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IOM Panelists: The Knowns

December 7th, 2013

In this post, we present profiles of the eight members of the Institute of Medicine ME/CFS definition panel who are known to the ME/CFS community in some capacity. Many, but not all, of them are ME/CFS experts in that they work predominantly in that area. You can read about the team who put these profiles together and the methods we used in this previous post.

Important disclaimer: Many of us know one or more of these panelists quite well. They are our doctors, our colleagues, our friends. We strove to be as objective as possible, and applied all the same research methods and questions here as we did for the other panelists.

Lucinda Bateman

Dr. Lucinda Bateman has specialized in the treatment of ME/CFS and fibromyalgia since 2000. She was educated at Brigham Young University (BA, MS) and Johns Hopkins University (MD). She practiced general internal medicine from 1991 through 2000, and then opened her Fatigue Consultation Clinic. Dr. Bateman’s sister suffered from the disease, and died from non-Hodgkins lymphoma in 2001.

Dr. Bateman has participated in research in a variety of ways. She provided patients for laboratory studies investigating XMRV and cytokine expression after an exercise challenge (the remarkable Light studies). Given her position as a solo practitioner with no university appointment, she has also participated in clinical trials for treatments including Ampligen, Cymbalta, and the Synergy trial. Dr. Bateman has also received substantial payments for speaking and research from pharmaceutical companies, including Eli Lily, Pfizer, and Forest.

Given her significant contributions to ME/CFS policy issues, it is not surprising that Dr. Bateman was nominated to the IOM panel by at least six sources. She served on the CFS Advisory Committee (2005-2010), the Board of Directors and Scientific Advisory Board of the CFIDS Association, and the board of the IACFS/ME. She also co-founded and serves on the board of OFFER (Organization for Fatigue and Fibromyalgia Education and Research).

Dr. Bateman is a co-author on the ME-ICC definition, and withdrew her signature from the expert letter in support of the CCC. Her clinic is part of the CDC multisite study, and Dr. Bateman has participated in multiple physician education efforts, including some of the CDC’s Medscape courses. Dr. Bateman brings a great deal to the IOM panel: her experience caring for more than 1,000 ME/CFS and fibromyalgia patients; her research and clinical trial experience; her physician education experience; her general internal medicine experience; and her long dedication to participating in ME/CFS policy issues.

Lily Chu

Dr. Lily Chu holds degrees from the University of Washington (BS, MD) and University of California, Los Angeles (MSHS) and is board certified in both internal medicine and geriatric medicine. Dr. Chu is also a patient with ME/CFS and is very knowledgeable about issues including definition, diagnosis, treatment, and disability.

Prior to her illness, Dr. Chu was a geriatrician at The Permanente Medical Group in San Francisco. She worked as part of multidisciplinary teams in her clinical practice and in her research into pain assessment in the elderly, quality of care and quality improvement. She has collaborated on articles that provided retrospective analysis, cross-sectional descriptive studies, and method reviews with a focus to improving the methods used. This experience will be of benefit as the IOM panel undertakes a systematic review to develop clinical diagnostic criteria for ME/CFS.

Dr. Chu has consulted with non-profit, academic, research and government groups on matters related to ME/CFS. She is a board member for the IACFS/ME and the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative. Her work with the Stanford initiative involves identifying and participating in activities that benefit patients, researchers and healthcare providers by expanding their knowledge base to improve care. Dr. Chu spoke on two panels at the April 2013 FDA Drug Development Workshop, and collaborated with Dr. Leonard Jason to conduct a patient survey prior to the meeting. The results of the survey were submitted to the FDA and were incorporated into the FDA report. Dr. Chu has participated in the CFS Advisory Committee’s review of the CDC website on CFS, and she was nominated to the Committee this year.

Dr. Chu was nominated to the IOM panel by at least two sources, and we found no conflicts of interest or payments from pharmaceutical companies. Dr. Chu joined in the experts’ letter advocating the adoption of the CCC. She brings the perspective of both the patient and the clinician-scientist to the panel, a combined skill set that is extremely relevant to the panel’s work.

