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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. Valentijn

    Valentijn Activity Level: 3

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    The details for the investigators is starting to get lost in the spam of the other NIH study threads, so here's a thread just for them :nerd:

    investigators2.jpg


    PROBLEMS (6)
    Dr. Brian Walitt (Pain, Fibromyalgia) - He has done little or no direct research on CFS, but has clearly stated that CFS is a somatoform disorder in other papers. He attributes biological findings in certain diseases (FM, CFS, post-chemo, IBS, etc) as being psychosomatic, even when it makes no sense.
    Gene expression profiles of fatigued fibromyalgia patients with different categories of pain and catastrophizing
    Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy
    What Is Fibromyalgia, How Is It Diagnosed, and What Does It Really Mean?

    Dr. Leorey Saligan (Fatigue Nurse) - Reports of fatigue and pain are a result of catastrophizing in CFS and similar diseases. "The unnecessary increase of attention to the symptom in catastrophizers may influence the person’s motivation to perform activities of daily living, making catastrophizing as an ideal behavioral marker for central fatigue." He co-authored a study with Walitt (and others) where genetic expression was interpreted to correlate with the catastrophizing of fibromyalgia symptoms.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3553502/
    http://link.springer.com/article/10.1186/ar4395/fulltext.html
    http://www.nursingoutlook.org/article/S0029-6554(13)00062-6/abstract

    Dr. Fred Gill (Internist, Infectious Disease) - Has done no CFS research, but has treated patients in the past. He firmly believes in minimal testing, interpreting abnormal results as false positives, and treating with CBT and GET.
    http://videocast.nih.gov/Summary.asp?File=16477&bhcp=1
    https://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Gill.htm
    http://www.cfscentral.com/2011/02/training-day.html

    Dr. Carine Maurer (Psychogenic Neurology) and Dr. Mark Hallett (Motor Control Neurology) - Strong believers in psychogenic disorders. They wrote a paper where basic physiology is ignored so that they can describe movement alterations during partial restraint as being akin to "whack-a-mole". They even suggest naming it the "whack-a-mole" sign, which seems rather contemptuous of the patients.
    http://onlinelibrary.wiley.com.sci-hub.cc/doi/10.1002/mdc3.12177/full
    http://www.sciencedirect.com.sci-hub.cc/science/article/pii/S1353802015002679
    http://www.neurology.org/content/84/14_Supplement/P3.008

    Dr. Mark Hallett also has numerous financial ties, including to profit-driven health care marketing (Allergan/Neurotoxin Institute) and Merz Pharma. Also some patents related to the treatment of functional disorders. (see notes in papers linked above). He has classified CFS as a psychogenic disorder. In one paper, he concluded that CFS patients reduction in physical performance was indicative of being similar to patients with depression. That study was under-powered, with two control groups and many comparisons. 4 of the healthy controls were the investigators themselves.
    Psychogenic Movement Disorders - The Tandon Oration
    http://www.neurology.org/content/47/6/1410.full

    Dr. Silvina Horovitz (Neuroimaging) - She works on Dr Mark Hallett's team, and has co-authored many pieces with him. She's not listed as an author on the worst ones (above), but is an author for a piece where 19 extra metabolites were looked at to reduce the ability to find a statistical association with GABA. An abstract poster (no full paper published) declared that patient in the study had "clinically definite" functional movement disorder, and that FMD patients have voluntary control over their movements, but merely a "reduced sense of agency".
    http://onlinelibrary.wiley.com.sci-hub.cc/doi/10.1002/mds.23306/full
    http://www.neurology.org/content/84/14_Supplement/P6.080

    UNCERTAIN: (2)
    Dr. Jeffrey I Cohen (Virology) - He was one of several authors involved in a bit of a weird study attempting to followup on the controversial XMRV findings. His study declared no relationship between Fukuda CFS and XMRV, but found some sort of XMRV reaction in 15% of patients and 0% of controls. Due to the low number of participants and several comparison groups, at least 30% of patients would need a positive result for it to be statistically significant. It's a bit dodgy that the study was underpowered, and declared a null result instead of a need to followup with a properly powered study.
    http://virologyj.biomedcentral.com/articles/10.1186/1743-422X-8-450

    He co-authored around two dozen papers with Dr Stephen Straus, has thanked him in others, and was a co-author for Straus' obituary. It's not clear if he shares Straus' views about ME/CFS, but it looks like they worked closely together in researching viruses. No hint of psychobabble from Cohen.

