1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
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CFS,mitochondrial diease, autism

Discussion in 'Other Health News and Research' started by Frickly, Jan 26, 2010.

  1. FernRhizome

    FernRhizome Senior Member

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    Hi Folks:
    I am a member of the United Mitochondrial Disease Foundation and yes, they are very aware of CFS and have many members who have CFS/mito diagnoses like me! In fact there is another thread on mito disease that I just made several postings to which perhaps should be combined with this thread????? I explained the connection between mito and CFS on that thread. And I've called all my mito doctors and faxed them the Science paper on XMRV. They are all going to follow the research for sure.

    Any chance we could combine this thread with the other mitochondrial thread? ~FernRhizome (complex II mito patient as well as CFIDS patient)
  2. Dr. Yes

    Dr. Yes Shame on You

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    Hey Fern,

    How in the world do you get a "mito doctor"? I want one of them docs... and one at the Cleveland Clinic would be nice..!

    Btw I edited my last post while you were replying; I put the full PDF link up there (you may have to click the manual load option they give you). It identifies Complex I interference by a viral protein.
  3. anne

    anne Guest

    Thanks, Fern. I'm actually on Carnitor--the insurance is paying for it just fine. Wonder why?
  4. Frickly

    Frickly Senior Member

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    It would be great if we could combine these threads. I am very interested in the simularities between autism, CFS and Mitochondrial disorder. I am waiting impatiently to hear about more collaborations regarding these diverse patient groups. FernRhizome, Where can I find your other thread?
  5. FernRhizome

    FernRhizome Senior Member

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    If you contact the UMDF.org group you can ask them for a list of mitochondrial specialists. Most of them are neurologists. And there are a number of mitochondrial forums on the web and if you visit those pages you can find out which mito doctors are nearest you....or you can do what I did and just find one of the best and go to them wherever they are. It can be hard to get in as there aren't enough specialists in the field so there may be a waiting list to see the top docs. ~FernRhizome
  6. FernRhizome

    FernRhizome Senior Member

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    Frickly:
    The other mito thread is in the top subject area of the forum listings and called "General" something or other.......I didn't start it but it was started by folks without a mito diagnoses and since I have a mito diagnoses I was able to add some basic info on the mito/cfs connection. ~FernRhizome
  7. Frickly

    Frickly Senior Member

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    Thanks Sara!
  8. JPV

    JPV Senior Member

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    Excerpts from a recent blog post that I made: Wistar Institute, Dr. Elaine DeFreitas, and the Cheney-Bell-DeFreitas Work: Startling Revelations from Wistar's World Patent and Serious Reasons for Concern Now Revealed!

    WPI has gone on record saying that the retrovirus that DeFreitas discovered, CAV, is not the same as XMRV.

    Excerpt from: Whittemore Peterson Institute: Fact #8

    I'm not so sure myself.

    There is a lot more ego involved with Doctor's than most people would probably like to think. On top of that, if patents are involved with these discoveries, there's also a lot of potential money involved too. It could very well be that DeFreitas made some mistakes but was more or less on track. If that is the case, the Researchers at WPI could be exploiting these possible mistakes in order to secure a proprietary patent that invalidates the one taken out by Wistar.

    Of course, I'm not an expert on such matters and I'm merely basing my opinion on cynicism, not scientific knowledge. However I find that cynicism serves me well on this degenerate and corrupt planet that I have the misfortune of living on.

    Either way, the idea that a retrovirus has invaded our Mitochondria seems to synthesize a lot of current (and old for that matter) ideas that are coming into the forefront as of late. I've been reading some of Dr. MyHill's writings regarding Mitochondia dysfunction in CFS lately and find them very compelling. As far as I'm concerned, a lot of the pieces of the puzzle finally seem to be slowly falling into place. Hopefully some substantive progress will be made soon. In the meantime, I'm going to start experimenting with Dr. MyHill's protocol.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    What Kurt said....