Ronald Davis

Dr. Ronald Davis is Director of the Stanford Genome Technology Center. He has spent his career co-inventing techniques that have become the cornerstones of gene technology: the mapping of coding RNA which led to the discovery of RNA splicing; the use of restriction endonucleases for joining DNA fragments; the development of the first DNA microarray for gene expression profiling; and the method for constructing genetic linkage maps which made the Human Genome Project possible.

Dr. Davis has an incredible legacy of publications and patents. He has won numerous awards, including the very prestigious Gruber Genetics award in 2011. He was elected to the National Academy of Sciences (a sister institution to the IOM) in 1983, but has not served on any IOM committees. Based on his academic career alone, he would be a prestigious member of the panel and could address the many questions about ME/CFS and genomics.

But Dr. Davis has another qualification that has introduced him to many in the ME/CFS community: his son Whitney is very ill with ME/CFS. Dr. Davis has turned his formidable mind and experience to unraveling the genetics of ME/CFS. Through his own CFS Research Center at Stanford and his partnership with the Open Medicine Institute, Dr. Davis will sequence the entire genome of study participants and search for microbial causes of the disease (although a great deal has not been disclosed about the study design). Dr. Davis is on the board of the Open Medicine Institute but not the Open Medicine Foundation, a non-profit. OMI is a California B-corp and, among other things, is one of the participating locations in CDC’s multisite study.  Dr. Davis was interviewed by Ryan Prior for The Blue Ribbon documentary, and Ryan told me that one of Dr. Davis’s comments (at approximately :21) inspired one of the slogans for the film.

Many of us had never heard of Dr. Davis prior to the IOM panel announcement, and I originally listed him as a non-expert. He was nominated by at least one ME/CFS source, and our team was excited by what we learned about him. It is quite clear that Dr. Davis brings his family experience and formidable scientific mind to the panel’s task. However, it is important to note that like many other panelists, he has no clinical experience working with ME/CFS patients and no experience in creating clinical case definitions.

Betsy Keller

Dr. Betsy Keller may not predominantly work on ME/CFS, but she has certainly become a growing contributor to the field. She received a Master’s and PhD in exercise science from the University of Massachusetts. Overall, her research has focused on childhood obesity and the effect of exercise on maximizing function through all phases of life. In the last ten years, however, Dr. Keller has followed the path of Dr. Christopher Snell and Staci Stevens investigating the role of exercise capacity in ME/CFS.

Her first ME/CFS patient exercise test was performed on an Ithaca woman who could not travel to Stevens’ lab. Dr. Keller described the same reaction to the results as Stevens experienced: there must be something wrong with the equipment. She presented research at the 2011 IACFS/ME conference, and collaborated with Dr. Maureen Hanson to provide an exercise component to Hanson’s XMRV work. Dr. Keller reportedly has additional ME/CFS studies and publications underway, and provides two-day cardiopulmonary exercise testing to ME/CFS patients.

Dr. Keller was recently nominated to the CFS Advisory Committee by Dr. Hanson, and signed on to the expert letter advocating for the immediate adoption of the CCC. Beyond that, she has not taken a public position on the ME/CFS case definition, nor does she have expertise in developing such definitions. While Dr. Christopher Snell and Staci Stevens received more nominations to the IOM panel, Dr. Keller can bring a similar expertise with two-day CPET and interpreting those unusual results in ME/CFS patients.

Nancy Klimas

Dr. Nancy Klimas has earned the title “ME/CFS expert” through almost twenty years of work on this disease. She studied ME/CFS and ran a clinical practice at the University of Miami for many years. In 2012, Dr. Klimas opened the Institute for Neuroimmune Medicine at Nova Southeastern Unversity, where she also chairs the Department of Clinical Immunology.

She has consistently been among the most successful ME/CFS researchers in securing funding from NIH and the Department of Defense, including a $4 million grant announced last month. Dr. Klimas was one of the pioneers of ME/CFS crossover research, incorporating CFS patients into Gulf War studies. Her collaborations with Dr. Mary Ann Fletcher, Dr. Gordon Broderick, and others, have led to some of the most extensive work characterizing immune system abnormalities and systems networking in this field. Dr. Klimas has combined her clinical practice and research, applying information learned at bedside or bench to the other. She is participating in the CDC multisite study, and has conducted clinical trials on Ampligen.

