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Please SIGN PETITION AGAINST the NOMINATION OF SUZANNE VERNON for the CFSAC

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Aug 17, 2011.

  1. ixchelkali

    ixchelkali Senior Member

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    Andrew, the CFSAC is not part of the CDC. It advises the Secretary of Health and Human Services, who is in effect the CDC's boss. Here's the contact information for the CFSAC:
    Chronic Fatigue Syndrome Advisory Committee (CFSAC)
    Office of the Assistant Secretary for Health
    U.S. Department of Health and Human Services
    Hubert H. Humphrey Building, Room 712E
    200 Independence Avenue SW.
    Washington, DC 20201
    (202) 690-7650 (Voice)
    (202) 401-4005 (FAX)
    cfsac@hhs.gov (Email)

    The Designated Federal Officer (DFO) for the CFSAC is Dr. Nancy C. Lee, Deputy Assistant Secretary for Health. She just replaced Wanda Jones. The DFO acts as liaison between the CFSAC and the other federal agencies, such as the CDC and the NIH.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Please sign if you haven't. Thanks!
  3. chloe

    chloe

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    Nancy C. Lee, Director of Office of Women's Health. Her contact info for anyone who requires it. As of March 15, 2011, U.S. extramurual budget for disease that affects > 1 million people is $6 million. Have you seen the chart? -Chloe

    http://report.nih.gov/rcdc/categories/

    Last name Lee
    First name Nancy
    Middle name C
    Agency OS
    Organization HHS/OS/OASH/OWH
    Job title Director OWH
    Room 7-712.E
    Duty station Washington DC
    Mail stop 200 Independence Avenue SW
    Phone (202) 690-7650
    Internet e-mail Nancy.Lee@hhs.gov
  4. chloe

    chloe

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    Below is summary of extramural [outside walls of NIH] expenditures on Chronic Fatigue Syndrome research by NIH.
    http://report.nih.gov/rcdc/categories/ProjectSearch.aspx?FY=2010&ARRA=N&DCat=Chronic Fatigue Syndrome
    (extramurual awards for research on CFS)

    Notable awards are Judy Mikowitz --$322,097, "New Strategies to Decipher the Pathophysiology of CFS;"
    Shawn Spencer, Florida Agricultural and Mechanical University, "HHV-6 INHIBITION: IMPLICATIONS IN CHRONIC
    FATIGUE" It does not appear ground breaking, although the issue of HHV-6 in CFS is very important.At least nice to see it there. But there is no Shawn Spencer in faculty roster.

    http://pharmacy.famu.edu/bluepill.php?sect=includes/researchcenters/rcmi/faculty_profiles/faculty research/spencer

    Here begins the organizational structure of the NIH bureacracy.
    http://directory.psc.gov/

    It appears the individual overseeing the NIH Office of Women's Health (boss of Nancy Lee) is a Howard K. Koh, MD, MPH, Office of the Assistant Secretary of Health (ASH). He oversees MANY offices.

    http://www.hhs.gov/ash/leadership/ash.html


    Last name Koh
    First name Howard
    Agency OS
    Organization HHS/OS/OASH
    Job title Assistant Secretary for Health (ASH)
    Room 7-716G
    Duty station Washington District of Columbia
    Mail stop 200 Independence Ave. SW HHH B
    Phone (202) 690-7694
    Internet e-mail Howard.Koh@hhs.gov

    http://www.hhs.gov/ash/leadership/ash.html
    (photo of Dr. Koh and description of work of his office)

    I apologize for the rest of the mish-mash. To see, probably best to go to the webpage. Reportedly, this year they are
    spending less than $6.00 for each person affected by this disease.

    For disease that predominately affects females, VIAGRA makes the list of possible interventions!

    (http://report.nih.gov/rcdc/categories/ProjectSearch.aspx?FY=2010&ARRA=N&DCat=Chronic Fatigue Syndrome)

    Click the column headings to sort project listings.

