Vincent Departs

Eagle-eyed Tom Kindlon posted on Twitter last night that Dr. Ann Vincent’s name has been removed from the CFS Advisory Committee roster. It appears that Dr. Vincent has resigned, although I have no information on when or why she may have done so. I’ve emailed Dr. Nancy Lee for more information and will share what I learn. (see update below) For now, I can try to put this change in context for you.

Dr. Vincent was nominated to the CFSAC by the CDC in October 2010 and appointed to the Committee in April 2011. She was midway through her four year term on the CFSAC. The focus of Dr. Vincent’s clinical practice and research is fibromyalgia and fatigue. Many advocates were critical of her appointment to the Committee because some of her publications suggest she ascribes to the psychosocial view of fibromyalgia and CFS. On the other hand, Dr. Casillas told me last year that he was forming a collaboration with Dr. Vincent and Dr. Jordan Dimitrikoff to look at a potential biomarker.

Last year, Dr. Vincent published a CFS prevalence study conducted in Olmsted County, Minnesota. The study was a retrospective medical records review that identified people who might meet criteria for CFS. Patients meeting the Fukuda criteria, and who had no exclusionary conditions, were considered to have CFS based on the information in the records. The study found a CFS prevalence of 71.34 per 100,000 persons, or 0.071%. This is much lower than other studies that have estimated the prevalence as 0.29% to 2.6%. Study design likely contributes to this wide variance, in part due to the strict exclusionary criteria applied. If Vincent’s study is correct, then the number of people with CFS in the United States is closer to 225,000. This is quite a contrast from one of the most quoted prevalence studies which estimated that approximately 1,000,000 people in the US have CFS. Also notable in Vincent’s study is that only 36% of patients had documented post-exertional malaise. However, this could be a result of doctors not knowing how (or whether) to assess for PEM.

You may recall that Dr. Jacqueline Rose resigned from the CFSAC shortly after her appointment in 2012. The CFSAC bylaws requires that a vacancy be filled within 90 days, and Dr. Koh said that the 2011 nominations were being reviewed for a replacement. Ten months have passed and the vacancy remains, although my understanding is that a replacement for Dr. Rose has been selected and will attend the May CFSAC meeting.

Now there will be another vacancy to fill. I’ve asked Dr. Lee if a new call for nominations will be made, or if previous nominations will be reexamined. I have no additional information about why Dr. Vincent resigned or what timeline we can expect for a replacement, but I will keep you posted as I learn more. 

 Updated April 22, 2013: Dr. Lee’s office said by email: “Dr Vincent has resigned; the reason for her resignation is private information.  We will be following the FACA rules to select her replacement.  The new member replacing the member who resigned last year will be introduced at the May meeting.  We will post the name on the CFSAC website soon. Thanks for your continued interest in CFSAC.”

Updated April 23, 2013: The new member of the CFSAC, replacing Dr. Jacqueline Rose, is Rebecca Patterson Collier, RN.

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14 Responses to Vincent Departs

  1. Tina says:

    I spoke to her during a CFSAC lunch break last June. She has a soft demeanor. I don’t remember what I asked her, but her response was that she doesn’t focus on chronic fatigue syndrome. It’s not unusual for committees to have some on the periphery of the topic as well as those in the middle of it. I thought it was good that she realized the distinction between fatigue in general and ME/CFS. My hope was that her presence on the committee would open up a chance for her to influence others at Mayo.

    I agreed with most or all of her votes and comments she made while she served on the committee. To me, that’s where you know the person’s views.

  2. floydguy says:

    re: PEM

    Please correct me if I am wrong but the only way I am familiar with to “document” PEM is a 2 day exercise test at U of Pacific or in Ithaca, NY. How many people have done this? What is the percentage of people who have done this testing have PEM. Sorry questionnaires don’t cut it for me and they shouldn’t for dx at this point in time. Currently it is far too important as a differentiator to rely on subjective patient assessments or guessing by the MD.