Dr. Klimas has contributed to ME/CFS issues in numerous ways. She is past president of the IACFS/ME, served on the CFS Advisory Committee from 2007-2012, and also served on the CFIDS Association Scientific Advisory Board. She is a Principal Investigator with the Chronic Fatigue Initiative, and has spoken at hundreds of meetings including the April FDA Workshop and last month’s Mt. Sinai ME/CFS conference. Dr. Klimas has been interviewed for the Canary in the Coalmine documentary, and is perhaps most quoted for telling the New York Times that given the standard of care in 2009, she would rather have AIDS than ME/CFS.

Out of all the panelists, Dr. Klimas has probably made the most public statements on the ME/CFS case definition. She is a co-author of both the CCC and ME-ICC definitions. She signed the expert letter urging HHS to adopt the CCC. Dr. Klimas was nominated to the IOM panel by at least six sources, so it’s clear that she is widely regarded as a vocal and highly qualified expert on the subject.

 

Martin Lerner

Dr. A. Martin Lerner is an infectious disease specialist with an MD from Washington University School of Medicine. He served as Chief of the Division of Infectious Diseases and Professor of Internal Medicine at Wayne State University School of Medicine, 1963-1982. Dr. Lerner now treats CFS and tick-borne diseases at his Treatment Center for Chronic Fatigue Syndrome, and is a Professor in the Department of Internal Medicine at Oakland University William Beaumont School of Medicine.

Dr. Lerner believes that ME/CFS is caused by persistent herpes virus infection, including Epstein-Barr virus, Cytomegalovirus and HHV-6, singly or in combination. In both his research and clinical practice, Dr. Lerner has focused on identifying and treating these persistent infections. As part of diagnosing ME/CFS, Dr. Lerner uses 24-hour Holter ECG monitoring. He believes that abnormal results are a biomarker for CFS, and that absence of abnormal results indicates fatigue is not caused by CFS. In 2010, Dr. Lerner published the results of a retrospective review of his clinic data showing that 74% of selected patients dramatically improved after treatment with valacyclovir or valganciclovir. He presented these results at the CFS Advisory Committee Science Day on October 12, 2010.

Dr. Lerner is the only infectious disease specialist on the panel, a critical role, and reportedly is recovered from ME/CFS himself. We found no evidence of conflict of interest. Dr. Lerner is a co-author on the CCC, and signed the experts’ letter in support of adopting that definition. His strong views on the causation and diagnosis of ME/CFS are relevant to the IOM panel’s task.

 

Benjamin Natelson

Dr. Benjamin Natelson is a neurologist with a long history of both patient care and ME/CFS research. He was a Professor of Neurology and Neurosciences at the University of Medicine and Dentistry of New Jersey, now part of Rutgers University. While at UMDNJ, Dr. Natelson led one of the NIH’s CFS Cooperative Research Centers before all the centers were closed in 2002. Now Dr. Natelson provides an integrated approach to patient care and research at the Beth Israel Medical Center and Albert Einstein College of Medicine.

Dr. Natelson’s research on ME/CFS has examined the role of the central nervous system in ME/CFS and other diseases. He has researched fibromyalgia, Lyme Disease, Gulf War Illness and ME/CFS patients. Among his notable studies is the finding of unique proteome markers in the cereberospinal fluid of ME/CFS patients and evidence that CFS and fibromyalgia are different illnesses. Dr. Natelson has collaborated extensively with Dr. Dane Cook, incorporating submaximal exercise challenge into much of his work. Dr. Natelson has generally been one of the more successful researchers in obtaining NIH funding, including a $2 million grant earlier this year shared with collaborators at Weill Cornell Medical College.

Dr. Natelson’s clinical practice is widely recognized, and does incorporate very gentle physical conditioning along with other treatments. He’s written two books for patients and spoken at numerous venues, including the Massachussetts CFIDS/ME & FM Association in 2012 and the NIH State of the Knowledge meeting in 2011. His clinic is a participant site in the CDC multisite study.

Dr. Natelson was nominated to the IOM panel by at least four ME/CFS sources. He did not sign the expert letter regarding the CCC (although his wife, Dr. Gudrun Lange, did). In 1994, Dr. Natelson was part of the International CFS Study Group that contributed to the Fukuda definition. Since that time, Dr. Natelson has become a “splitter,” believing that subtypes can be identified through biomarkers and symptom constellations. His focus on the involvement of brain disease and encephalopathy in ME/CFS is highly relevant to the IOM panel.