    Category FY Funding IC Project Number Sub Project # Project Title PI Name Org Name State / Country Amount
    Chronic Fatigue Syndrome 2010 NIAID 5R01AI065723-04 Immunologic Mechanisms, Biomarkers and Subsets in Chronic Fatigue Syndrome (CFS) FLETCHER, MARY UNIVERSITY OF MIAMI SCHOOL OF MEDICINE FL $371,481
    Chronic Fatigue Syndrome 2010 NINR 5R01NR010229-03 Fatigue Self-Management in Primary Care: Efficacy, Credibility, and Economics FRIEDBERG, FRED STATE UNIVERSITY NEW YORK STONY BROOK NY $228,297
    Chronic Fatigue Syndrome 2010 NHLBI 5R01HL087803-03 Vascular Dysfunction in CFS STEWART, JULIAN NEW YORK MEDICAL COLLEGE NY $397,500
    Chronic Fatigue Syndrome 2010 NHLBI 5R01HL059459-11 Orthostatic Intolerance in CFS FREEMAN, ROY BETH ISRAEL DEACONESS MEDICAL CENTER MA $412,046
    Chronic Fatigue Syndrome 2010 NIAID 1R21AI088765-01 Infectious Triggers in Chronic Fatigue Syndrome SCHUTZER, STEVEN UNIV OF MED/DENT OF NJ-NJ MEDICAL SCHOOL NJ $273,000
    Chronic Fatigue Syndrome 2010 NHLBI 5F30HL097380-02 Inhibition of NO Dependent Splanchnic Hyperemia Improves CFS/POTS OCON, ANTHONY NEW YORK MEDICAL COLLEGE NY $27,988
    Chronic Fatigue Syndrome 2010 NIAMS 5R01AR053821-04 HERV-K18 as a Risk Factor for CFIDS HUBER, BRIGITTE TUFTS UNIVERSITY BOSTON MA $143,514
    Chronic Fatigue Syndrome 2010 OD 5R01AR053821-04 HERV-K18 as a Risk Factor for CFIDS HUBER, BRIGITTE TUFTS UNIVERSITY BOSTON MA $164,058
    Chronic Fatigue Syndrome 2010 NIAID 5R01AI078234-02 New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome MIKOVITS, JUDY WHITTEMORE PETERSON INSTITUTE NV $322,097
    Chronic Fatigue Syndrome 2010 NINDS 1R01NS071361-01 Brain mast cells and Chronic Fatigue Syndrome THEOHARIDES, THEOHARIS TUFTS UNIVERSITY BOSTON MA $348,539
    Chronic Fatigue Syndrome 2010 NIAID 1R21AI090553-01 The Relationship of XMRV to Functional Status and Co-infections in Chronic Fatigu HANSON, MAUREEN CORNELL UNIVERSITY ITHACA NY $269,496
    Chronic Fatigue Syndrome 2010 NINDS 1R01NS072599-01 Patient-Partner Stress Management Effects on CFS Symptoms and Neuroimmune Process ANTONI, MICHAEL UNIVERSITY OF MIAMI CORAL GABLES FL $536,255
    Chronic Fatigue Syndrome 2010 NIAMS 1R01AR057853-01A1 Study of Chronic Fatigue Syndrome using comprehensive molecular profiling with ne KLIMAS, NANCY SOUTH FLORIDA VA FDN/RESEARCH/ EDUCATION FL $532,191
    Chronic Fatigue Syndrome 2010 NIDDK 5U01DK082345-03 0002 Pain and Sensory Processing in IC/PBS and Fibromyalgia WILLIAMS, DAVID UNIVERSITY OF MICHIGAN AT ANN ARBOR MI $328,680
    Chronic Fatigue Syndrome 2010 NIMH 1ZIAMH002592-19 Viral And Cellular Factors Governing Efficient Gene Delivery EIDEN, MARIBETH NIH $1,538,297
    Chronic Fatigue Syndrome 2010 NCRR 5G12RR003020-26 6274 HHV-6 INHIBITION: IMPLICATIONS IN CHRONIC FATIGUE SPENCER, SHAWN FLORIDA AGRICULTURAL AND MECHANICAL UNIV FL $138,429
    Chronic Fatigue Syndrome 2010 NCRR 5P20RR020145-07 8309 PHYSIOLOGY OF THE STRESS RESPONSE IN PATIENTS WITH TMD AND FIBROMYALGIA YEPES, JUAN UNIVERSITY OF KENTUCKY KY $78,530
    Chronic Fatigue Syndrome 2010 NCRR 5U54RR026138-02 5448 CLINICAL TRIAL: USE OF SILDENAFIL (VIAGRA) TO ALTER FATIGUE FRIEDMAN, THEODORE CHARLES R. DREW UNIVERSITY OF MED & SCI CA $83,644


    http://axis.cdrewu.edu/functions/clinical-resource-center/projects (Clinical and Translational Research Center--- note affiliatd with UCLA)
    Theodore Friedman, M.D., PhD Use of Sildenafil (Viagra) to alter fatigue, functional Status, and Impaired Cerebral
    Blood Flow in Patients with Chronic Fatigue Syndrome Dr. Friedman 310-668-8754

