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.


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21 Responses to Fireworks

  1. Rivka says:

    thank you for this column. this is very very concerning. — rivka

  2. Kati D says:

    I am very sure I heard Eileen saying 3 members were coerced into saying that some past recommendations were completed when in fact they are not.
    She also said that she had made an oath by serving this committee (implying she would lie if coerced to the above)

    thank you for writing this, Jennie. Very, very disturbing.

    • Jennie Spotila says:

      We need the videos, because I do not remember her saying that. It’s not in my notes. I was writing as fast as I could, but I’m sure I didn’t get everything down.

  3. Sasha says:

    Thanks, Jennie – it was a very upsetting exchange to see. The situation needs to be resolved.

  4. Sue Jackson says:

    Thank you, Jennie – as always – for explaining things in a clear way. I missed watching the second day of the meeting to take Jamie to see his Lyme doctor, but I;ve been hearing all sorts of anger and frustration flying around the web. Thanks for explaining what happened. I look forward to watching the video.


    Live with CFS

  5. POTSNJ says:

    Why can’t the canadian definition or international consensus just be adpoted already? Why is this is so difficult? Some of our most troubling symptoms, the ones that define the illness only appear in these later definitions. Can’t definitions change as we learn more about disease? Who decides and what are they waiting for? I’ve only recently started following some of these meetings, so I don’t know all the issues, but is there a simple answer to my question? Who is standing in our way?

  6. Sing says:

    I really like your point about the need for a formal process to examine these allegations about threats. Frankly, I have never felt that Dr. Nancy Lee was doing a good job in her role but has contributed to dysfunction and difficulties during her tenure with this committee.. What a comparison with the excellent job Wanda Jones did. I hope that formal steps are taken to address her actions and inactions, and hopefully to seek her removal.

  7. Lori Chapo-Kroger says:

    Thank you Jennie for giving an accurate account as possible. Wonder if anyone in the community recorded the exchange? An e-card of support has been created for Eileen. Everyone is invited to sign the card. It will be delivered to Eileen Holderman on June 7, 2013.

  8. Matina Nicholson says:

    Thank you so much Jennie. Actually I think Dr. Marshall only gave Eileen 2 MINUTES to speak! You are correct that there are many things going on behind the scenes. I heard alot while I was at the mtg from some committee members and it was very frustrating to hear. I don’t want to go in to it because I was just at “the right place at the right time” to hear the comments. But, it aligns with the “Fireworks” that went on. I am so proud of Eileen and other committee members that stood up for our community! Kudos to all. : )

  9. pat fero says:

    I am SO interested in this reactionary response to discussion of the major problem patients face. That kind of reaction and restriction of even discussing the case definition or any topic makes me think we hit a nerve. 30 years later, millions and millions of dollars have been invested at NIH and CDC. I know science is slow..replicate, replicate, but something is going on here. GOOD scientists are not sloppy. Using another person’s analogy…simply put, the study of Macs could be apples or computers. Even a dolt like me can understand this. I mean…once the name CFS was created and millions invested, why would these public health agencies admit oops… OTOH..there are people sitting on this committee who are trapped inside the vortex…spinning out of control. Good people. Thanks J.

  10. dee says:

    Holy Unprofessional Batman.

  11. Valerie says:

    This was disturbing – along with the financial report presented by you, Jennie. I did leave the meeting (even with some technical difficulties I had) a bit more discouraged than usual. As a Canadian, I am happy to see discussion and different agencies involved in the U.S. We can only wish for such progress here. However, when the actions don’t meet the words, it is a different thing.

    There were some good points for me in the meeting. I always learn from patient testimony. I learned from the docs who spoke of their personal histories and interest in ME/CFS. It might have great value to share that with other doctors to inspire. As well, it was interesting to learn the toolkit is being revised….how, I don’t know yet.

    In the end, I left a bit discouraged and confused, but when I look at details, there are encouraging factors. In Canada, remember, we can’t even get acknowledgement we exist, never mind money or discussion. So one has to remember that. P.S. It was also full moon and a solar event….the crazies were out in everyone.

  12. TY for the instant recap. Yes, this conduct is very disruptive to moving forward.

  13. Charlotte says:

    Thank you, Jennie, for providing this summary. I was not able to watch this exchange and your write-up is the best description I’ve come across. I’m with you — we need the facts.

  14. floydguy says:

    fyi – I have a video/audio recording….Personally what I find disturbing and what I think the crux of the matter is that the committee and most “experts” want to see a tightening of the criteria to at least CCC. Unger and others have tossed out an enormous boat anchor without explaining why they want to continue the status quo of a mixed patient population. We’ll never get anywhere if the threshold is going to be a definitive peer reviewed study in the New England Journal of Medicine. After all it’s tough to get there when NIH refuses to spend money on research!

    I’d also like to add the frustration of Dr Fletcher who kept saying that they they can’t get grants approved. This was after Maier kept saying send in your applications. This is also a very fundamental conflict. It seems nobody is interested in spending the time in preparing grants when they aren’t getting approved. And to make it worse the bureaucracy keeps telling them to send in more applications that presumably will be rejected.

    This was bureaucracy 101. The process is more important than the outcome. When it came time to work things out and possibly move forward Marshall bailed. So much of the meeting was complete nonsense. It is frustrating to see discussion of core issues swept under the rug so they could move on and talk about irrelevant issues.

    • Jennie Spotila says:

      Floyd, can you send me the video recording of this portion of the meeting? Nothing up on the official site yet.

  15. floydguy says:

    Sure what is your email address? Is audio only okay – size will be a problem otherwise and I don’t have the video portion for the whole clip.

  16. floydguy says:

    Jennie – the file is still too large to send. I am uploading to mediafire. I compressed using itunes (AAC file). You can use itunes or VLC to play. I’ll send a link when it’s done uploading (still large at 193 mb)

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