    Dr. Adriana Marques (Infectious Disease, Lyme) - Involved in post-treatment/chronic Lyme research finding no Lyme. She seems to take a very conservative stance, and possibly a bit naive about summarizing the "placebo" response present in other trials(IV fluids can in themselves have a physiological response). But at least she presents a thorough accounting of information and alternatives with no signs of spin or psychobabble. I can't see how she'd be an asset to the study, but she doesn't look like a problem either.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430045/


    LOOKS GOOD: (20)
    Dr. Avindra "Avi" Nath (Neuroimmunology)- Not a whiff of psychobabble, even when opportunity arises. Someone did report a disappointing appointment with him a few years ago.
    http://www.cortjohnson.org/blog/2013/09/13/no-stone-unturned-chronic-fatigue-syndrome-chronicle-12/

    Dr. Ana T Acevedo (Physio/Rehab) - Note that she is a "physiatrist," not a "psychiatrist". There's very little research available, but she takes proven biological diseases seriously, albeit approaches treatment of them at least sometimes in a psychosocial ("social cognitive") manner.
    http://hqlo.biomedcentral.com/articles/10.1186/1477-7525-11-55

    Dr. Ian Lipkin (Virus Hunter Extraordinaire) - He's been putting a lot of effort into crowd-funding, and seems very determined to look for viruses, etc, in ME/CFS. No psychobabble!

    Dr. Steve Jacobson (Neuroimmunology) - Lots of stuff involving HHV-6, at least one paper on the Lake Tahoe etc ME/CFS outbreaks. No psychobabble.
    http://archinte.jamanetwork.com/article.aspx?articleid=616508

    Dr. David Goldstein (Neurocardiology - Dysautonomia) - Lots of work in Orthostatic Intolerance. He gave a talk about OI in CFS in 2003, and sounded pretty good based on a summary by Rich van Konyenburg (richvank).
    http://www.prohealth.com/library/showarticle.cfm?libid=10022

    Dr. Joseph Snow (Neuropsychological Evaluation) - Cautions against diagnosing psych disorders when the reaction (anxiety) is a normal result of the physical disease. No psychobabble.
    http://www.smssupportgroup.co.uk/PDFs/SPS_Specific_Studies/Neuropsychological Assessment of Phobias in SPS.pdf

    Dr. Johnathan J Lyons (Allergic Diseases) - Research into Primary Immune Deficiency Diseases, which are basically genetic. No psychobabble.

    Dr. Mary R Lee (Neurobehavioral Psychiatry) - Research into alcoholism and oxytocin. Frequent mention of psychosocial factors, but not in physical disease. Has used coping-based CBT in research for depression. No overt psychobabble, but no clear legitimate function in the NIH post-infection study.
    http://ps.psychiatryonline.org/doi/full/10.1176/ps.50.7.948

    Dr. Tanya Lehky (Electromyography - Neurology) - A lot of her work involves both the nervous system and immunology, including some genetic diseases. No psychobabble.

    Dr. Eunhee Kim (Biostatistics) - Pure biostatistics, no apparent involvement in psychobabble or spinning results.

