I will be posting a summary of what we learned (or didn’t learn) at last week’s CFS Advisory Committee meeting, but one incident requires detailed examination. Towards the end of the second day, conflict erupted between several committee members, allegations were made, and no resolution was reached. This incident has been discussed on forums and in emails, and has the patient community understandably upset. There are some inaccuracies circulating, and the whole thing needs to be sorted out.
I want to start with my summary of what happened. There is no video or transcript available yet. I was taking notes as fast as I could, but I want to emphasize that my reconstruction is not a transcript. I will make any necessary corrections once the video comes out. In the meantime, this is my best understanding of what happened.
- Steve Krafchick raised the issue of the committee’s October 2012 motion on the case definition, and that the purpose was to put the Canadian Consensus Criteria in place as an interim measure while other definition work moves forward.
- Dr. Nancy Lee said there had been a great deal of controversy in subcommittee calls and there was no time to revisit it now. NIH’s Evidence Based Methodology Workshop will not produce a research case definition but will be a next step. They (DHHS) are now pursuing methods for clinical definitions, but it shouldn’t be discussed now or there will be no time for anything else.
- Eileen Holderman and Dr. Mary Ann Fletcher both interrupted Dr. Lee, and Dr. Lee and Dr. Gailen Marshall both said they could not interrupt. Dr. Lee then repeated that the Evidence Based Methodology Workshop will provide the next place to go for the research definition and that they (DHHS) are actively pursuing options for a clinical definition.
- Dr. Fletcher said that Dr. Susan Maier of NIH had said the process would take two years. Dr. Maier interjected that she strongly disagreed with that characterization. Dr. Fletcher continued that the committee wanted to have a meeting of the experts and take the Canadian Consensus Criteria as a starting point.
- Dr. Marshall recognized Ms. Holderman, saying she had three minutes to speak. Ms. Holderman said this has been a big point of contention in the subcommittees and it deserves more than three minutes. Dr. Marshall then told her she had two minutes. Ms. Holderman responded that she would take as much time as she needed. Dr. Marshall said she was out of order
- Ms. Holderman then stated that she and two other committee members have been intimidated by the DFO (Dr. Lee). She said she is now afraid. There have been unfounded accusations against her but she has done nothing wrong. She said that the DFO has been calling committee members and intimidating them, to the point where some have called lawyers.
- Dr. Fletcher said that she is one of the committee members that is under threat of ejection for expressing her views. (The third committee member allegedly intimidated never spoke out)
- Dr. Maier said that it is very difficult for her to serve on the committee when people accuse her of not helping or of providing erroneous information. She said she has worked every weekend since February in order to do her job and serve the committee.
- Mr. Krafchick then said that what Ms. Holderman said was disturbing and we need to get past it. He then repeated that the most critical issue is an interim case definition while other work goes forward. Dr. Susan Levine agreed with him and said she is hopeful that the NIH workshop will elucidate this.
- Dr. Marshall then asked everyone to take a deep breath, defuse things, and finish their work. Nothing more was said about the alleged intimidation.
Many people in the patient community are leaping to conclusions based on this exchange. But I am disturbed by what we do not know: Who is the third committee member allegedly intimidated? What form has the alleged intimidation taken: phone calls, emails, face to face? Who allegedly did the intimidation: Dr. Lee, other HHS staff members? Many people are repeating that Eileen Holderman said that lawyers had done the intimidating but that is definitely NOT what I heard. When did these conversations take place? Did someone actually tell Dr. Fletcher she was going to be ejected for expressing her views? Who and when? What are the allegations of unprofessional conduct that have supposedly been made against Eileen Holderman? We don’t have any of this factual information. Frankly, this information is critical to having an accurate informed opinion on the matter. No one should be intimidated for expressing their views, but is that what happened in this case? I don’t think we have enough information to draw final conclusions.
I was also disturbed by Dr. Marshall’s silence. It would not have been appropriate to try and address these allegations in open session. But I do think it would have been appropriate and helpful if Dr. Marshall had acknowledged the seriousness of what Holderman and Fletcher said, and promised to look in to the matter. There must be a formal process at HHS for dealing with complaints from advisory committee members against DFOs. If any committee members have consulted attorneys, perhaps the process is already underway. But in my opinion, it would have been appropriate and professional for Dr. Marshall to acknowledge what was said and promise to investigate it. These are very very serious allegations, made on the record. There needs to be a formal examination of some kind.
What troubles me – beyond anything that was said or not said – is what this reveals about the committee itself. Some members of this committee feel intimidated or threatened for expressing their points of view. Regardless of whether an attempt was actually made to intimidate them, that is how they feel. The deliberations of this committee are dysfunctional if every member does not feel able to express the expert opinions that qualified them for service on the committee. How can this group work together effectively and productively, one or more members feel intimidated or at risk?
I sincerely hope that airing these allegations in public leads to the conversations that are clearly needed to heal this problem and move forward. For that to happen, the leadership of the committee will have to work together to not only resolve the allegations but create a functional environment for discussion and deliberation. Each member of the committee needs to take responsibility for making that happen. And if that doesn’t happen, all the talk in the world won’t make this committee’s work functional and productive.