    Director of Research Education and Training

    Theodore Friedman, M.D., Ph.D.
    AFH Room 3087
    Ph: (310) 668-5197
    Email: theodorefriedman@cdrewu.edu

    ------------------------------------
    -Chloe (newbie on PhoenixRising; fascinated by bureacracy and how to get message inside; maybe I will send them my curriculum vitae, somewhat impressive until 2001, then it stops - career amputated. Like what happens to many of us. Easy to do while supine in bed.)
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Chloe,
    Pat Fero did a nice report analyzing the NIH expenditures. they say they spend about $5M per year on "CFS" (already insulting), but it's a sham. There's only really $3M on "CFS" including a lot of psych stuff. The other $2M is on other diseases and illnesses that they wrongly pad the "CFS" budget with. So we get about $3 per patient as opposed to about $300 per patient for most other diseases.
  6. Cort

    Cort Phoenix Rising Founder

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    I see that the reason for the petition is basically that Suzanne Vernon works wwith the CAA and therefore should not be on the panel. I suggest looking at wh she has done at the CAA and using that to determine whether she should be on the panel or not. I suggest that the evidence indicates she would be an excellent advocate for everyone desiring a physiological explanation for this illness.

    Dr. Vernon has a very, very strong record of doing pathophysiological, advocating for and now funding pathophysiological research into ME/CFS. She won an award for her work at the Reno IACFS/ME conference - and was rewarded with a standing ovation; she and Annette Whittemore were the only ones to receive such a response.

    Under her direction the CAA has funded a series of innovative research studies.In one instance she slammed three studies together to create one multi-dimensional study. She was the vision behind the CAA's biobank and their Research network. Nobody works harder to network with ME/CFS researchers yet Khaly is willing to throw all that away because she was the last and least significant co-author of the Empirical definition - a definition that she has stated the CAA will never use and does not support.

    You might also consider, while she gets torched for participating in that, that it was only after she joined the CAA that they were able to bring out that damning report demonstrating Dr. Reeves fiscal irresponsibility at the CDC. That more than anything , I would guess lead to his dismissal. (On the other hand you can focus on the one paper that you didn't like that she co-authored if you wish.)

    http://forums.phoenixrising.me/showthread.php?533-Walking-Her-Talk-Dr.-Suzanne-Vernon

    If you want someone who knows the research community, works well with them and is focused on producing innovative studies to figure out CFS and has a big vision for what the ME/CFS research community could look like - then you'll be very happy with her if she's one the Committee.

    Given her connections, her work ethic and the commitment to ME/CFS that she's demonstrated over the past couple of years I heartily hope she's gets on the Committee. Suzanne has a reputation for speaking bluntly and directly and getting things done - I think she would be a real asset there.
  7. Cort

    Cort Phoenix Rising Founder

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    Here are some of Suzanne's research citations on chronic fatigue syndrome.....Cytokines, HPA axis problems, immune problems during exercise, inflammation, neuro-endocrine and inflammatory network problems.....

    Does anyone have any complaints about these?

    That is the kind of person that I want on the CFSAC panel......

  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Actually, I don't like this paper you cite:
    I wouldn't call the research on ME "intensive research efforts." The cite is to the 1994 Fukuda paper.

    There are a bunch of other Hickie papers cited, a Chalder and Cleare, another Peter White, etc.

    And this is from the cherry-picked best papers by Vernon. There were plenty of other bad papers that we all discussed on another thread.

    Her salary including benefits was $145K last year I believe. Correct if wrong. This is too much considering her record and our lack of resources. I need to see her consistently putting science and patients first, including publically and consistently denouncing the Reeves criteria and CDC's crimes.

    and the Reeves criteria paper is more than simply "the one paper that we didn't like", it's a crime against humanity.

    I will say, her talk in Sweden (the substansive part, not the two-thirds that was a CAA commercial) was good. She talked about a problem with Fukuda and the term "CFS" etc. But she's going to have to do a lot more to make up for her anti-patient and anti-science collusion with Reeves, imo.
  9. Cort

    Cort Phoenix Rising Founder

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    Go ahead and point all the bad papers Justin - then we can match them up side by side with the good papers.