    Bart Drinkard (CardioPulmonary & Exercise Physiotherapist) - Lots of studies with CPET, including exercise trials. No psychobabble or spinning of results. One CFS + RA + Polymyositis paper which was pretty good, and discussed all three diseases on equal terms. The paper was careful to mention that the performance of the three groups was lower than would be explained by deconditioning.
    http://www.sciencedirect.com.sci-hub.cc/science/article/pii/S1934148209004365

    Dr. Joshua Milner (Genetic Pathology, Allergy) - No apparent prior involvement in ME/CFS or similar diseases. He's done a lot of investigating of non-contact allergies with a genetic origin. He was involved in a study regarding connective tissue disease. No spin or psychobabble.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016972/

    Dr. Luigi Ferucci (Gerontology) - Studies aging and fatigue, and has described CFS as a disease, and distinct from typical fatigue. No signs of spin or psychobabble.
    http://www.boston.com/news/health/articles/2008/10/13/way_too_tired/?page=full
    http://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2010.02811.x/full

    Dr. Bryan Smith (Clinical Neurologist) - It looks like he's involved in looking at the neurological impact of diseases associated with infections, such as Ebola, MS, HTLV-1, etc. He works directly on Avi Nath's team as a "Staff Clinician", and has published with him. Pure biology, no psychobabble.
    http://www.neurology.org/content/84/14_Supplement/P5.235

    Dr. Stephen Sinclair (Affective Cognitive Neuroscience, Clinical Psychologist) - His research deals with (actual) behavioral disorders in youths, attempting to find cognitive or brain abnormalities which correlate with them. The team he works with does seem genuinely interested in finding abnormalities, and presents null results prominently instead of hiding them. The research also seems completely focused on the discovery of abnormalities, with little or no interest in promoting particular treatments.
    http://ajp.psychiatryonline.org.sci-hub.cc/doi/full/10.1176/appi.ajp.2015.15020250
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3941702/

    Dr. Penelope "Penny" Friedman (Clinical Patient Care) and Stacey Solin (Internal Nurse Practitioner) - Both are part of Dr Fred Gill's team, which provides patients participating in research projects with evaluation, care, and coordination of care. No research has been found from Stacey Solin, and nothing relevant from Dr Friedman.
    http://clinicalcenter.nih.gov/about/news/newsletter/2008/nov08/newsletter.html

    Dr. Neal Young (Hematology) - Focuses on immunology, with research into bone marrow failure diseases, and immuno-suppressive treatments. He's published a critique of publication bias which favors positive results, and has been praised as someone who likes to solve mysteries.
    http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0050201
    https://www.washingtonpost.com/loca...376dc6-e58a-11e1-936a-b801f1abab19_story.html

    Dr. Jay Chung (Metabolism of Aging)
    - Investigates the decreased ability to burn calories with aging, and the molecular mechanisms resulting from calorie restriction. Purely biomedical, no psychobabble.
    https://nihrecord.nih.gov/newsletters/2014/01_03_2014/story5.htm

    Dr. Eugene Major (Virology, Neurology) - Previously investigated viral causes of cancer, and now researches viruses which cause progressive multifocal leukoencephalopathy or affect the nervous system.

    BEING INVESTIGATED: (1)
    Dr. Wendy Henderson (Digestive Disorders Nurse) by @Cheshire

    UNINVESTIGATED: (1)
    Dr. Elizabeth Unger (CDC - Chronic Viral Disease)
     
    Last edited: Mar 2, 2016
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  2. Sasha

    Sasha Fine, thank you

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    How sad that we should need this endeavour but, given the initial study design, it's clear that we do.
     
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  3. Valentijn

    Valentijn Activity Level: 3

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    I'll update the first post as more info comes in, or as errors are pointed out. If looking into one of these doctors, please post first so that people don't waste their time duplicating each others' efforts. It can be useful to google for their name + "CFS", "neurasthenia", "psychosomatic", and/or "fibromyalgia" or similar. Using "NIH" can help narrow down the results on google.

    To get a general feel for their research, Google Scholar is a great resource. Keep an eye an out for the subjects listed above, and a tendency for the authors to explain things in a psycho-social context. Confident assertion of null results from underpowered (small) studies are also a red flag.