Peter Rowe

Dr. Peter Rowe is Professor of Pediatrics at Johns Hopkins University School of Medicine, and Director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center. After receiving degrees at Trinity College (BA) and McMaster University Medical School (MD), Dr. Rowe has spent most of his professional career at Johns Hopkins. Dr. Rowe started the Chronic Fatigue Clinic in 1997, and it has grown into the largest and most respected pediatric ME/CFS practice in the country.

Dr. Rowe is a clinician-researcher, like many other ME/CFS experts, and he pioneered investigation into the orthostatic intolerance issues that frequently accompany the disease. In 1995, Dr. Rowe and his collaborators published two seminal papers on the issue. The first reported evidence of neurally mediated hypotension in seven adolescents, and the second reported the same results in 23 adults. Treatment with Florinef and/or beta blockers showed promise for treatment in both groups. In 2001, Rowe and colleagues reported the results of a placebo-control trial of Florinef in adults that did not show a statistically significant difference between the groups. However, both Dr. Rowe and many ME/CFS patients have continued to use treatment for neurally mediated hypotension and report positive results. As a result of Dr. Rowe’s work, testing and treatment for orthostatic intolerance is considered standard of care among ME/CFS experts. Dr. Rowe has pursued other hypotheses in ME/CFS research, including the connection to Ehlers-Danlos and neuromuscular strain, and has received support from NIH and non-profit sources. Dr. Rowe has presented on these topics many times, including via webinar, the NIH State of the Knowledge Workshop in 2011, and the April 2013 FDA Drug Development Workshop.

In addition to clinical and research efforts, Dr. Rowe has participated in numerous ME/CFS policy efforts. He has served on advisory boards for the CFIDS Association several times (1999-2002, 2013- present), as well as NIH grant review committees, and the NIH Chronic Fatigue Syndrome Coordinating Committee of the NIH (1999-2002). Also of note is his role as a peer reviewer on the systematic evidence review authored by Dr. Cynthia Mulrow (discussed in a previous post). Dr. Rowe has participated in some of the CDC physician education efforts, and given presentations to the CFS Advisory Committee. We found no evidence of pharmaceutical payments or other conflicts of interest.

Dr. Rowe was nominated to the IOM panel by at least seven ME/CFS sources, more than anyone else that we could confirm. He did not sign the experts’ letter and is not a co-author on any ME/CFS disease definition paper. His clinical expertise focused on pediatric ME/CFS will be an important asset to the panel, as is his knowledge of orthostatic intolerance issues associated with the disease.

Acknowledgements: This post was a group effort, and would not have been possible without the assistance and participation of Lori Chapo-Kroger, Claudia Goodell, Chris Heppner, Denise Lopez-Majano, Mike Munoz, Darlene Prestwich, Tamara Staples, WillowJ, and one advocate who wished to remain anonymous.

 

  1. Roy
    December 7th, 2013 at 12:20 | #1

    At this point after 43 years of this curse of a disease I can only hope that our best interests will be endlessly defended and that all of our true advocates act as courageous whistleblowers.

  2. Tina
    December 7th, 2013 at 12:35 | #2

    I saw quite a few doctors in my search for a diagnosis. It was my gynecologist who said it looked like I have fibromyalgia or CFS, but he doesn’t treat that. At some point while seeing an internist, rheumatologist and endocrinologist in succession, all saying the same thing, I found a research study on the Internet that said most CFS patients have NMH. That study was by Komaroff. I was so excited because I had problems with dropping blood pressure since I was a child. Knowing the two were overlapping or associated with each other made me sure of what I have, which helped me know what to pursue. That was pivotal in my own illness journey.

    I later found out that Komaroff’s study was a validation of Rowe’s research. For that, I have had a soft spot in my heart for Rowe.

    I happened to be at CFSAC when he gave his presentation. During the lunch break, I told him of my experience and how important his research is. He said he could tell I have NMH as part of my illness because of the blue in my eyes, the white part. I had never heard that and, as all can imagine, took a much closer look in the mirror at my next opportunity.

