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Investigating the Investigators of the Upcoming Post-Infectious NIH Study

Discussion in 'Active Clinical Studies' started by Valentijn, Feb 23, 2016.

  1. Old Bones

    Old Bones Senior Member

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    Dr. Joseph Snow is currently staff scientist and neuropsychologist in the Mood and Anxiety Disorders Program and Lab of Brain and Cognition of the National Institute of Mental Health, National Institutes of Health in Bethesda, Maryland. Dr. Snow's responsibilities include evaluating the neuropsychological functioning of NIH patients either for clinical reasons or as part of NIH protocol driven research. He has co-authored many scholarly publications on a variety of topics in the field of neuropsychology and has served as an ad hoc reviewer for several scientific journals.Dr. Snow is a member of the International Neuropsychological Society.

    As a result of my brief research into Dr. Snow, I see nothing that causes me alarm. He doesn't seem to have the mindset that physical illness is caused by psychiatric problems. Here are two examples of research he was involved in.

    A NEUROPSYCHOLOGICAL ASSESSMENT OF PHOBIAS IN PATIENTS WITH STIFF PERSON SYNDROME
    http://www.smssupportgroup.co.uk/PDFs/SPS_Specific_Studies/Neuropsychological Assessment of Phobias in SPS.pdf


    "Clinical experience in making DSM diagnoses cautions us in diagnosing anxiety disorders in SPS patients, given the reality of their physical disability and the unpredictable nature of their “freezing” and falling episodes. Although at the time of examinations, all patients were symptomatic, in spite of receiving treatment for their motor symptoms, the possibility that muscle relaxants or antianxiety agents had masked some of their fears and confounded the proper assessment of an anxiety disorder or neurocognitive dysfunction cannot be excluded. The absence of premorbid phobias, however, and the realization that the fear of falling is realistic strongly suggest that the anxiety in SPS patients is secondary to the primary neurologic disorder rather than due to a primary inherent phobia, as justified by the reduced GABA level. This conclusion is also supported by our clinical trial with IVIg, which demonstrated that when the physical signs of stiffness improved, so did the anxiety."

    NEUROPSYCHOLOGICAL CONSEQUENCES OF CARDIOVASCULAR DISEASE

    http://link.springer.com/chapter/10.1007/978-1-4615-1287-5_4#page-1
    (little text available here)

    https://books.google.ca/books?id=olkFf4BeDKoC&printsec=frontcover&dq=google books medical neuropsychology: second edition&hl=en&sa=X&ved=0ahUKEwiW6rTnpY7LAhUO3GMKHaFxDsAQ6AEIJTAA#v=onepage&q=google books medical neuropsychology: second edition&f=false
    (text quoted found here)

    “ . . . there has been relatively less investigation of the impact of cardiovascular disease on neuropsychological function prior to clinically evident cerebrovascular events. It has become increasingly apparent, however, that even very early manifestations of cardiovascular disease . . . are associated with subtly diminished neuropsychological function. . . . In this chapter, we discuss the impact of various dimensions of cardiovascular disease and several of its medical and surgical treatments on neuropsychological function.


    Results of the numerous studies in this area generally reveal that hypertensives perform more poorly than normotensives across multiple domains of neuropsychological function.
    Some of the largest and most consistent effects are noted with the domains of learning and memory, attention, abstract reasoning and other executive functions. Compromised performance is also apparent on tests of visuospatial, perceptual and psychomotor abilities. To date, less support has been found for a relation between hypertension and performance on tests of general verbal intelligence or language abilities. Results of longitudinal studies indicate that deficits in neuropsychological performance persist or worsen over time. Indeed, chronic hypertension has predicted compromised cognitive function at follow-ups of up to 15 to 30 years. The impact of hypertension can range from small and subtle to seemingly large. . . . there is some suggestion that those hypertensives who are characterized by markers of high levels of sympathetic nervous system activity may perform particularly poorly on certain psychomotor tests. . . . For example, hypertension may be associated with subtle alterations in brain structure and function. . . .To summarize, hypertension has been associated with compromised performance involving many domains of neuropsychological function. . . .Subtle alterations in brain structure and function and other physiological factors are apparent in hypertensives and may account for their diminished cognitive function."

