The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

MGH or Brigham & Women's Experience?

Discussion in 'ME/CFS Doctors' started by David_101, Sep 14, 2018.

  1. David_101

    David_101

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    Having been through a really bad experience at Tufts, I'm officially going to switch my provider care over to MGH or Brigham's in Boston.

    I suspect that I have autonomic dysfunction and autoimmune issues (both seem to be related). I have higher ANA (an autoimmune test that showed 1:160) which my doctors are not investigating.

    Does anybody have any experience with either hospitals?

    Specifically for neurologists and rhumotologists.
     
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  2. Learner1

    Learner1 Forum Support Assistant

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  3. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I'm interested to see what people say, too! Would you consider someone at Beth Israel as well? Or do you need to stay within the Partners system? I think that your experience will depend more on who the doctor is rather than the hospital.

    The Mass ME/CFS and FM society does provide physician referrals based on patient feedback--have you contacted them?

    I see Dr. Systrom (a pulmonologist) at the Brigham, and I think that he is a good doctor. But I do not currently have a rheumatologist following my condition in addition to him, and I wish I did. I had previously seen Dr. Bermas, also at the Brigham, but she is (thankfully) no longer there--she didn't have much sympathy, discounted my abnormal test results, and pushed me to exercise far beyond my limits. She had been the director of the Arthritis Center (where they see all rheumatological patients), which makes me wonder if other clinicians there had similar views.
     
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  4. minimus

    minimus

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    I am scheduled to see Systrom in mid-October for an initial consult, will be travelling from NYC. Am on the verge of disability and a more severe case of ME, after 20 years between moderate and mild.

    Is he helpful? I am interested in the invasive CPET he runs, but am curious if he runs that test on everyone with exercise intolerance. Also, is he helpful or more focused on whether the patient is a good candidate for mestinon?
     
  5. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I don't know if he runs it on everyone. However, I imagine he suggests it to most people with our profile (as opposed to people who present with obvious heart and lung issues unrelated to CFS). Right before you see him, they'll do a quick breathing test and an exercise test (just stepping up and down off a stool for a minute or two) so he has some data on which to base the decision to suggest an iCPET.

    Both, to be honest. He's a pulmonologist who has found a way to treat some of the symptoms of CFS that seems to work for a lot of his patients, so that is his focus. Mestinon seems to be his go-to drug of choice. If the Mestinon doesn't work (which happened with me--it actually made me feel worse), there are a few other medications and treatments he can recommend (which have made me feel better). However, he's not a rheumatologist and so his interest and expertise is not in figuring out the underlying autoimmune issues. He just treats the symptoms, and he does so using the drug he has found tends to work for his patients.

    All in all, I think it is helpful to see him. He's very kind, and the tests he run could give you some interesting data about how your body is functioning. And the drugs he prescribes may be helpful. Although the results haven't been dramatic for me--I'm not running marathons or working full time--my energy level and level of functioning has improved a few notches, which has made a huge difference in my quality of life. However, keep in mind that he's not a rheumatologist who would manage your case or try to figure out what's going on with your immune system.


    P.S. I just have to ask, @minimus --have you named yourself after the mouse??
    upload_2018-9-15_9-10-30.jpeg
     
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  6. David_101

    David_101

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    @Learner1 I appreciate the links. Is the cell trend only ruling out POTS or other types of autonomic dysfunctions. At this point it's hard to say what I have. I have irregular racing heart/higher blood pressure which is like the opposite of classic POTS. Though I do get lightheaded when I change positions, I don't faint.

    @RebeccaRe I would consider Beth Israel as well if there are good doctors who understand and don't label this as something in your head. Thanks for the Mass ME/CFS link. It's a shame to hear about bad the rhuemotologist you had at Brigham. I hope that doesn't include the whole dept.

    @minimus I'm sorry to hear about your ME situation. 20 years is tough. I really hope Dr. Systrom can provide meaningful help or is at least sympathetic. This whole ordeal has changed my perspective on doctors.
     
    Last edited: Sep 15, 2018
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  7. Learner1

    Learner1 Forum Support Assistant

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    @David_1 I have some of those antibodies, with a racing pulse and high BP.
     
  8. minimus

    minimus

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    Thanks @RebeccaRe for your really helpful, informative reply and @David_101 for your sympathy.