    I can’t see that blue in my eyes. But I will never forget how it felt to be validated by a doctor who clearly had an understanding of my disease. I do not have the benefits of having one of the ME/CFS experts as my doctor. So, I either get scared and confused looks from my doctors or dismissive looks when I mention something happening to me or something new I discovered. I have rarely experienced that kind of validation from a doctor. But Rowe gave that to me.

  3. John
    December 7th, 2013 at 14:56 | #3

    Small typo- Nancy Klimas is listed as Lead Researcher with the Chronic Fatigue Initiative, not the Chronic Fatigue Institute.

    • Jennie Spotila
      December 7th, 2013 at 19:39 | #4

      Ack! I fixed it. Thanks for pointing it out!!

  4. Sandra
    December 7th, 2013 at 17:21 | #5

    I have an additional concern over and above the many other concerns ME/CFS patients have about the IOM contract. This concern is the statement in the FAQ put out by HHS that the “target audience is primary care clinicians.” What about all the specialist physicians? Don’t they also need to know the truth about ME/CFS? (That is assuming the IOM panel does a decent job with the task before them.) What happens when we find ourselves in a hospital ER or when we are referred to endocrinologists, gastroenterologists, neurologists, infectious disease docs, cardiologists, have to see a surgeon, etc.? How many of us dread having to go to these doctors not knowing the level of their knowledge of ME/CFS, their attitudes towards it, or what kind of reception we will receive? How many of us are afraid to even mention CFS and try to keep it hidden? Patients often tell stories of having to go to the ER, mention “chronic fatigue syndrome,” see a change in attitude of the clinicians, and later find a psychiatric attribution put on their records. This travesty needs to stop. And that is my concern if the efforts of the IOM are limited to primary care clinicians. It is my belief that ALL medical personnel need to have adequate knowledge of ME/CFS.

    • Jennie Spotila
      December 7th, 2013 at 19:44 | #6

      I agree, Sandra. I think that HHS wants a definition that primary care clinicians can use because that’s where we all start. Plus “fatigue” is one of the most common symptoms that brings people to their primary care docs. It makes sense for those providers to be able to recognize ME/CFS. That being said, I completely agree with you that ALL healthcare providers, especially ER docs, need to have adequate knowledge. Plus I’m not sure that primary care docs are the right :home” for us. I would rather have them know enough to recognize it and then refer us to specialists for diagnosis and management.

  5. Amanda rankin
    December 7th, 2013 at 18:17 | #7

    Are you happy with the commitee selection ?

    • Jennie Spotila
      December 7th, 2013 at 19:43 | #8

      The panel is better than I expected, but I’m not completely satisfied. I’ll be commenting on that in more detail next week.

  6. Amanda rankin
    December 7th, 2013 at 18:20 | #9

    We’re you able to do a background search into the other seven members ? Will you be providing comment on the balance of committee members through the duration of the IOM contract , that you identified as being problematic in your previous article where you mention a game of musical chairs ?

    • Jennie Spotila
      December 7th, 2013 at 19:42 | #10

      For the background on the other seven members, see this post: http://www.occupycfs.com/2013/12/05/iom-panelists-the-unknowns/

      Yes, I will be providing comment on the balance of the IOM committee. Although the Musical Chairs post was about the CFS Advisory Committee balance, the same FACA rule applies to the IOM panel. It must have a balance of viewpoints.

  7. John Gabor
    December 8th, 2013 at 02:16 | #11

    @Jennie Spotila
    I actually started with an infectious disease expert and was referred by him to a GP who really is an ME, FM & Pain Specialist. But because the treatment of ME is not considered a real medical specialty by the medical system, he cannot take that title. Frankly, I am tired of having to explain to the both specialists and GPs what is ME or even what is CFS. Just had to do this again today at a walk-in clinic. Actually had to literally spell it out to the GP. He said he had never heard of either. Not sure how that could be possible in a country where over 1% of the population has ME. Usually most MDs have heard of ME or CFS but don’t understand it. The fact that a 60 something MD said he had never heard of either is mind boggling.