    Although I am not a scientist, my lay-person's interpretation of the above two studies Doctor Snow was involved with placed the physical illnesses (Stiff Person Syndrome and Cardiovascular Disease) as impacting the neuropsychological problems, and not the reverse. This leads me to believe he belongs in @Valentijn 's "Looks Good" category.
     
    Last edited: Feb 23, 2016
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  2. taniaaust1

    taniaaust1 Senior Member

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    Last edited: Feb 24, 2016
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  3. Valentijn

    Valentijn Senior Member

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    Looks good to me too. I even found a summary of one of his talks about in 2003 CFS and OI written by Rich van Konyenburg (richvank on the forum): http://www.prohealth.com/library/showarticle.cfm?libid=10022
     
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  4. searcher

    searcher

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    For those of you comfortable editing wikis and who want to help out, please help us make a lot of this information centralized at http://me-pedia.org/wiki/NIH_Post-Infectious_ME/CFS_Study#Investigators. We have been working on creating crowd-sourced wiki pages for all of the investigators. Some already have a good amount of information (like Walitt) but others don't have much.

    I think it would be great to have key studies linked to from each of the investigator's page, along with links to the most relevant articles about the individuals researchers/ videos of talks they have given.

    Thanks all!
     
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  5. A.B.

    A.B. Senior Member

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    I'm glad that the person that will be doing neuropsych evaluations appears to be reasonable and down to earth. It could have been a big problem if it were otherwise.
     
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  6. Valentijn

    Valentijn Senior Member

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    It's the first one, and not the 2nd. But I've looked over his stuff, and there's nothing quacky. Just straight-forward genetic research.
     
    Last edited: Feb 23, 2016
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  7. duncan

    duncan Senior Member

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    Hmmm...@Old Bones, could there by more than one Dr. Joseph Snow who is a psych at the NIH? That pic doesn't match what I have seen of him.
     
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  8. Old Bones

    Old Bones Senior Member

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    @duncan You are correct about the photo, so I've edited my original post to delete it. I haven't been able to find a photo of the Dr. Joseph Snow we are interested in. Any ideas where to look? What's most important is that the content of the post is accurate, and I've confirmed it is.
     
    Last edited: Feb 23, 2016
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  9. Liz_999

    Liz_999

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    I'll check Dr. Eunhee Kim (Biostatistics), Dr. Mary Lee (Neurobehavioral Psychiatry), Dr. Tanya Lehky (Electromyography - Neurology).
     
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  10. duncan

    duncan Senior Member

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    Profiling Dr. Adriana Marques - with an eye toward potential problems for the ME/CFS community - is a little bit like trying to sway an entire population about reevaluating its stance on a disease.

    There are few relevant documents she has authored alone by herself that I know of (although there is a book out there, somewhere, I think)

    As a co-author, there are many publications with her name that some believe have helped serve to marginalize the concept of chronic or post-treatment Lyme. A handful of examples:
    "Chronic Lyme Disease: An Appraisal" Infect Dis Clin north Am, 2009 June 1
    "Treatment Trials For Post-Lyme Disease Symptoms Revisted" Am J Med 2013 Aug 11
    "The Reply" Am J Med 2014 Feb

    These and others support the notion that Bb is unlikely to exist after IDSA recommended treatment, and therefore it is not only useless to treat such cases with abx, it may actually be harmful to do so.

    Her frequent co-authors read like a Who's Who of chronic Lyme denialists: Phil Baker, Eugene Shapiro, Gary Wormser, John Halperin, Raymond Dattwyler. Countless Lyme patients groan at the mere mention of these names. Some of her co-authors are also authors of the IDSA Lyme Guidelines, which as I've noted elsewhere, reduces chronic Lyme symptoms to just the "aches and pains of every day life.". One is a former NIH Lyme Team Head (her predecessor) who referred to Lyme patients in an email (revealed thx to an FOI request) as "loonies". Many feel there has been a concerted effort to discredit the idea of Lyme persistence, and those patients who suffer from it have been collateral damage.

    One has to wonder why she is involved with an ME/CFS study, when her own area is overtly controversial.
     