    Two decades of this dreadful illness has been rough physically and emotionallly. But on the bright side, I can't remember what it's like to be healthy anymore, whereas in the first 5 or so years of illness, I really yearned and mourned for my old, healthy self.

    @RebeccaRe, I chose the username "minimus" because my boss used to jokingly refer to me as "Maximus" because of an optimization program I developed before I got sick. Somehow "minimus" seemed more fitting after I got sick.

    Your description of Systrom makes me a lot more hopeful about seeing him. I have seen quite a few ME/CFS specialists - Cheney, Levine, one of Klimas' nurse pracitioners. They are good at diagnosis, validation, and chronicling the ups/downs of the disease, but none have given me any faith that ME/CFS can be effectively treated. At this point, I would settle for just a little bit of improvement -- to feel like an 80 year old instead of a 90 year old, I guess. Sounds like Systrom might be able to do that, fingers crossed.
     
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  9. minimus

    minimus

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    Just as an update, I had my initial consultation with David Systrom and came away pretty impressed by the experience and the breadth of his diagnostic approach.

    Starting with a long preamble: my experience having had CFS since 1998 is that mainstream medicine treats the disease with borderline scorn, or at best ignores it. I have been to three major hospitals in Manhattan (Weill-Cornell, Columbia-Pres, NYU Langone) and to any number of specialists, and when I utter the term “CFS”, it is with a sense of embarrassment and trepidation, since at best doctors ignore the diagnosis and at worst they seem to write me off as someone beyond help.

    Mainstream medicine is willing to focus on the comorbid conditions that sometimes develop as sequels to long-term ME/CFS as if these comorbid conditions are deadly serious, all the while refusing to acknowledge ME/CFS itself, which is far more disabling than the comorbid conditions.

    People with ME/CFS are then exiled - either avoiding doctors entirely if they are unable to travel or pay for medical care or sending them to far-flung “maverick” ME/CFS specialists (Levine, Klimas, Cheney, et al) who have to operate independently because they too are ignored by mainstream medicine. I have had other doctors say that Paul Cheney sounds like a quack and that Sue Levine’s patients are “crazies”.

    So it was striking to go to a doctor at one of the best hospitals in the US, where ME/CFS was the primary focus of the consultation. Systrom and his staff were focused entirely on the symptoms of ME/CFS. All of his clinical staff was professional, direct and sincere. That strikes me as a major positive step forward, and it reflects the work of the OMF and the SMCI in raising awareness and in providing research funding.

    As far as my visit went, Systrom seemed to have reviewed all of my medical records - about 45 pages of test results and specialists’ letters sent in advance by me and Susan Levine, who referred me to him. (I have a recent diagnosis of bronchiectasis, so he was interested in what the head of pulmonology at Weill-Cornell had to say after that pulmonologist had reviewed my most recent chest CT scan.)

    Systrom strongly recommended I have the iCPET and unfortunately there is a three month wait for that. But he also seems focused on testing for autoimmunity as well as for other possible diseases. Maybe that was because I saw him with sharply worsening symptoms in recent months, raising his suspicion that some other disease is emerging.

    He ran a fairly comprehensive battery of blood tests in my case, some standard, some more esoteric, including:
    CBC
    Chem screen
    ESR
    CRP
    Rheumatoid factor
    Mayo paraneoplastic antibodies panel
    Lupus anticoagulant panel
    ACE
    SPEP panel with immunofixation accompanied by pathologist’s report
    SS-A/SS-B
    Complement C3 & C4, total complement
    Tryptase
    PT-INR
    PTT

    He also looked at my history of allergy and sinusitis and gave me the test kit to do the 24-hour N-methylhistamine test for MCAS/MCAD (but he warned that specimen handling by labs is often poor, resulting in false negatives.)

    He also now does a calf skin biopsy to send to Anne Oaklander to look for autoimmunity at initial consultations.

    Time will tell if the treatment following the iCPET can bring me back from the brink of moderate/severe ME/CFS, but I am somewhat hopeful. I also left with a sense that some of the scientific research into ME/CFS has found its way into mainstream medicine, and may have started to displace the idea, reinforced by the garbage PACE studies, that ME/CFS is psychosomatic in origin.
     
