By Lisa Petrison
Summary: This blog includes the text of a letter to HHS Secretary Kathleen Sebelius, asking that Dr. Nancy Lee be replaced with another more suitable individual as the Designated Federal Officer for the CFS Advisory Committee (CFSAC). Dr. Lee has repeatedly and inappropriately attempted to intimidate members of our community into silence about issues of importance to them and also has demonstrated that she does not even have the ability to organize a successful public meeting for our disease. Information on how others can convey their own displeasure about this matter to Secretary Sebelius is provided. Space will be available on this blog for those writing letters to Secretary Sebelius to share them with the ME/CFS community.
On Wednesday, December 11, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to the Department of Health and Human Services (HHS) held its semi-annual meeting. The charter of the CFSAC states the following:
>The Committee shall advise and make recommendations to the Secretary, through the ASH, on a broad range of topics including (1) the current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve-the quality of life of CFS patients.
Meetings of the CFSAC are the only usual occasions in which ME/CFS patients and advocates are invited to share their experiences and concerns with the U.S. government. In the past, the meetings were held live over a period of two days, with live video available for those unable to attend. This winter, the meeting was held as a five-hour telephone conference, with slides from non-patient presentations available for viewing online.
While there were many problems associated with the meeting, the low point came in the comments from the CFSAC government head (“Designated Federal Officer”), HHS Deputy Assistant Secretary Dr. Nancy Lee. After failing to answer most of the committee members’ questions about the IOM contract in any sort of informative way, Dr. Lee attacked the ME/CFS community for protesting the IOM contract and worked to intimidate them into being silent.
>I would like to close my remarks just to say that CFSAC members and ME/CFS advocacy had a true opportunity to contribute important information, perspectives and recommendations. I already know this and am happy about it.
>I’ve seen so much vitriol and personal attacks in email and blogs around the IOM study. I don’t see how this will be constructive going forward, given the opportunity before the ME patients and families.
>Everyone I know working to make the clinical diagnostic criteria a reality has good intentions and wants to make things better for ME/CFS patients. Implying that IOM staff or committee members don’t have good intentions will not be helpful. Will not be helpful. And, it could backfire.
>I had patient advocates apologize to me in private, when this happens in a public meeting or blog or email.
Dr. Lee then encouraged individuals in this community to monitor other people’s public speech and to call them out on it if anyone suggested that those involved in the creation of the definition had “bad intentions,” though unfortunately the CFSAC-supplied transcript did not supply the text for this remark.
CFSAC member Eileen Holderman immediately spoke up in our community’s defense:
>That was an indictment and a criticism of the advocacy community, and I need to respond to that on behalf of the advocates. I can’t let that stand.
>This is a _highly_ contested issue. But for the most part you have seen constructive criticism — experts’ letters, advocates’ letters, petitions, the congressional meetings, the demonstration, the proper letters, the Twitter campaign, media articles. So I am standing up for the community, saying thank you to the community for all they are doing.
Especially following statements last spring by CFSAC committee members that Dr. Lee had attempted to intimidate them into not voicing their opinions, this kind of behavior is not acceptable. A government official who acts this way toward members of the ME/CFS community who are properly and appropriately expressing their views about public policy issues — and who also apparently is incapable of successfully organizing a simple public meeting — should not be the Designated Federal Officer for our disease.
Thus, I have sent a letter (text below) to HHS Secretary Kathleen Sebelius asking for the replacement of Dr. Lee with another more suitable individual.
Of course, this matter will be taken much more seriously if many people write letters (even if just one sentence each) to Secretary Sebelius about it. Space on this blog is available for those wanting to share their own letters to Sebelius with the ME/CFS community.
Here is the list of addresses where I sent my own letter:
Secretary Kathleen Sebelius: Kathleen.Sebelius@hhs.gov
Dr. Howard Koh (Assistant Secretary for Health): firstname.lastname@example.org
Dr. Wanda Jones (Principal Deputy Assistant Secretary for Health): Wanda.Jones@hhs.gov
Jennifer Cannistra (Advisor to Secretary Sebelius): Jennifer.Cannistra@hhs.gov
President Barack Obama: email@example.com
Dr. Harvey Fineberg (President of the Institute of Medicine): firstname.lastname@example.org
Many people have already used Twitter to tweet their concerns to Secretary Sebelius and Dr. Koh. Here are some sample tweets:
@Sebelius Disappointed at #CFSAC head Dr. Nancy Lee’s attack of CFS patients at Wednesday’s meeting. She should be replaced. #mecfs #hhs
@HHS_DrKoh Disappointed at #CFSAC head Dr. Nancy Lee’s attack of CFS patients at Wednesday’s meeting. She should be replaced. #mecfs #hhs
@Sebelius Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack
@HHS_DrKoh Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack
The links to blog posts mentioned in the letter are at this link. (If you get a black screen, select “Download” and you will be able to read the document.)