    Are you suggesting that we kick Suzanne Vernon off the CFSAC committee not because of studies that she co-authored but because of citations that were in paper; ie the fact that the study was on CFS pathophysiology isn't really pertinent... the more pertinent fact was that she cited papers you didn't like; ie she might find the cause of CFS but if she happened to cite some papers you didn't like - you would reject her?

    For me the subject matter of the study is the critical component and if a researcher is looking at the immune system or pathogens or neuroendocrineimmune networks etc. - I'm for it.

    I think if you look at Dr. Vernon's work objectively and peel away the objections based on the fact that she works for the CAA then you'll find a strong advocate for a pathophysiological approach to ME/CFS - that's what we need, that's what she demonstrated and that is who you are advocating against.

    By the way condemning researchers for creating studies seeking to find the pathophysiological causes of CFS (a good thing - correct?) which do not have positive findings is wrongheaded in my opinion. Researchers cannot predict the results of their studies - all they can do is initiate them and carry them out. Questioning their integrity of researchers who carried out good studies and were still unable to find XMRV, for instance, was a mistake, I believe. All we can legitimately hope for is for good studies aimed at the physiology of ME/CFS.

    I'm glad you liked her talk - I suggest that is who she is and therefore, given that the CAA is more a research funder than anything, that that is who they are as well....
  10. Dreambirdie

    Dreambirdie work in progress

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    I have to disagree with you, Cort.

    Whenever I've heard Suzanne Vernon talk at the CFSAC, or NIH SOK, or read quotes as to what she has said to reporters, I fully understand why so many are objecting to her presence on the committee. At best she sounds like a pre-programmed bureaucrati-caton, talking a whole big lotta nothing. Just listen to some of her mumbo jumbo here on... "GAPS" and how "we need to define terminology and define CASENESS..." (WTF is caseness?) And that we have "discipline SILOS" that need SOP's." There is nothing substantial, productive or helpful here at AT ALL.
    http://www.youtube.com/watch?v=M8079s2xzu8

    I agree.

    Besides the "retarded research" here's more complaints I've heard about Vernon, and the CAA in general.

    *an unwillingness to address the MANY complaints from the CFS patients they were supposed to be advocating for (http://www.cfscentral.com/2011/02/ba...any-22222.html),

    *being horribly skeptical of XMRV findings, and non-supportive of the WPI,

    *the CAA's pathetic response regarding the ICD-10-CM plans to move CFS to R53: (as in Malaise and Fatigue). Unfortunately, we have neither the time nor expertise to engage on this issue. We have no clinicians on staff, and no expertise in making the case for how diagnostic codes will have a negative impact on reimbursement. The IACFS/ME or CFSAC might be in a better position with the right expertise. (Jenny Spotila of CAA) http://www.cfscentral.com/2011/02/is...222222222.html

    *repeated idiotic comments, like the one made by Vernon to Amy Dockser Marcus of the Wall Street Journal, in comment to a published study that found abnormal proteins in the spinal fuid of CFS patients: Its difficult to have a diagnostic test based on spinal fluid. You cant just go poking everyone in the spine.

    88.46% of patients who took the CAA poll on this thread (http://forums.phoenixrising.me/showt...aa-poll/page12) thought CAA needs to change direction and leadership, and so far 598 people have signed the Petition to Disassociate From the CAA as Our Advocacy Representative http://www.change.org/petitions/peti...representative

    The list goes on. I am sure I could dig up more, if I really devoted myself to looking. But honestly, I'd rather got for a walk to the ocean than think about Vernon any longer than I have to. She is NOT a good choice for the CFSAC, she does NOT represent us, and my wish is that she is NOT chosen.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'm not condemning people for well-designed studies that don't find anything. Where did you get that from?

    The Reeves criteria retard and distort the research so much that this trumps any Fukuda bio research she did.

    Also, the citing of Wessely and White etc isn't as important as the actual research, but it is important (and additionally it says alot about motives and objectivity of the author).
  12. CBS

    CBS Senior Member

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    Cort, I have to agree with Justin (and we haven't talked in so long, I wanted our first conversation to be on an up note. I should have sent a happy birthday wish when I had the chance - I was thinking about you. Lousy place for a belated birthday wish but here it is!). No information really is far better than bad information and the absolute bottom line is that poorly defined cohorts cannot lead to anything but bad information (or as Justin put it, "retarded and distorted research"). This applies in all cases, regardless of how well designed the rest of a research project might be. Perhaps in these circumstances, cohort becomes even more importnat as a poorly crafted cohort becomes more likely to be overlooked or dismissed as less important (leading researchers, doctors and their patients to conclude that at best there are only weak correlations with physiological processes when the truth may be that it was only the heterogeneous cohort that lead to disparate results that mean nothing to a well defined group of ME patients - but a failure to followup on a promising area of research.