    Please read and summarize their research or other sources which indicate their beliefs. Links to back up that summary are helpful, but cutting and pasting large amounts of text is usually not necessary.
     
    Last edited: Feb 23, 2016
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  4. Denise

    Denise Senior Member

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  5. Valentijn

    Valentijn Activity Level: 3

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    Yeah, I read that one. But I think the three listed are a bit stronger in showing his opinions clearly, whereas that one is a little more (pseudo-)historical. And I didn't want to cite every possible paper, which would get very spammy very quickly.
     
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  6. Denise

    Denise Senior Member

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    Okay.
    (Part of my concern was Walitt quoting E. Shorter, Per Fink, Schroder, Wessely etc.)
     
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  7. Gijs

    Gijs Senior Member

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    Untill the time there is a real breakthrough we will stay stuck in the psychosomatic bullshit story and this kind of quackers. The quackers can say anything without objective proof because the are the professors and doctors. It is a psycho fairy tale. But they don't care, they think that is real science.
     
  8. taniaaust1

    taniaaust1

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    http://www.fibromyalgiaforums.org/fibromyalgia-doctors/us/ca/s-lake-tahoe/dr-jay-chung-md (a patient has added him to a fibro forum doctor list so I guess that's a good sign)

    Dr. Jay Chung, MD

    Doctor Specializes In:
    Fibromyalgia
    Doctor Type:
    Rheumatologist

    Details/Testimonial About the Doctor:
    Dr. Jay Chung, MD is a Rheumatologist that deals with Fibromyalgia patients out of his office in S Lake Tahoe, CA.
    This doctor specializes in the following discipline(s):
    • Adult Rheumatology
    • Internal Medicine
    ............

    He sounds interesting especially being in Lake Tahoe.
    .......

    He sounds more interesting the more one researches him. His past background is in genetics and he's interested in energy production, he's studied mitochondrial levels and other things to do with energy

    "
    http://www.nhlbi.nih.gov/research/intramural/researchers/pi/chung-jay/
    Background
    Jay Chung earned a B.S. in electrical engineering and a B.S. in biology from the Massachusetts Institute of Technology before receiving a M.D. and Ph.D. in genetics from Harvard Medical School, during which he received the James Tolbert Shipley Prize for Research in 1998. After an internship and residency in internal medicine at Brigham and Women’s Hospital, he became an endocrine fellow at the National Institute of Diabetes and Digestive and Kidney Diseases at the NIH where he worked with Gary Felsenfeld. He moved to the NHLBI in 1994 as an Investigator in the Laboratory of Biochemical Genetics.

    Research Interests
    Dr. Chung's primary research interest is in understanding how aging decreases our ability to burn calories and generate energy. This aging-related metabolic decline plays an important role in the development of obesity and obesity-related diseases such as type 2 diabetes and cardiovascular disease. Dr. Chung is working to understand the key molecular mechanisms that underlie the beneficial effects of caloric restriction in order to develop therapeutic strategies that mimic these effects and protect against metabolic diseases.

    Dr. Chung’s laboratory is focused on two key enzyme pathways—Sirtuin 1 (SIRT1) and AMP-dependent kinase (AMPK)—that are linked with metabolic diseases as well as with the effects of caloric restriction. He and his colleagues use transgenic approaches in cells and mice to manipulate these pathways and to monitor the metabolic outcomes. For example, caloric restriction results in a shift from the utilization of carbohydrates to stored fats as the primary energy source. By examining mitochondrial levels and gene expression patterns in cells and tissues, it is possible to observe the shift towards fat burning that arises from different genetic perturbations. "

    ....

    PubMed shows Dr Jay Chung has 32 different studies to his name (none to CFS or fibro).
     
    Last edited: Feb 23, 2016
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  9. A.B.

    A.B. Senior Member

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    @taniaaust1 , you need to make sure that you're actually reporting information about people working at the NIH, not the first doctor with the same name that comes up on Google.