    We have malfunctioning mitochondria, but that is just one part of the picture of CFS. Given the infection of XMRV is in the DNA, I suspect malfunctioning mitochondria is a result, not a cause. Although, maybe CFS is because someone has both XMRV and a malfunctioning mitochondria, neither of which causes illness on its own.

    And by the way, maybe the chemicals is what the Sakudo test was measuring.

    You guys remember this story? http://mlb.mlb.com/news/article.jsp...d=2421189&vkey=spt2008news&fext=.jsp&c_id=mlb

    Tina
  10. richvank

    richvank Senior Member

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    Hi, all.

    For what it's worth, Sarah Myhill and I drafted a review paper on all the published evidence we could find that point to mito dysfunction in CFS, and we found quite a lot. We submitted it to two journals in sequence and were turned down by both of them. We may try again. As has been mentioned, Dr. Myhill and coauthors have published a study correlating measured mito dysfunction with degree of disability in CFS, and they found a good correlation.

    As has been mentioned, it looks more like mito dysfunction than genetic mito disease in CFS, but there aren't enough data to say that there are not also some genetic mito diseases in the poeple within the CFS population.

    As has also been mentioned, glutathione depletion in the mitochondria has been proposed (by me) as the cause of the dysfunction in CFS. Marty Pall has invoked peroxynitrite as the cause (which is elevated when glutathione is depleted, though Marty does not support glutathione depletion as being the cause of peroxynitrite elevation). Paul Cheney has suggested that lowered activity of the antioxidant enzymes is the cause of the mito dysfunction in CFS, perhaps as a result of viral activity.

    For what it's worth, I wrote a letter to the editor of the Townsend Letter, which was published a few years ago, suggesting that CFS and autism are the same disorder, the differences being due to the different ages of onset. Dr. Michael Goldstein and Prof. Malcolm Hooper are two people who had publicly suggested a connection between these two disorders some years before I pointed out glutathione depletion tied to the partial methylation cycle block being found in both of them.

    Best regards,

    Rich
  11. Frickly

    Frickly Senior Member

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    What if XMRV is the cause of mitochondrial disease and CFS in children that were born with the infection? What if adult onset of mito or CFS was caused by a later infection of XMRV or these people had it when they were born but something in the enviornment triggered an activation later on in life? The same could be said for autism as there are some that are born with it and others that experience a regression.
  12. JPV

    JPV Senior Member

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    That's basically my opinion. That if it is indeed a virus, perhaps it lies dormant until some environmental event or stressor triggers it. My Mother has the same condition and developed it about 5-6 years before I did. It's interesting to note that I keep reading that you inherit your Mitochondria from your Mother. Perhaps it's a virus that is in a large segment of the population, but only becomes becomes active in those with the right combination of genetically weak Mitochondria and exposure to environmental toxins/stressors. Both my Mother and I have worked around toxic chemicals for much of our adult lives.
  13. Frickly

    Frickly Senior Member

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    Oh....no.....once again it's all the mothers fault... :) Seriously though, I have read the same thing. I have CFS and my son has ADHD, aspergers, OCD and tourettes. I think my 4 year old daughter may have OCD but hard to know for sure this early. I just know we are close to finding the answers.
  14. MargeM

    MargeM MargeM

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    I've read that most mitochondrial diseases are caused by defective nuclear genes, and can be inherited from either parent or a defective gene from both.
  15. spindrift

    spindrift Plays With Voodoo Dollies

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    It is possible to get free diagnostic for mitochondrial disease (MITO) through MDA (Jerry's kids) since it is one of the diseases they cover.
    I called MDA and told them I suspect MITO since almost every adult in my family from my maternal grandma down has fibromyalgia.
    I was able to see a MDA doc (who unfortunately specialized in ALS not MITO) for free. After talking to me for an hour and looking at my
    other family members health records which I brought with me, he said I have FM because I would have gotten MITO as a child. This is
    not completely correct as there is adult onset MITO.

    I do encourage anyone with CFS or FM that is interested to contact the MDA for free MITO diagnostic. If some get tested and some come out
    positive for MITO, it might get doctors to look more into this direction.