    You wrote:
    Subject matter is important BUT it is far from enough to overcome poor design, especially poor cohorts.

    The timing of this post is interesting. I had at one point in time considered participation in the CAA BioBank. However, I have since come to appreciate not only the need for good research but the real harm done by poorly designed research. Just yesterday I received an e-mail from the CAA asking that I provide medical history information so that I can be considered for participation in their Biobank.

    Here is my response (sent this afternoon):

    It is my strong opinion that patients need to send a clear message to any person or organization undertaking research into ME/CFS that we will not continue to contribute to or support the poor research (whether the issues be cohorts, subject matter, or more mundane mistakes in design) that has so deeply harmed all of us.

    With this in mind, I too cannot, in good conscience, support the nomination of Suzanne Vernon to the CFSAC.
  13. Dreambirdie

    Dreambirdie work in progress

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    HI Shane--

    I agree completely with the above. CAA's retarded, distorted and sloppy research has done MUCH MORE HARM THAN GOOD for all of us with ME.

    And btw, it's good to see you here. :Retro smile:

    Thanks for your great letter to the CAA. I am interested to hear what their response will be.
  14. CBS

    CBS Senior Member

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    Hi DB,

    I'm not dead yet.

    I need to be clear that I'm not criticizing any particular study funded by the CAA. I'm sure that some have been better than others - no study is perfect. The trick is knowing how to tell just what was actually learned from a study and what ought to be cast aside. To do that, we'd have to sit down and go through specific articles and critique then individually. Unfortunately, that task is made much simpler with ME when you start your critique by looking at the diagnostic criteria used to select the cohort. With ME/CFS, any study that uses a criteria less restrictive than the CCC ought to be looked at very critically and studies employing the "empiric" criteria or the oxford criteria (or any other made up criteria) ought not be looked at, at all. Some might think my stance a bit extreme but I really do feel that we would be far better off acknowledging what we haven't learned and focusing on what we really do know and the place to start with that task is to throw out EVERYTHING that might be misleading (in terms of suggesting either the presence or absence of any mechanism or association). Poor cohorts is like having a large puzzle with half of the pieces from a second puzzle that appears similar on the surface but is cut into different shapes tossed into the mix. Good luck!

    My primary issue here is with the issue of cohorts and Suzanne Vernon's role in the 2005 Reeves criteria. To me, that criteria and the role that all of the poorly defined criteria have played in obscuring any coherent information that may exist amongst homogeneous subsets (forever buried in data from larger heterogeneous cohorts) is as Justin puts it, a crime against all of us. A waste of precious resources and the corner stone of every argument and litany of excuses that begins with "CFS is a poorly defined and poorly understood syndrome."

    I find it laughable and sadly ironic that the CDC uses this phrase repeatedly without any apparent awareness of their own culpability in perpetuating this lie and actively blocking the path to a greater understanding of ME(CFS). The truth is that "CFS" was a poorly defined construct inadequately researched by the CDC and then they used the results of their own poor "research" to justify doing nothing of a serious nature to learn more about this disease. Their indifference to the suffering of every ME patient is criminal and will go down in the history of medical science as one of the largest and most far reaching crimes against patients in the history of public health and medicine. The CAA has made weak, ineffective gestures trying to have to the cohort question both ways. Unfortunately, Suzanne Vernon played a significant role in the CDC's indefensible past and the CAA's ineffectual present.
  15. Dreambirdie

    Dreambirdie work in progress

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    Good to know. And YAY for that.


    I'm so glad you are wiling to articulate all of this... Great job! THANK YOU.

    I've bolded my favorite parts, and agree completely with the points you've made.
  16. floydguy

    floydguy Senior Member

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    Bravo! I agree 100%. The most important thing that can be done is to insist on objective diagnostic criteria - particularly for research studies. It's depressing to think of the potentially fruitful avenues that might have been blocked due to heterogenous research patients.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CBS,

    Thank you for your lucid explanation of this most crucial problem! Beautifully said!

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