    The NIH website is searchable and describes what various people do and their publications.
     
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  10. taniaaust1

    taniaaust1

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    That's why I clearly stated on my post that I don't know if its the same doctor. I don't know how to find out if its the one working at NIH .

    I'm just giving very basic overview of what comes up with their names and leave it to others to take it further. If we all work together it wont take long to figure all these doctors out.
     
  11. Valentijn

    Valentijn Activity Level: 3

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    Could you please list who you are looking at first, then look into them? And if you add "NIH" to the search, it should narrow it down a lot. I've also got the specialties of the investigators listed now in the first post, which should also help.

    And we need more information than a couple patient reviews. Their published research is a lot more relevant, but that might take hours to find and skim. We need details and accuracy more than we need speed.
     
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  12. taniaaust1

    taniaaust1

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    Dr Neal Young

    http://www.nhlbi.nih.gov/research/intramural/researchers/pi/young-neal/

    "Cell Biology Section
    [​IMG]
    Neal Young, M.D.
    Senior Investigator
    Cell Biology Section

    ". He is a Master of the American College of Physicians and the recipient of more than 30 awards and honors, including most recently the 2012 Samuel J. Heyman Service to America Medal (Sammie) for Science and the Environment. Dr. Young has authored 270 original scientific and medical articles in peer reviewed journals and more than 120 reviews and book chapters. He also is author or editor of 10 medical and scientific books, including a new textbook of hematology.

    Research Interests
    Dr. Young’s research is focused on bone marrow failure—human diseases that result in a failure to produce blood cells, i.e. aplastic anemia. "

    "Dr. Young also focuses on the pathogenic mechanisms of the human parvovirus B19"
     
  13. Old Bones

    Old Bones Senior Member

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    I'm looking into Dr. Joseph Snow and will report later today.
     
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  14. taniaaust1

    taniaaust1

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    Some of them don't have any research at all, eg Dr. Stephen Sinclair has nothing at all on pubmed (hence why I didn't mention any research) and most of the names, nothing at all comes up with their names and using CFS and fibromyalgia in the search terms.

    great. that you've now listed the specialities on your first post, that will help.

    I'll delete the one which seems wrong dr with same name..
     
    Last edited: Feb 23, 2016
  15. taniaaust1

    taniaaust1

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    they aren't actually all on that NIH site with search eg the very first one I tried to find wasn't Stephen Sinclair
    http://www.nhlbi.nih.gov/cgi-bin/se...cription.keywords&oe=ISO-8859-1&ie=ISO-8859-1


    the others which were.. their NIH page and info about them there came up very high when searching for their names on google
     
  16. taniaaust1

    taniaaust1

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    Dr. Bryan Smith
    • Neurology
    • , Psychiatry
    • Baltimore, MD
    "Background
    Bio
    Bryan R. Smith, MD is a practicing Neurologist in Baltimore, MD. Dr. Smith also specializes in Psychiatry "

    https://www.sharecare.com/doctor/dr-bryan-r-smith (being such a common name, it is possible it could be the wrong neurologist with that name)

    ............

    I cant find any research for him in pubmed and he isn't on the NIH website with search and nothing comes up with him and CFS.

    @Valentijn Correction. my silly brain... I was searching wrongly on PubMed putting full name in so nothing was coming up and just realise now there are B. Smith's who have done research so ignore my comment about no research as he may have some there.
     
    Last edited: Feb 23, 2016
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  17. voner

    voner Senior Member

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    @Valentijn,

    Dr. Stephen Jacobson. http://irp.nih.gov/pi/steven-jacobson

    Virologist with 30+ years at the NIH in neuroimmunology. No psychobabble found. Some experience with ME/CFS (1 publication in 1992).