    Here is a link to MDA that also shows possible inheritance patterns ( maternal, Mendelson and random mutation):

    http://www.mda.org/Publications/mitochondrial_myopathies.html

    Also Cheney's take on CFS/ mitochondrial disease way back in 2000:

    http://www.prohealth.com/library/showarticle.cfm?libid=7741

    As far as my family's inheritance pattern goes it could just as well be vertical XMRV infection. Maybe it is both.
    I am SOOOOOOOOOOOOOO looking forward to more research!!!
  16. spindrift

    spindrift Plays With Voodoo Dollies

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    @ FernRhizome,

    Thanks for the info on the Mootha test. That is really something to look forward to!

    @ richvank,

    Thanks for your post. Dr. Myhill rocks. I have been improving on her protocol.
  17. free_spirit

    free_spirit

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    My father had Motor Neurone Disease (ALS) and his brother, my uncle, has retinitus pigmentosa (A mito disorder) as did their father. I believe my ME is the result of repeated pesticide poisening when my employer fumigated the work place for fleas. The building had previously stood empty for 12 years and once the workforce moved in, the heating system turned on etc, we were over run by fleas. Previously a family of wild cats had lived in the basement (and we all know what they feed on!). I had the Mitochondrial function profile test done by Dr M which showed I produce little energy which is rapidly depleted on exertion. I am low on CoQ10, Zinc and Copper and have a significant increase in cell degradation (almost on a par with someone undergoing cancer chemo). My Dr has ignored all this info. I have since found out that there are at least 6 of my ex work coleagues that now have ME. I don't know if this is significant but my son has Bipolar disorder and possible Aspergers.
  18. Gerwyn

    Gerwyn Guest

    viruses and acquired mitochondrial dysfunction

    The myriad of apparently unconnected symptoms of ME/cfs can all be accounted for by one problem -mitochondrial dysfunction or more accurately aquired mitochondrial dysfunctiom Severe-HPA axis,immune,cognitive,endocrine and neurological problems all occur as a result of problems in the body's powercells---you even need energy to maintain sleep! Even extreme symptoms like seisures,paralysis and absence of propioreception can be explained by this central abnormality.There is some very persuasive evidence published in the UK in support of this.There are numerous viruses which are known to cause mitochondrial dysfunction such as epstein Barr and the viruses that cause mumps measles and so on.They do so by integrating into the mitochondrial DNA ,which is essentially a plasmid, and cause errors in the reading frame ,and thus mitochondrial protein, causing dysfunctions.XMRV could well be another virus capable of injuring mitochondria perhaps even the main one!mitochondrial dysfunction can also be caused by other environmental factors such as organophosphates etc----Gulf war syndrome increasingly appears to be Mito poisoning-----Just as an aside many poisons act on the Mitochondria and many people complain of feeling poisoned I know I did----Apologies for the non scientific anecdote
  19. Gerwyn

    Gerwyn Guest

    mitochondrial disease transient character

    We do fit into the category of aquired mitochondrial diseases mutations in mitochondrial dna may be transient and not permanent-Black et al chest aug 2001The number of people with me/cfs who recover premorbid function is actually very small.Mitochondrial failure would account for all the symptoms regarded as core in the Canadian criterea,neurological,autonomic cardiovasculat,immune cognitive etc I dont know if mitochondrial failure is complex but its consequences are totally devastating . I dont know of any other hypothesis that fits as the cause of otherwise disparate symptoms
  20. Gerwyn

    Gerwyn Guest

    letter To Barack Obama

    This letter is rather brief but the list of signaturees is very long containing many eminent names.This letter is fascinating because it lists many diseases related to mitochondrial dysfunction which are debilitating but treatable either conservatively and or pharmaceutical intervention therefore THEY NOT INEVITABLY PROGRESSIVE.There are many researchers interested in this area I wonder if they are worth contacting?Are any of them known to the WPI.
    January 22, 2009



    President Barack Obama
    The White House
    1600 Pennsylvania Avenue, NW
    Washington, DC 20500



    Dear President Obama:



    We represent a broad spectrum of physicians, scientists and researchers and are writing to express our strong support for your commitment to expand scientific research. As you consider this increased investment in science, we want to highlight a very important and potentially far-reaching area of inquiry. Specifically, greater understanding of the mitochondria could provide insights into treatments for a wide range of diseases and conditions that affect millions of Americans.