    • Jennie Spotila says:

      I agree that 2 day testing is the best way to document. However, it seems highly unlikely that 36% of those classified as CFS in the study had this done. I am assuming that the paper is referring to patient reports of PEM, which introduces the bias of the health care providers. How many know what PEM is or what questions to ask a patient in order to determine if PEM is present?

      My point is simply that we cannot conclude from this study that only 36% of those meeting Fukuda also have PEM. There are two many confounding factors in this study design.

  3. I hope everyone one the CFSAC resigns.

    Then it would cease to exist. Yay!

    Now, that would be progress.

  4. Bob Miller says:

    Patients have one point of Access to the Federal Health Agencies re: ME/CFS and that is CFSAC, asking to cut off our only lifeline for our patient community is Not in the best interest of this patient population. Instead we need patients to attend in force, having 20 or so patients show up at each meeting damages our credibility. So Fight to get more to attend, create a donor fund in your area to fund patients to attend. Jam 500 patients into CFSAC and I promise you we will get proper responses. We must stop blaming the Gov’t and take some responsibility for inaction. Let’s work together to figure out how to move forward.


    Robert Miller

    • Jennie Spotila says:

      “We must stop blaming the Gov’t and take some responsibility for inaction.”

      Bob, I don’t agree. The dreadful lack of funding, the definition issue, and other problems are the result of government inaction and inattention. You and I and many other patients have sacrificed our health and limited resources to say precisely that at CFSAC meetings. In fact, you have been one of the most vocal critics of some government actions related to ME/CFS in recent months. Not every forum is the appropriate place to complain about the government. For example, the FDA meeting should not be used that way. But I am surprised that you would place the responsibility for our problems on patient inaction. Perhaps this is not what you intended to say. I hope not. It would be wonderful for more patients to participate in advocacy, and I hope the trend continues. And I wholeheartedly agree with your comment that we need to work together to figure out how to move forward.

  5. floydguy says:

    @Jennie Spotila

    I didn’t mean to attack what you wrote just highlight that I think we need objective testing for “PEM”. There is too much bias or potential for meaningless reporting on a crucial abnormality. I fear PEM comes down to do any symptoms get worse during/after exercise.

    • Jennie Spotila says:

      @floydguy – I didn’t interpret your comments as an attack at all. I agree that we need to measure PEM objectively, although it’s a harsh test to put people through.

  6. Shar Childers says:

    I still remember my neurologist asking me how long it took to recover after an activity. I replied 3 days. He shook his head and restated the question. I repeated my answer. He rephrased the question, my husband and I looked at each other and then both replied 3 days. The neurologist gave up.

    It took me another year to get a correct diagnosis.

    I think plenty of patients say things like: I went out to dinner with my family and I couldn’t get out of bed for days. Doctors just don’t recognize/register these statements.

    I agree that for research purposes PEM needs to be measured objectively but I think a simple open ended question like my neurologist asked is all that is needed in a clinical setting.

    Sorry, I know the comments have gotten a little OT.

  7. floydguy says:

    @Shar Childers

    The question though is how large is the “gray” area? I am skeptical that the 1MM people with “CFS” could state that it takes them 3 days to recover after going out to dinner. Does a little stiffness count? What counts as exercise? The other problem is that 95% of MDs (at least in my anecdotal experience) are in total disbelief that this is possible in someone who looks “fine”.

  8. Jay says:

    PEM research is being carried out at Mt. Sinai in New York City by Dr. Enlander. I participated in the pilot phase, and, as severely difficult as it was physically, it sure beat questionnaires (although these were used also).

    Obviously it’ll be some time before we know about results, but I’m looking forward to this.

  9. Justin Reilly says:

    @Jennie Spotila

    I totally agree, Jenny.

    I am glad that Dr. Vincent is not on CFSAC any more. She does seem to focus more on Fibro from the number of papers she’s done. The ME papers she has done are similar to the Wessley School misinformation.

  10. Justin Reilly says:

    @Justin Reilly

    My comment that I agree with you refers to your response to Bob Miller’s comment.

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