  10. Learner1

    Learner1 Forum Support Assistant

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    Th sounds promising!

    Prostaglandin D2 and chromogranin A are better tests for MCAS. I have a similar history, yet histamine has bern low, while these other tests, which Dr. Kaufman in CA ordered, are high.
     
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  11. Dakota15

    Dakota15 Senior Member

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    @minimus thank you for sharing your Dr. Systrom experience.

    Is the 3 month wait for the iCPET considered normal? I'm a patient living in the Midwest who has considered going to see Dr. Systrom but I guess I just figured any testing (including iCPET) would be at the initial appointment....
     
  12. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I also had a wait of a few months between the initial appointment and the iCPET. You need to have an initial appointment first to determine whether the iCPET will be a good option for you (they did brief non-invasive exercise test right before the initial appointment--just stepping on and off of a stool for a few minutes).

    And the iCPET is a bit of a big deal in terms of a time commitment; I think I was at the hospital for about four hours (there's only about 10 minutes or so of actual exercise testing--the rest is putting in/taking out catheters, recovery, etc.). So it's not something that can easily be done right before the appointment.
     
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  13. kikala

    kikala

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    hi all,

    I saw Dr. Systrom in September, and had a very similar experience as @minimus (thanks for writing it all up, minimus, so I don't have to ;-)).

    I have an appointment for the iCPET in early December and am trying to decide whether or not to go through with it. I'm very concerned about crashing for a long time as a result of the exercise test -- I have been in a bad crash for about 5 weeks and the thought of exacerbating that - and not knowing how long it might last -- is terrifying.

    I spoke today to Jeff, a physician assistant at Systrom's office, to get the results of the initial testing I had done in Sept (same testing as minimus had). He said the testing shows I don't have mast cell activation. He said my ESR and CRP were slightly elevated, which he said is common in people with inflammation. He also said I was positive for rheumatoid factor -- a normal level is 0 - 13, and mine was 53 -- and referred me to a rheumatologist who works with them. Has anyone else had that? I don't have signs of rheumatoid arthritis, but he said it could simply be a sign of other autoimmune issues.

    I like that a mainstream practice is believing people with ME/CFS and investigating potential treatments like mestonin and IVIG, but I'm not particularly hopeful that these treatments will address my unrelenting weakness and fatigue.
     
  14. Learner1

    Learner1 Forum Support Assistant

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    Do you supplement with anything that might help you climb out? Antioxidants, perhaps, like liposomal glutathione, B vitamins, and amino acids, particularly BCAAs (leucine, isoleucine, and valine)? Or maybe mitochondrial support, like ubiquinol, carnitine, or NAD+?
    My unrelenting weakness, fatigue, and quality of life have improved quite a lot with IVIG, Mestinon, propranolol, Valcyte, and nutrient support.

    Given that you've shown some autoimmunity, it might be worth investigating any antibodies you have, which would make justifying treatment easier. Attached is a list of tests you might have done, gathered by other PR members. I was fired by a rheumatologist who couldn't find my very real autoimmune problems, so don't be discouraged. You might also try to find a functional medicine doctor, though there aren't many in Boston.
     

    Attached Files:

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  15. Dakota15

    Dakota15 Senior Member

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    @Learner1 - If you don't mind me asking, and if I recall correctly you are a patient of Dr. Kaufman's (I am a patient of Dr. Chheda's), but Dr. Chheda had mentioned to me that she thinks IVIG 'might be' beneficial for me but that we wouldn't be able to have insurance approve it for me....can I ask what tests / results you used for insurance approval in regards to IVIG?

    If I don't show autoimmunity in my test results (I did mention the vaccine challenge if you are familiar with IVIG approval purposes but she expressed skepticism that it would still get approved), am I just S.O.L. then most likely with ever trying to get approved? Feel free to DM if you prefer that route....
     
    Last edited: Nov 15, 2018 at 9:42 AM
  16. kikala

    kikala

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    Thanks Lerner1.

    I don't currently take any supplements - I have been sick a LONG time -- 28 years and counting -- and after about 10 years of trying everything under the sun and not noticing any improvement and having some problems from things I've tried, I settled on waiting until there's good evidence for something before wading back into the waters. (As an aside, I've noticed that people tend to lean either toward trying everything possible, because the situation is so dire, or not risking anything new that could potentially make us worse, because the situation is so dire. We really are between a rock and a hard place.