    Last edited: Feb 23, 2016
  11. Valentijn

    Valentijn Senior Member

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    Has she suggested that the symptoms are psychosomatic, or been involved in papers with methodological issues? Can't condemn her just for not finding Lyme post-treatment, or researching with certain people.
     
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  12. duncan

    duncan Senior Member

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    Well, yes, I can and I do condemn her for her position and the people she plays with. :D

    This group seems to me more intent on downplaying symptom severity, much like the "normal life" thing. I have even seen SW's name invoked in that cause (which was strange as I knew him from ME/CFS)

    I would NOT invite her or any member of the Lyme team to this NIH effort. Too many question marks.

    But that's just me. Sigh.
     
    Last edited: Feb 23, 2016
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  13. Valentijn

    Valentijn Senior Member

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    I agree regarding question marks. Nothing overtly bad jumps out, but nothing good either. She seems to take everything at face value, and in an extremely conservative way. I put her in the "Uncertain" category for now.
     
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  14. Liz_999

    Liz_999

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    [​IMG]
    Mary R. Lee, M.D.

    Staff Clinician
    telephone: 202-641-6068
    e-mail: leemary@mail.nih.gov

    Dr. Mary Lee received her medical degree from Columbia University College of Physicians and Surgeons in 1989. She completed residency in internal medicine at Columbia Presbyterian Medical Center and subsequently completed a psychiatric residency at George Washington University. Dr. Lee is board certified in psychiatry, internal medicine and addiction medicine. She joined the CPN laboratory in November of 2012. Her research has focused on the effect of intranasal oxytocin on drug craving, reward learning, and emotional processing in drug dependent and schizophrenic patients. In addition, she has investigated the neurobehavioral effects of genetic polymorphisms, COMT and OPRM, on reward processing in smokers and drug users. Her current research is on the role of oxytocin in alcohol and drug use disorders and the use of TMS to understand the neurocircuitry of nicotine addiction. She is the PI of a translational and clinical project studying the role of oxytocin in alcoholism for which she received a NIH Bench-to-Bedside (B2B) Award by the Office of Behavioral & Social Sciences Research (OBSSR).

    ----------------------------------------------------------------------------

    A list of her publications can be found here: http://www.pubfacts.com/author/Mary R Lee

    As the description above says, she's mainly interested in addiction and how neurotransmitters, hormones and genetics influence behaviour. She doesn't seem to have any interest in/experience with ME/CFS or fibromyalgia. There's nothing on psychogenic or somatoform disorders in her publications and I couldn't find anything that would tie her to the biopsychosocial school.
     
  15. LiveAgain

    LiveAgain Senior Member

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    I don't know if these help but a few more things on Hallett.

    Hallett on his "FMD" patients:

    "Treatment is often very difficult. The first problem is telling the patient what is wrong. This is NOT easy, and patients typically do not want to hear that there might be a psychiatric problem. Indeed, often when patients hear this, they get angry and go off to find another doctor. It often seems that a patient would rather hear that he has cancer than a conversion disorder!" Uh, maybe because they're truly sick and don't want to hear that nonsense? He makes brief mention of Chronic Fatigue Syndrome.
    https://books.google.com/books?id=JQ0-jINVqSMC&pg=PA12&lpg=PA12&dq=psychogenic+movement+disorders+and+other+conversion+disorders+chronic+fatigue&source=bl&ots=Fr9x88-x9l&sig=Z0x6d_j03alFjfHX49_KDnhKbkc&hl=en&sa=X&ved=0ahUKEwiG9pyLgo7LAhVFdz4KHVUJC-o4ChDoAQgbMAA#v=onepage&q=psychogenic%20movement%20disorders%20and%20other%20conversion%20disorders%20chronic%20fatigue&f=false

    A 2009 article on functional neurologic symptoms/ conversion disorder/ psych written by Dr. Jon Stone and reviewed by Hallett makes brief mention of Chronic Fatigue Syndrome. "CFS/ME" and Fibromyalgia are listed as a functional disorders and says: "Fatigue is the commonest symptom in association with other functional neurological symptoms. c Chronic fatigue syndrome (also referred to in UK government documents as ME or myalgic encephalomyelitis)) can be diagnosed in a patient with disabling fatigue lasting longer than six months in the absence of another cause." The author thanks Michael Sharpe, eek... so Hallett has at least loose association to those who are no friends to ME. I don't know how to link it but its called Functional Symptoms in Neurology 2009;9:179–189. doi:10.1136/jnnp.2009.177204