    From his NIH website:

    ....In 1993, he formed the Viral Immunology Section to study the role of human viruses in the pathogenesis of chronic progressive neurologic disease. Dr. Jacobson's laboratory is studying virological, immunological, and molecular mechanisms associated with the human T lymphotropic virus type-I (HTLV-1) associated myelopathy/tropical spastic paraparesis and the association of virus in multiple sclerosis.

    He also publishes on HHV-6 and HTLV-1 in other neurological diseases....

    In 1992 he was a 2nd author on, "Clinical, epidemiologic, and virologic studies in four clusters of the chronic fatigue syndrome". The researchers tested the patients for HHV-6, HTLV-1, EBV and contains no psychobabble.

    I would feel a lot more comfortable if somebody would doublecheck my work.
     
  18. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    There's a page on NINDS under Dr Nath where you can find some of the investigators for any one looking. It's here: https://neuroscience.nih.gov/ninds/Faculty/Directory.aspx

    Just as a starting place for anyone interested in doing the digging. A few of them on cursory glance look good (thankfully)
    so at least it's not all bad.

    I'll try doing Dr Goldstein.
     
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  19. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    Dr David Goldstein

    Dr. Goldstein graduated from Yale College and received an M.D.-Ph.D. in Behavioral Sciences from Johns Hopkins. After medical internship and residency at the University of Washington, he came to the NIH as a Clinical Associate in the NHLBI, obtaining tenure as a Senior Investigator in 1984. He joined the NINDS in 1990 to head the Clinical Neurochemistry Section and founded and directs the Clinical Neurocardiology Section, an Independent Section. He has received Yale's Angier Prize for Research in Psychology, the Laufberger Medal of the Czech Academy of Sciences, 2 NIH Merit Awards, the Founders Award of the Bakken Heart-Brain Institute, the Distinguished Investigator Award of the Society for Clinical and Translational Science, and the NIH Distinguished Clinical Teacher Award. He is author of more than 500 research articles and several books, including "Adrenaline and the Inner World: An Introduction to Scientific Integrative Medicine," ”Dysautonomias: A Handbook for Patients,” "Stress, Catecholamines, and Cardiovascular Disease," and "The Autonomic Nervous System in Health and Disease.” - See more at: https://neuroscience.nih.gov/ninds/Faculty/Profile/david-goldstein.aspx#sthash.srLF9yJJ.dpuf

    Dr. Goldstein's research interests are in catecholamine systems, clinical autonomic disorders, and scientific integrative medicine. The Clinical Neurocardiology Section, which he founded and directs, carries out mainly patient-oriented research. The Section operates a renowned Clinical Neurochemistry Laboratory for assays of levels of catecholamines and their metabolites. Current research of the Section focuses on biomarkers and mechanisms of catecholamine depletion in Parkinson disease and related disorders. A major new study by the Clinical Neurocardiology Section is on biomarkers of risk of Parkinson disease (PD). We call this the PDRisk study (NIH Protocol 09-N-0010). There are two main purposes of this study. The first purpose is to determine whether people who have characteristics that may be risk factors for PD have objective evidence—“biomarkers”—that the disease process is actually going on. The evidence we are looking for is loss of nerves and nerve cells that use particular chemicals, called catecholamines. PD patients typically have a loss of nerves and nerve cells that use the catecholamines dopamine and norepinephrine as chemical messengers. The second purpose is to determine whether people who have abnormal “biomarkers” actually develop PD during several years of follow-up.

    Email: goldsteind@ninds.nih.gov

    While his focus has been on Parkinson's patients Dr Goldstein has some experience with Dysautonomia and has written a handbook on it. From what I can tell he takes things seriously as biological I can't find any hints to psychosomatic.
    Interestingly he co-authored a paper with Steven Strauss in 2002--see here: http://annals.org/article.aspx?articleid=715764
    It looks fine from my skimming but I'm not great at reading through science stuff at length.
     
    Last edited: Feb 23, 2016
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  20. Valentijn

    Valentijn Activity Level: 3

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    I skimmed the paper you cited, and his other work, and he looks good.
     
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