such as the Centers for Disease Control and Prevention (CDC)/National Institute of Neurological Disorders and Stroke Common Data Element Project.
I believe that your best venue for relaying your messages is through the CDC and National Institutes of Health stakeholder engagement activities. I understand that you participate in the stakeholder calls and for that, I thank you.
If you would like to pursue an appointment with the Secretary, please send your request to meet with the Secretary to scheduling@hhs.gov.
We appreciate your commitment to this cause and protecting the interests of the men, women and children affected by this disease.
Respectfully,
Dorothy Fink, MD
Deputy Assistant Secretary for Women’s Health
Director, Office on Women’s Health
Office of the Assistant Secretary for Health
U.S. Department of Health and Human Services
May 8, 2019 – email from HHS to Eileen Holderman
Hello,
Thank you for your request for Secretary Azar.
The Secretary values every request that he receives. However, due to the constraints of his schedule and the volume of inquiries, some cannot be accommodated by him personally. He has asked for the IEA office to follow up with you regarding your request. They will be in touch regarding their availability. Thank you again for reaching out to the Department of Health and Human Services. We appreciate your understanding, and hope you have a great day!
Best,
Shelly
Shelly Watson
Support Staff Assistant
US Department of Health and Human Services
Scheduling and Advance
200 Independence Ave., SW
Washington, DC 20201
May 14, 2019 – email from Eileen Holderman to Secretary Azar
Dear Secretary Azar:
I am writing to respectfully reiterate a request for a meeting with you pertaining to Myalgic Encephalomyelitis (ME), a neuroimmune disease, which affects about one million American men, women and children and millions worldwide.
On April 9th, I emailed you an Open Letter (signed by activist Gabby Klein and me) requesting a meeting and explaining the urgent issues we wish to discuss and resolve with you, along with a petition with 6000 signatures. We have shared our Open Letter to you widely on social media and it garnered a great deal of attention.
On April 24th, I heard from Beth Tignor at your office that your office was “looking forward to speaking with [me] in the future.” I sent an email reply that I looked forward to hearing from you.
However, we have since received an email from the Office on Women’s Health, referencing our Open Letter to you and advising that we contact CDC, NIH and/or write to a general mailbox.
Then on May 8th, I received yet another email from HHS, Shelly Watson, again referencing our Open Letter to you and stating that the IEA office will follow-up with me regarding my/our request.
Because of the miscommunications and cross communications as to our request, we reiterate our request to meet with you to resolve the issues critical to the Myalgic Encephalomyelitis community; we again have attached our Open Letter.
For decades, HHS, CDC and NIH have neglected the vital needs of the ME community. Therefore, we ask to meet directly with you and look forward to your reply.
Sincerely,
Eileen Holderman
ME activist
former member Chronic Fatigue Syndrome Advisory Committee
May 31, 2019 – email from Gary Beck to Eileen Holderman
May 31, 2019 – email from Eileen Holderman to Gary Beck
May 31, 2019 – email from Gary Beck to Eileen Holderman
May 31, 2019 – email from Eileen Holderman to Gary Beck
Again, thank you for your reply, though it is disappointing I/we cannot meet with the Secretary.
Please clarify if the call Thursday is to arrange a meeting with you or are you proposing a phone conference instead of a meeting?
Eileen Holderman
May 31, 2019 – email from Gary Beck to Eileen Holderman
May 31, 2019 – email from Eileen Holderman to Gary Beck
I/we are not based in Washington, but with notice we wanted to meet in person because it would be more personal and productive.
Please let me know if that would be possible?
June 5, 2019 – email from Gary Beck to Eileen Holderman
June 5, 2019 – email from Eileen Holderman to Gary Beck
Dear Mr. Beck:
June 13, 2019 – email from Eileen Holderman to Gary Beck
June 13, 2019 – email from Gary Beck to Eileen Holderman
June 13, 2019 – email from Eileen Holderman to Gary Beck
Dear Mr. Beck:
Thank you for your reply.
Yes, we can meet with you on July 8th at 2pm. Please let me know your office address and phone number. I am providing my phone number below.
We look forward to our meeting.
Eileen Holderman
xxx-xxx-xxxx
June 17, 2019 – email from Gary Beck to Eileen Holderman
My number is (xxx) xxx-xxxx and the meeting will take place in the Humphrey Building (200 Independence Ave SW, Washington DC, 20002).
Gary M. Beck
Office of the Secretary | Intergovernmental and External Affairs
July 6, 2019, email from Eileen Holderman to Gary Beck
Dear Mr. Beck:
I am writing to confirm we will meet with you this Monday, July 8th, at 2pm at your office.
Looking forward,
July 6, 2019 – email from Gary Beck to Eileen Holderman
July 8, 2019 – email from Gary Beck to Eileen Holderman
Dear Mr. Beck:
Thank you for meeting with me and Gabby Klein in Washington.
We appreciate your time, the attention you gave our concerns and requests, your willingness to look into the issues we raised and your promise to get back to us with an official response.
We encourage you to review the materials we gave you in the binder: the Open Letter to Secretary Azar, the International Consensus Criteria (ICC), the International Consensus Primer (IC Primer) and the petition with approximately seven thousand signatures from stakeholders affected by Myalgic Encephalomyelitis (ME).
For over 3 decades, one million American men, women and children (and millions worldwide) have suffered the brutality of the disease and its devastating consequences on their lives. Additionally, the Department of Health and Human Services (HHS) has failed to provide patients with expert disease criteria, medical guidelines, education, proper name and code. Furthermore, HHS, paid for and is promoting (with the help of some organizations) yet another erroneous criteria and name – systemic exertion intolerance disease (SEID) – which will continue to harm patients with ME.
Therefore, we ask HHS to implement ICC, use the IC Primer to educate, use proper name, Myalgic Encephalomyelitis, and code (G93.3) and stop using SEID in all HHS programs.
We look forward to hearing from you and collaborating with you on our plan to implement the changes and policies we have called for.
Sincerely,
Eileen Holderman
Activist
former member Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Gabby Klein
Patient advocate
Relating to ME 