    So this is something new to me -- seeking out possible new treatments. I'm so glad to hear you've improved by the things you've tried.
     
  17. Learner1

    Learner1 Forum Support Assistant

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    The recent research has pointed to the likelihood of deficiencies.

    The Fluge and Mella PDH blockade study showed that females in particular were low in 2 categories of amino acids, which happened to match my test results.

    Many studies have identified oxidative stress as an issue, again, something identified on my labs.

    And both Hanson's and Naviaux's metabolomics papers showed numerous metabolic abnormalities - see attached and below. Those that matched for me were depletion of lipids used in cell and mitochondrial membranes, riboflavin and B12.

    https://www.healthrising.org/forums...s-study-validates-naviauxs-core-finding.4846/

    And then there's today's HealthRising which discusses what happens in ME/CFS patients with exercise:

    https://www.healthrising.org/blog/2...lems-and-autophagy-dr-klimass-exercise-study/

    Another study agrees:

    https://www.ncbi.nlm.nih.gov/m/pubmed/28059425/

    Given that your situation has gone on for a long time, it would be difficult to guess what your needs might be, so guessing and trying supplements is not likely to be a fruitful strategy.

    The good news is that we live in an era where personalized medicine is gaining traction and there are many tests that have evolve to support investigating what might be off.

    A key test, which Medicare paid for for my mom, is a Genova Diagnostics NutrEval FMV with Amino acids and vitamin D test, which is a comprehensive nutrient test. A sample test can be found in their website as can a list of doctors who can run it.

    There are 2 tests for mitochondrial function - the Acumen test in the UK and the MitoSwab test from New Jersey. Both could help identify if you have mitochondrial issues and where they are, and the info would dovetail with what the NutrEval does to personalize a program for you.

    Exercise demands resources from the body to make energy. Doesn't it make sense it would deplete things, that, if not replenished, would leave one feeling worse? The trick is to feed the body what its asking for, as it needs it, to be able to function. It is a balancing act, but it can be done.

    Best wishes...
     

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  18. JT1024

    JT1024 Senior Member

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    Not sure if this was posted before but Dr. Systrom is now working with the OMF group as are several others.

    October 10, 2018

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Center at Harvard, funded by OMF

    We are proud to announce the establishment of another ME/CFS Collaborative Research Center. This research initiative, which includes participants from Harvard Medical School (HMS) affiliated hospitals is supported by the Open Medicine Foundation (OMF). The participating HMS Institutions include the Massachusetts General Hospital (MGH), Brigham and Women’s Hospital (BWH), & Beth Israel-Deaconess Medical Center (BIDMC). The new initiative begins with a dozen faculty from the three Harvard Institutions together with critical collaborators from the University of Birmingham, England and University of Nottingham, England, who comprise the MRC-Arthritis Research UK Centre for Musculoskeletal Aging Research, as well as long term highly valued collaborators in the fields of proteomics and metabolism from the Pacific Northwest National Laboratory (PNNL). (Full faculty listing below.)

    This new Collaborative Center seeks to conduct basic science mechanistic studies with very high priority. This research focus will discover and understand the multi-omic signature of muscle biopsies of ME/CFS patients during their recovery from mild to moderate muscular stress, by comparison to healthy individuals’ signatures at baseline, during recovery from muscular stress, and during immobilization. Our hypothesis is that the inflammation-related recovery mechanisms in ME/CFS patients are dysregulated, and that this delays recovery from post-muscular stress. In addition to the direct tissue studies, both structural and functional neuroimaging will be conducted at the very advanced MGH/HMS imaging center, the Martinos Center for Biomedical Imaging (www.nmr.mgh.harvard.edu). This will allow testing of hypotheses related to neuro-immune interactions, including exaggerated vagus nerve signaling, microglial activation, and disrupted autonomic and metabolic functioning in the central nervous system.

    These clinical research studies are designed to characterize the multi-omic signature (genomic, proteomic, metabolomic, as well as ultrastructural morphology) of ME/CFS patients as compared to those in healthy individuals who are recovering from muscular stress. The proteomic, phosphoproteomic, and metabolomic studies will be conducted at the PNNL. These comparisons will be correlated with the neuroimaging results with the intent to identify biomarkers and suggest drug targets for use in the development of therapeutics for ME/CFS.