    Hallett was involved in a research study in the late 90's where they found post exercise similarities between CFS and depressed patients.
    http://www.ncbi.nlm.nih.gov/pubmed/8960719
     
  16. Liz_999

    Liz_999

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    Tanya Lehky, M.D. (T Lehky, TJ Lehky, Tanya J Lehky)
    E-mail: lehkyt@ninds.nih.gov

    Assistant Clinical Director of Medical Affairs at NINDS Division of Intramural Research

    Director of Electromyography (EMG) Lab, NINDS, Clinical Neurophysiology Research Program

    The EMG Section engages in collaborative clinical research on peripheral and neuromuscular disorders. The section carries out nerve conduction studies (NCS), electromyography (EMG), transcranial magnetic stimulation (TMS) and autonomic screening studies to diagnose and characterize patients with a wide spectrum of disorders. In addition to its primary mission to provide testing for clinical diagnosis, the section carries out advanced neurophysiologic testing for the characterization of newly discovered disorders and engages in research on electrodiagnostic outcome measures for clinical trials, such as motor unit number estimation (MUNE) and central conduction time measurements.

    Faculty Information: Capt. Lehky, M.D. is a Commissioned Corps officer in the EMG Section of the Office of the Clinical Director, NINDS. She completed her medical degree at Georgetown University in 1985, followed by residency training in Internal Medicine at Children's Hospital of San Francisco and in Neurology at the University of Maryland. From 1991-1995, she participated in a clinical fellowship training in the Neuroimmunology Branch, NINDS; in 2000, Dr. Lehky completed an EMG fellowship in the EMG Section, NINDS. After serving as a staff neurologist at the National Naval Medical Center for several years, she returned to NINDS and has been directing the Clinical EMG laboratory since 2006.

    Publications: https://scholar.google.com/scholar?start=0&q=tanya lehky&hl=en&as_sdt=0,5&as_vis=1

    -------------------------------------------------------------------------------------------------------

    Seems to be firmly on the biomedical side of research. Has published on MS and a variety of other neurological diseases.

    The only marginally notable thing I found was a talk at an organisation called Painconnection, which promotes mindfulness and all kinds of alternative therapies. I couldn't find the talk, but from the summary by Painconnection itself it seems unremarkable.
     
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  17. Liz_999

    Liz_999

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    [​IMG]

    Eunhee Kim, PhD
    Assistant Professor of Biostatistics

    Department of Biostatistics and Center for Statistical Sciences Brown University
    Email:ekim@stat.brown.edu, Eunhee_Kim@brown.edu

    Office of Biostatistics, NINDS
    Email: eunhee.kim@nih.gov

    He LinkedIn profile says she works for NIH and links to her Brown Uni profile: https://www.linkedin.com/in/eunhee-kim-4a994513

    Eunhee Kim, PhD, is an Assistant Professor of Biostatistics at Brown. Her methodological research interests include semiparametric and nonparametric methods for evaluating biomarkers and medical diagnostic tests, classification and prediction methods, and longitudinal data analysis.

    Her current research collaborations include work in the areas of cancer, maternal and child health, and women's health. She is a lead statistician of the American College of Radiology Imaging Network (ACRIN) where she conducts clinical research to evaluate diagnostic imaging and image-guided therapy for cancer.

    Dr. Kim teaches Linear and Generalized Linear Models, Advanced Methods for Multivariate Analysis, and Longitudinal Data Analysis in the Department of Biostatistics.

    During her sabbatical in 2013, she worked at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) investigating a statistical method to predict developmental outcomes in children.

    INTERESTS
    My broad methodological research interest lies in statistical methods in diagnostic medicine, classification and prediction methods, and longitudinal data analysis.