    I am not expecting that this IOM contract will do anything to rectify it – even if about 50% of the ‘experts’ are truly ME experts. The state of the CFSAC now is a good indicator of where the HHS is heading with this contract – more time and money wasted with very little to show and more patients giving up hope. Whether ME kills directly or indirectly is of little consequence in the long run. Either way, there has been too many unnecessary and tragic deaths of ME patients.

  8. John Gabor
    December 8th, 2013 at 02:20 | #12

    Amanda rankin :
    We’re you able to do a background search into the other seven members ? Will you be providing comment on the balance of committee members through the duration of the IOM contract , that you identified as being problematic in your previous article where you mention a game of musical chairs ?

    I am concerned about the others as well. But as I said above, I am more concerned with the political situation at the HHS. Even if the IOM actually comes up with something useful for patients, researchers and MDs, I am very skeptical that the current HHS leadership will allow it to move forward.

  9. Tina
    December 8th, 2013 at 11:11 | #13

    PANDORA Org has been researching the problem of now specialty for ME/CFS and similar doseases. We have talked to medical school deans, clinicians for Lyme and ME/CFS experts about how to solve that problem. We also spoke to a patient organization about their attempt. The question is whether to create a new specialty or try to get a medical professional society for an existing specialty to embrace these diseases as a subspecialty. If the latter, then which one. And if there are no procedures to make money off of, what is the incentive? Also, it does no good to have the specialty or subspecialty without it being on medical schools. I am actually hopeful that since the IoM committee is also suppose to recommend how to distribute the new definition that we get them to recommend a specialty to adopt is and that a medical professional org listens because IoM is so respected in general and because so many on the committee have affiliations with universities.

  10. Ess
    December 8th, 2013 at 15:14 | #14

    This could potentially be ANOTHER PROBLEM; i.e., deeming that PSYCHIATRY is the specialty ‘slot’ for ME/CFS–and wrap it all up in a pretty bow.

  11. Ren
    December 8th, 2013 at 17:19 | #15

    As added info, Gemeni on PR posted about Natelson (post 19):

    “You might be interested in Natelson’s bio, i.e., his Post-doctoral training/interest in Behavioral Medicine:

    http://painandfatigue.com/dr_natelson.html

    PubMed search of his CFS articles (119) of which approx. 35 are published in psych journals like:

    Psychosomatic Medicine, Journal of Psychosomatic Research, Journal of Affective Disorders
    Journal of Nervous and Mental Disease, Psychiatry Research, Others…

    Excerpts from his work:

    “An individual’s psychiatric history should be considered when attempting to understand the factors maintaining disability in CFS.” PMID 12819552

    “Although the ailment clearly can occur after severe infection, no convincing data exist to support an infectious (or immunologic) process in disease maintenance.” From “A Status Report on CFS”, 2002 PMID 12194905

    Presenting at Mass. CFIDS recently, he stated his preference for the term “Medically Unexplained Symptoms”

    http://forums.phoenixrising.me/index.php?threads/a-close-look-at-some-of-the-iom-provisional-panel-nominees.26858/

    • Jennie Spotila
      December 8th, 2013 at 19:27 | #16

      This is what I hoped for as part of publishing the profiles: that others would dig in more deeply. I think we need to draw conclusions based on a fair examination of the facts. For example, other ME/CFS experts have published in at least some of those journals. Dr. Jason has published in Psychosomatic Medicine. And given the known difficulty of ME/CFS experts getting published in peer reviewed journals, I think we should focus on what the papers say and not where they were published.

      Saying that Dr. Natelson has a “preference for the term ‘Medically Unexplained Symptoms’ takes his comments completely out of context! We linked to the summary of that talk in the original post, but here is it again: http://www.masscfids.org/resource-library/15-conference-reports/394-dr-benjamin-natelson-is-keynote-speaker-at-mass-cfidsme-a-fm-association-

      The full context for that quote is:

      The lumper’s approach groups all chronic conditions, such as CFS or FM, in which a person has physical symptoms that involve more than one part of the body but seemingly without physical cause, as a somatization disorder. Doctors are inclined to diagnose pain and fatigue related syndromes, which currently have no diagnostic test, as Somatic Amplification, a tendency to psychologically perceive normal sensations as overly intense.

      Dr. Natelson feels that Somatic Amplification has a derogatory connotation and should be replaced with Medically Unexplained Symptoms. In fact, the rate of somatic disorder reported in CFS patients depends entirely on whether the cause of the symptoms is interpreted as psychological or physical by the physician who is making the diagnosis.