Thanks much to Angel Mac for providing the transcript from the CFSAC meeting, and to Gabby and ME CFS Forums for compiling the blog links.
Dear Secretary Sebelius,
I am writing to bring to your attention a number of unfortunate issues that have recently become associated with your Chronic Fatigue Syndrome Advisory Committee (CFSAC) and its current Designated Federal Officer, Deputy Assistant Secretary Dr. Nancy Lee.
First, you should be aware of the many problems with the December 2013 CFSAC meeting. In the past, this has been a live two-day event held in Washington D.C., with live and recorded video available for those who could not attend. This time, the format was changed to a webinar consisting of two half-days (scheduled for December 10-11). A snowstorm forced the cancellation of the first day; despite widespread protests from advocates that the whole event be rescheduled, the second day was held as planned. Although it was stated that HHS “hoped” that an additional webinar would be conducted later this winter, no definite plans of this were announced.
That five-hour event involved a wide range of problems. The audio component was available only via telephone rather than over the Internet, meaning that it was inaccessible to the many patients whose meager financial resources prohibit them from having unlimited cell phone minutes or a landline; other patients were unable to listen because of physical difficulties related to being on the telephone for long periods of time. The video portion of the program, broadcast separately, consisted only of presentation slides and choppy transcript, was very difficult for patients to follow, and was plagued with many technical problems. Patients who had been scheduled to speak on the first day were denied the chance to give their presentations at all; those scheduled to speak on the second day had their presentations shortened to three minutes from five, forcing them to rewrite their scripts only an hour before the session began. In addition, although patients were encouraged to submit video testimonies to be played during the event, only the audio component ended up being broadcast.
Even more problematically, during the meeting Dr. Lee attempted to inappropriately intimidate the ME/CFS advocacy community into silence with regard to its protests of the IOM contract, stating in part: “Everyone I know working to make the clinical diagnostic criteria a reality has good intentions and wants to make things better for ME/CFS patients. Implying that IOM staff or committee members don’t have good intentions will not be helpful. Will not be helpful. And, it could backfire.” (The full comment by Dr. Lee and a response by CFSAC member Eileen Holderman follows this letter.)
It is inappropriate under any circumstances for an official of the U.S. government to attempt to silence a group of citizens who are expressing their opinions about public policy matters. That is especially the case here, since the protests against the IOM contract by this community (including the letter sent to you by the experts who know the most about this disease) have been consistently civil and in accordance with accepted ways in which citizens are generally allowed and encouraged to interact with policymakers on issues of importance to them.
Attached to this email is a list of all of the blogs from members of the ME/CFS community discussing the topic of the IOM contract since it was first revealed at the end of August. In them you will find questions about whether the government truly has the best interests of ME/CFS patients as a goal and opinions that people who do not have experience treating or researching this disease should not be involved in creating definitions for it. “Vitriol” and “personal attacks” (as Dr. Lee described our community’s efforts) are not present — though even if those things were present, it would be no excuse for Dr. Lee to suggest to us that those comments might “backfire” in terms of the government’s policy decisions with regard to the definition of the disease. The definition should be based solely on the scientific evidence and on the knowledge of those experts who are familiar with the disease, and should not be influenced by anyone’s desire for retaliation with regard to advocates’ protests.
This recent inappropriate statement by Dr. Lee follows allegations by two of the CFSAC members that Dr. Lee attempted to intimidate them prior to the May 2013 CFSAC meeting, suggesting to them that they could be removed from the committee for expressing a point of view. Here is a summary of the events that transpired and their unsatisfactory resolution in a statement by Dr. Howard Koh on November 25, 2013:
Dr. Lee has demonstrated in a variety of ways that she is unsuited for the responsibility of being the Designated Federal Officer for CFSAC. She seems unable even to organize a successful public meeting, and she has repeatedly demonstrated the tendency to attempt to inappropriately intimidate members of our community into silence. I therefore request that she be replaced, either with our former Designated Federal Officer Dr. Wanda Jones or with another suitable individual.
So that you and your staff may more easily evaluate this situation, a list of links to recent blog posts from our community about the CFSAC and about Dr. Lee also is in the attachment.
Thank you very much for your attention to this matter.
Lisa Petrison, Ph.D.