    Mitochondria are often called the “powerhouses of the cell.” They are specialized compartments within almost every cell and are responsible for producing the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce the energy required for all bodily functions. If the mitochondria fail to produce sufficient energy, the cell will not function properly and organ systems will fail.



    Research has revealed that mitochondrial dysfunction is at the core of many common illnesses and chronic conditions such as Alzheimer’s disease, Parkinson’s disease, diabetes, heart disease, obesity, osteoporosis, cancer and even the aging process. Autoimmune diseases such as multiple sclerosis, lupus and rheumatoid arthritis also may have a mitochondrial basis. There also is new evidence that mitochondrial dysfunction plays a role in the cause of some children’s autism.



    There also are “primary” mitochondrial diseases that usually result from genetic defects that reduce the ability of the mitochondria to produce energy. Mitochondrial disease was recognized relatively recently with the first cases diagnosed in adults in the 1960s and in children in the 1980s. Every 30 minutes a child is born who will develop a mitochondrial disease by age ten. Research published six months ago showed that more than 1 in 200 people have mitochondrial DNA mutations that could lead to mitochondrial disease.



    Acknowledging the potentially far-reaching implications that would result from a deeper understanding of the mitochondria, The National Institutes of Health recently committed to establish a mitochondria research initiative that would involve all NIH institutes. This initiative will play a significant role in advancing science and medicine. In the 2008 appropriations legislation, the United States Congress expressed its support for intensified mitochondrial research within NIH.



    While some steps are being taken, much more could be done to increase our understanding of this critical area of human health. Because mitochondria are so important to the health of cells, a full understanding of their function and dysfunction will have a significant impact on the health of our citizens and will lead to prevention and cures for medical problems that currently affect millions of Americans. We respectfully urge your Administration to include research into mitochondrial medicine among your top medical and research priorities.



    Respectfully,



    Salvatore DiMauro, MD

    Lucy G. Moses Professor of Neurology Columbia University New York, NY

    Bruce H. Cohen, MD

    Chief of Pediatric Neurology The Cleveland Clinic Cleveland, OH

    Robert K. Naviaux, MD, PhD

    UCSD Mitochondrial and Metabolic Disease Center University of California – San Diego San Diego, CA

    Peter W. Stacpoole, PhD, MD

    Director, General Clinical Research Center Director, Clinical and Translational Science Institute Associate Dean, Clinical Research and Training University of Florida Gainesville, FL

    Sidney M. Gospe, Jr., MD, PhD

    Herman and Faye Sarkowsky Endowed Chair Head, Division of Pediatric Neurology Professor of Neurology and Pediatrics University of Washington Seattle, WA

    Douglas C. Wallace, PhD

    Director, Center for Molecular & Mitochondrial Medicine and

    Genetics

    Biological Chemistry School of Medicine

    University of California - Irvine

    Irvine, CA

    Charles Hoppel, MD

    Co-Director

    Center for Inherited Disorders of Energy Metabolism Case Western Reserve University School of Medicine Cleveland, OH

    Jerry Vockley, MD, PhD

    Professor of Pediatrics

    School of Medicine

    University of Pittsburgh

    Professor of Human Genetics

    Graduate School of Public Health

    Chief of Medical Genetics

    Children's Hospital of Pittsburgh of UPMC

    Pittsburgh, PA

    John M. Shoffner, MD

    Neurology, Biochemical Genetics, Molecular Genetics Medical Neurogenetics, LLC

    Adjunct Associate Professor, Georgia State University Atlanta, GA

    Vamsi Mootha, MD

    Associate Professor, Department of Systems Biology Harvard Medical School & MGH/Broad Institute Cambridge, MA