    Biomarker evaluation, classification and prediction, longitudinal data analysis
    : My first research focus is the statistical evaluation of biomarkers and diagnostic tests for disease classification and prediction.
    I am interested in developing statistical methods that integrate multiple biomarkers, noting that different biomarkers can provide unique insights into disease mechanisms and newly discovered biomarkers can provide additional information for a specific disease. Motivated by this idea, I have developed semi-parametric transformation models that combine multiple biomarkers, possibly with detection limits.
    In recent years, my primary research interest has evolved into modeling longitudinal or repeatedly measured biomarkers in the follow-up study. Specifically, I have researched statistical methods to integrate longitudinally progressed biomarkers for evaluating treatment response. In this research, I aim to develop clinically meaningful measures to determine the effectiveness of using longitudinal biomarkers, which will enable a more robust assessment of treatment response.

    Statistical methods in diagnostic medicine
    : Given the recent technological advances in digital radiological imaging systems, numerous studies have sought to investigate whether new techniques provide a diagnostic performance superior to that of conventional imaging techniques. My second primary research interest focuses on developing statistical methods to assess and compare diagnostic techniques accommodating a particular situation or a study design.

    FUNDED RESEARCH
    Protocol Statistician, Biostatistics and Data Management Center of the American College of Radiology Imaging Network (ACRIN), 2009 to Present
    - The ACRIN is a national cooperative group, organized and funded by the National Cancer Institute in 1999 to conduct multi-center, interdisciplinary clinical evaluations of diagnostic imaging in the early detection and diagnosis, staging, and treatment of cancer. ACRIN's ultimate goal is to develop and disseminate scientific knowledge that will help reduce cancer-related mortality and morbidity and improve the quality of life of cancer patients.

    Key Projects:
    ACRIN 6698:
    MR Imaging Biomarkers for Assessment of Breast Cancer Response to Neoadjuvant Treatment: A sub-study of the I-SPY 2 TRIAL (Investigation of Serial Studies to Predict Your Therapeutic Response with Imaging and Molecular Analysis) (Role: Lead Statistician)
    ACRIN 6701: Repeatability Assessment of Quantitative DCE-MRI and DWI: A Multicenter Study of Functional Imaging Standardization in the Prostate (Role: Lead Statistician)
    ECOG 1412: Randomized Phase II Study of Lenalidomide R-CHOP (R2CHOP) vs RCHOP (Rituximab, Cyclophosphamide, Doxorubicin, Vincristine and Prednisone) in Patients with Newly Diagnosed Diffuse Large B Cell Lymphoma (Role: Imaging Statistician)


    From the NINDS Intramural Research, Clinical Trial Unit (CTU), website:

    Office of Biostatistics:
    The Office of Biostatistics (OB) is an office within the Clinical Trials Unit (CTU), Office of the Clinical Director (OCD) at the NINDS. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. The OB contributes to the NINDS mission by providing objective, high-quality statistical solutions through proper implementation of statistical methods and by promoting the use of rigorous quantitative methods. For additional information, contact Eunhee Kim, Ph.D.

    -----------------------------------------------------------------------------------------------

    She probably doesn't know what psychogenic means.
     
    Last edited: Feb 23, 2016
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  18. alex3619

    alex3619 Senior Member

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    One question I would like answered - who is pushing for the use of functional movement disorder, a problematic diagnosis, as a comparison arm? Does anyone know?
     
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  19. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    If findings from the NIH study are inconclusive or null, then not a physical disease, then Dr Mary Lee shifts from good to bad.

    There appears to be an acceptance that there will be conclusive findings of biomedical illness. Given small study size and vagaries of classification, it is highly likely there will be no such findings. In this outcome, Wallit can be given free rein, whether this is the stated objective of the study or not.
     
  20. Forbin

    Forbin Senior Member

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    I have no idea who is pushing FMD, but I did find this tribute page to the highly regarded Dr. Mark Hallett which says...

    Over the past 30 years, Hallett and the HMCS [Human Motor Control Section] have distinguished themselves in the study of the: [Several areas areas of study are listed including the study of the...]

    • Pathophysiology of psychogenic movement disorders (now directed by clinical fellow Carine Maurer)

    Carine Maurer was also on Dr. Nath's list of investigators

    http://irp.nih.gov/catalyst/v22i4/human-motor-control
     
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