      So his preference for Medically Unexplained Symptoms is to replace the term “somatic amplification” NOT ME/CFS. Another quote from that talk: “Natelson’s hypothesis is that some CFS patients, especially those that have no accompanying psychological disorders, have brain dysfunction or encephalopathy.” And then: “Some CFS patients have poorer neuropsychological test results, abnormal brain MRI imaging, poorer function in health related quality of life, wider reduction in brain blood flow, more abnormal spinal fluid results, and higher levels of ventricular lactate, all which point to a brain disease.” Given his work on brain imaging and spinal fluid, I don’t see how we can draw the conclusion that he is in the psychogenic or behavioral school.

  12. Ess
    December 8th, 2013 at 19:20 | #17

    EXTREME CONCERNS WITH THE WHOLE CONCEPT OF THE IOM CONTRACT AND ITS INTENDED OUTCOME!!! THE EXPERTS AND RESEARCHERS RAISED THEIR CONCERNS AT THE OUTSET FOR US. IOM CONTRACT–DISASTER IN THE MAKING–CANCEL THE CONTRACT!

  13. Ren
    December 9th, 2013 at 03:34 | #18

    Thank you for further clarification/insight (post 16).

  14. AC
    December 9th, 2013 at 10:57 | #19

    There’s concern expressed elsewhere about Margarita Alegria’s involvment in studies that used the ‘N’ word ~ Neurasthenia. Choice of the term ‘Neurasthenia’ in these studies was predicted by the data sources; that is the data sources, not the researchers classified diseases, including a classification of Neurasthenia. This was only one of a number of classifications Alegria and colleagues used in their analysis of cultural differences in healthcare uptake. Researchers have to use the data that’s available, not what data might be wished the.

    Someone with a clear perspective on excluded minorities and health inequalities might be thought an asset for patients in the IOM process. http://www.4researchers.org/contributors/2924

  15. December 9th, 2013 at 13:18 | #20

    Your last posts have been superb, Jennie. Many thanks to you (and your team). I was interested to see that Dr. Lerner is on the panel because, unlike the others I’m familiar with on this list, he has a very narrow view of the cause of ME/CFS (this is more of an observation than a criticism). Not only did I wear a holter monitor for 24 hours with no abnormal results, but I was on Valcyte for an entire year. After some initial improvement, I became so much worse that the prescribing doctor had me discontinue it. Today (about eight years later), I’m back to being as sick as I was when I started the Valcyte, but it took me a couple of years to return to this level (which is plenty sick enough!. I was given it because my blood work showed an inactive HHV-6 infection (an elevated IgG as opposed to IgM).

    • Jennie Spotila
      December 9th, 2013 at 13:21 | #21

      Thank you, Toni. Your experience with antivirals in not unique, although there are also certainly many patients who have benefited (as Lerner has published). I agree that Dr. Lerner’s view seems to be rather narrow, but I hope that he will be able to offer his experience and look beyond it as well. All of the panelists will have to be willing to recognize and set aside their own biases.

  16. Ren
    December 10th, 2013 at 11:37 | #22

    AC wrote, “Someone with a clear perspective on excluded minorities and health inequalities might be thought an asset for patients in the IOM process.”

    I would have thought that in an age of feminism that uber-educated women, especially, would rally behind their “sisters” with ME. However, we instead have a feminist literary acedemic who equates ME patients to a narcissistic UFO cult, as well as another female historian who asserts that ME is a made-up diagnosis assigned to female patients by male doctors/researchers who believe females are weak.

    IMO, if Dr. Alegria truly understands or comes to understand the essence of ME – its physical and (often traumatic) social consequences, then IMO, the ME community would open-heartedly welcome her as an ally.

    Again IMO, however, anyone who doesn’t understand the frustration and shrewd skepticism of the ME community doesn’t understand how truly horrific ME is for hundreds of thousands – perhaps millions of individuals. Skepticism is also an instinct for survival and a strong will to end this “plague”. And not just for us now – but to prevent others from suffering this fate.

    I applaud and am thankful that so many are so seriously exploring the politics, science, economics, etc. at hand.

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