    David Chan, MD, PhD

    Associate Professor of Biology California Institute of Technology Pasadena, CA

    Michael A. Frohman, MD, PhD

    Professor & Ch airman

    Department of Pharmacological Sciences

    Director

    Medical Scientist Training Program (MD/PhD, MSTP)

    Center for Developmental Genetics

    Stony Brook University

    Stony Brook, NY

    Keshav Singh, PhD

    Professor of Oncology Department of Cancer Genetics Roswell Park Cancer Institute Buffalo, NY

    Douglas S. Kerr, MD, PhD

    Director

    Center for Inherited Disorders of Energy Metabolism

    Professor, Department of Pediatrics

    Case Western Reserve University School of Medicine

    Cleveland, OH

    Michio Hirano, PhD

    Associate Professor of Neurology Neurological Institute Columbia University New York, NY

    Russell P. Saneto, DO, PhD

    Associate Professor of Neurology and Pediatrics University of Washington Seattle, WA

    Susan P. LeDoux, PhD

    Assistant Dean for Curriculum

    Professor and Vice-Chair

    Department of Cell Biology and Neuroscience

    University of South Alabama

    Mobile, AL

    Amy C. Goldstein, MD

    Child Neurologist, Division of Child Neurology Children's Hospital of Pittsburgh of UPMC Clinical Assistant Professor of Pediatrics & Neurology University of Pittsburgh School of Medicine Pittsburgh, PA

    Kendall B. Wallace, PhD

    Diplomate, American Board of Toxicology Fellow, Academy of Toxicological Sciences Editor, Toxicology

    Professor, Biochemistry & Molecular Biology University of Minnesota Medical School Duluth, MN

    Gerald S. Shadel, PhD

    Departments of Pathology & Genetics Yale University School of Medicine New Haven, CT

    Sion Williams, PhD

    University of Miami Department of Neurology Miami, FL

    Lee-Jun Wong, PhD

    Professor of Molecular and Human Genetics Baylor College of Medicine Houston, TX

    Dennis R. Winge, PhD

    Department of Internal Medicine University of Utah Health Sciences Center Salt Lake City, UT

    Tina Wenz, PhD

    University of Miami Miller School of Medicine Department of Neurology Miami, FL

    Mindong Ren, PhD

    Assistant Professor of Cell Biology New York University School of Medicine New York, NY

    Mark Tarnopolsky, MD, PhD, FRCP

    Associate Professor

    Departments of Pediatrics and Medicine McMaster University Medical Center Hamilton, Ontario Canada

    Massimo Zeviani, MD, PhD

    Division of Molecular Neurogenetics National Neurological Institute "C.Besta" Milan, Italy

    Brian Robinson, PhD

    Program Head – Metabolism

    Research Institute Hospital for Sick Children

    Toronto, Ontario Canada

    Anu Suomalainen, MD, PhD

    Sigrid Juselius Professor of Clinical Molecular Medicine Finnish Centre of Excellence for Research on Mitochondrial Disease and Aging (FinMIT) University of Helsinki Helsinki, Finland

    Tanja Taivassalo, PhD

    Department of Kinesiology & Physical Education McGill University Montreal, Quebec, Canada

    Sandra R. Bacman, PhD

    Departmemnt. of Neurology and Cell Biology & Anatomy Miller School of Medicine University of Miami

    Patrick F. Chinnery, MBBS, PhD, FRCPath, FRCP

    Professor of Neurogenetics The Medical School Framlington Place Newcastle upon Tyne, UK

    Annette Feigenbaum, MD, ChB, FRCP

    Associate Professor, Department of Paediatrics University of Toronto Medical Director, PKU Program The Hospital for Sick Children Toronto, Ontario Canada