    This new Collaborative Center also will seek support to develop an infrastructure for rigorous clinical investigations to identify and fast track promising potential treatments through clinical trials. This clinical research center working with the OMF-supported Stanford ME/CFS Collaborative Center also represents a unique opportunity to establish standards and infrastructure for rigorous clinical investigations and trials in ME/CFS. The Center will be designed to evaluate the potential for new ME/CFS therapeutics and to conduct well designed, CRO-supervised, pivotal clinical trials for those novel promising compounds.

    Participating Faculty:

    The faculty participating in this new collaborative initiative are listed below along with brief introductions to follow.

    Stanford University
    Ron Davis, PhD

    University of Birmingham (U Birmingham)
    Janet Lord, PhD

    University of Nottingham (U Nottingham)
    Philip Atherton, PhD
    Paul Greenhaff, PhD

    Massachusetts General Hospital (MGH)
    Ronald Tompkins, MD, ScD
    Wenzhong Xiao, PhD
    Donna Felsenstein, MD
    Jonathan Friedstat, MD
    Daniel Irimia, MD, PhD
    Amel Karaa, MD
    Michael VanElzakker, PhD
    H. Shaw Warren, MD
    Yongming Yu, MD, PhD
    Andrew Alexander, MBA Pacific

    Brigham & Women’s Hospital (BWH)
    David Systrom, MD
    Anthony Komaroff, MD

    Northwest National Laboratory (PNNL)
    Richard Smith, PhD
    Jon Jacob, PhD
    Wei-jun Qian, PhD

    BI Deaconess Medical Center (BIDMC)
    Janet Mullington, PhD

    Ronald Tompkins, MD, ScD, Sumner M. Redstone Professor of Surgery at HMS and MGH, is a surgeon and scientist who also trained at the Massachusetts Institute of Technology (MIT) receiving a ScD in Chemical Engineering. Dr. Tompkins has been the Chief of the MGH Burn and Trauma Services as well as the Chief of Staff, Shriners Hospitals for Children – Boston for more than 20 years. Dr. Tompkins has been active in medical research supported by more than $200M from the NIGMS in the fields of inflammation and metabolism with emphasis on genomics, proteomics, and small molecule metabolomics. Dr. Tompkins has collaborated for more than two decades with Dr. Ron Davis of the Stanford Genome Technology Center (Department of Biochemistry). Dr. Tompkins has actively participated on the Scientific Advisory Board of OMF since its establishment.

    Wenzhong Xiao, PhD, Associate Professor of Surgery (Bioinformatics) at HMS and MGH, directs the MGH Inflammation & Metabolism Computational Center and leads the Computational Genomics Group at Stanford Genome Technology Center. Dr. Xiao received his PhD from the University of California Berkeley. Dr. Xiao develops bioinformatic and statistical tools for use in understanding human diseases, especially in studies of immuno-metabolic response. He focuses on integrative analysis and interpretation of multi-dimensional molecular, cellular, and clinical data of many types of patients, including those with ME/CFS. Dr. Xiao’s expertise will be essential for the interpretation of the massive data sets that will be collected in this project.

    Donna Felsenstein, MD, Physician in Medicine and Assistant Professor of Medicine at HMS and MGH, is a senior attending in the Infectious Disease Unit at MGH. She has been diagnosing and caring for patients with ME/CFS since 1979. She has a large number of ME/CFS in her clinical practice, some of whom she has followed for more than 20 years. Dr. Felsenstein has participated in several clinical research studies on ME/CFS. Her clinical expertise in evaluating, diagnosing and treating patients with ME/CFS will be highly valued in the new OMF Center.

    Jonathan Friedstat, MD, Assistant Professor of Surgery at HMS and MGH, is an plastic surgeon who has been well-trained in clinical trial protocols and research. His expertise and competence will be essential for proper conduct of the muscle biopsies.

    Daniel Irimia, MD, PhD, Associate Professor of Surgery at HMS and MGH, is a longtime collaborator whose primary interest is in the role of neutrophils in sepsis. Daniel has developed an assay using neutrophil behavior within a microfluidic circuit that predicts sepsis with a high degree of precision (Nature Biomedical Engineering 2:207–214, 2018). Daniel’s expertise in neutrophils and neutrophil extracellular traps (NETs) will be important to clinical research in ME/CFS going forward.