    Eric A. Shoubridge, PhD, FRSC

    Professor, Departments of Neurology and Neurosurgery and Human Genetics Montreal Neurological Institute McGill University Montreal, Quebec Canada

    Howard Zucker, MD, JD

    Former Assistant Director General

    World Health Organization

    Former Deputy Assistant Secretary of Health

    U.S. Department of Health and Human Services

    Institute of Politics Fellow, Spring 2009

    Harvard University Kennedy School of Government

    Cambridge, MA

    Rajiv R. Varma, MD

    Clinical Director

    Division of Child Neurology

    Children's Hospital of Pittsburgh of UPMC

    Pittsburgh, PA

    Giovanni Manfredi, MD, PhD

    Professor of Neurology and Neuroscience Weill Medical College Cornell University New York, NY

    Richard H. Haas, MD

    UCSD Mitochondrial and Metabolic Disease Center University of California – San Diego San Diego, CA

    Lawrence I. Grossman, PhD

    Professor of Molecular Medicine and Genetics Henry L. Brasza Director Center for Molecular Medicine and Genetics Wayne State University School of Medicine Detroit, MI

    Carlos T. Moraes, PhD

    Department of Neurology and Cell Biology & Anatomy Miller School of Medicine University of Miami Miami, FL

    Eric Schon, PhD

    Professor of Genetics and Development College of Physicians and Surgeons Columbia University New York, NY

    Devin Oglesbee, PhD

    Assistant Professor

    Laboratory Medicine and Pathology

    and Medical Genetics

    Co-Director, Biochemical Genetics Laboratory

    Mayo Clinic

    Rochester, MN

    Grazia Isaya, MD, PhD

    Consultant and Professor

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    Mayo Clinic College of Medicine

    Arun Srivastava, PhD

    George H. Kitzman Professor of Genetics Chief, Division of Cellular and Molecular Therapy Departments of Pediatrics, Molecular Genetics & Microbiology, Powell Gene Therapy Center Assistant Director, General Clinical Research Center Cancer and Genetics Research Complex University of Florida Gainesville, FL

    Gregory M. Enns, MB, ChB

    Director, Biochemical Genetics Program Division of Medical Genetics Stanford University Stanford, CA

    William Craigen, MD, PhD

    Molecular and Human Genetics Baylor College of Medicine Houston, TX

    Juan M. Pascual, MD, PhD

    Assistant Professor

    Departments of Neurology, Physiology Pediatrics Division of Pediatric Neurology University of Texas Southwestern Medical Center Dallas, TX

    Antoni Barrientos, PhD

    Associate Professor

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    Miller School of Medicine

    University of Miami

    Miami, FL

    Marni J. Falk, MD

    Assistant Professor of Human Genetics University of Pennsylvania

    Director, Mitochondrial-Genetics Diagnostic Clinic The Children's Hospital of Philadelphia Philadelphia, PA

    Mikhail Alexeyev, PhD

    Assistant Professor University of South Alabama Mobile, AL

    Francisca Diaz, PhD

    Research Assistant Professor Department of Neurology Miller School of Medicine University of Miami Miami, FL

    Konstantin Khrapko, PhD

    Associate Professor of Medicine Beth Israel Deaconess Medical Center Harvard Medical School Boston, MA

    Stephen P. Hersh, MD, DLFAPA

    Director, The Medical Illness Counseling Center

    Clinical Professor of Psychiatry, Behavioral Sciences and

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    The George Washington University

    Washington, DC

    Mary Kay Koenig, MD

    Director - Neurometabolic & Mitochondrial Clinic University of Texas Houston Houston, TX

    Carla Koehler, PhD

    Associate Professor

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    Jeff MacKeigan, PhD

    Scientific Investigator Head, Laboratory of Systems Biology Van Andel Research Institute Grand Rapids, MI

    Phil G. Morgan, MD

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    University of Washington and Children’s Research Institute

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    Jodi Nunnari, PhD

    Professor and Chair

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    University of California - Davis

    Davis, CA

    Thomas W. O'Brien, PhD

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    University of Florida

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