    Amel Karaa, MD, Assistant Professor of Pediatrics at HMS and MGH, is a board-certified pediatrician with specialty in medical genetics. This is an expertise that is very much needed in our MECFS research for many reasons but particularly because many mutations are and have been discovered but there is little medical expertise to assist us to better understand the medical implications of these mutations. She treats many ME/CFS patients in the MGH Mitochondrial Disorders Clinic will be critical to coordinate and recruit patients as well as interpret the multiple genomic findings in patients. In addition, she is critical to coordination with the mitochondrial genomic specialists at the MGH Center for Genomic Medicine.

    Michael VanElzakker, PhD, Research Fellow at the MGH and HMS Martinos Center for Biomedical Imaging in the Neurotherapeutics Division, and lecturer at Tufts University. As a graduate student, Dr. VanElzakker wrote an influential hypothesis paper on the potential role of the vagus nerve in ME/CFS that has now been downloaded more than 10,000 times. Dr. VanElzakker’s expertise in neuroscience is focused on identifying abnormal patterns in brain metabolism, inflammation, structure, and function in this condition. He has enthusiastically engaged the ME/CFS community as both a scientist and patient advocate. Dr. VanElzakker will be critical to develop and conduct the neuroimaging clinical studies with the Martinos Center, which is one of the most advanced neuroimaging centers in the world.

    H. Shaw Warren, MD, Physician and Pediatrician at MGH and Associate Professor of Pediatrics at HMS, is an internal medicine physician with expertise in pediatric infectious disease. His role follows his extensive experience in research in inflammation, endotoxemia, and genomics. He currently directs a DARPA funded project entitled SPIRIT, which probes the differences in the host’s responses to infectious agents in multiple mammalian species. His research competence in these fields together with his clinical experience with ME/CFS patients will make a tremendous contribution to the new initiative.

    Yong Ming Yu, MD, PhD, Associate Professor of Surgery at MGH and HMS, is classically trained in nutritional biochemistry at the Massachusetts Institute of Technology (MIT). He is highly experienced in the in metabolism following the severe stress of injury and inflammation, prolonged fasting or nutritional depletion, and immobilization. His understanding of metabolism will be essential to understand the metabolic findings seen in ME/CFS patients.

    David Systrom, MD, Assistant Professor of Medicine at BWH and HMS, is a internal medicine and pulmonary disease physician with certification in critical care medicine. Dr. Systrom’s expertise focuses on cardiopulmonary function resulting in highly specific phenotype characterization of ME/CFS patients particularly those with POTS syndrome. His research involving ME/CFS particularly seeks to discover the link between small fiber polyneuropathy (nerve damage) and exertional intolerance. His participation in this new initiative has tremendous value to more precisely characterize ME/CFS patients with their ME/CFS disease characteristics and to study these well-characterized patients in clinical trials.

    Anthony Komaroff, MD, Distinguished Simcox-Clifford-Higby Professor of Medicine at HMS, and Senior Physician at BWH. He served for 15 years as Director of the Division of General Medicine and Primary Care at BWH. Dr. Komaroff’s contributions to ME/CFS include his pioneering work in the definition of, epidemiologic studies of the prevalence of the illness, and assessment of the biological changes present in chronic fatigue syndrome. He will be a consultant to the new OMF Center and he currently leads the human studies core at the Columbia NIH-funded ME/CFS Collaborative Center.

    Janet Mullington, PhD, Professor of Neurology at HMS and BIDMC, is Director of the BIDMC Clinical Research Center and directs the HMS Human Sleep and Inflammatory Systems Laboratory. Dr. Mullington is a well-respected expert in the physiological and neurobehavioral effects of insufficient and/or inadequate quality sleep including autonomic, metabolic and inflammatory system consequences of sleep loss. Her perspective and participation will be extremely helpful for our new initiative particularly as issues relate to the very common symptoms of non-restorative sleep and sleep disorders in ME/CFS patients.

    Janet Lord, PhD, Professor of Immunology, University of Birmingham, and Chair of Immunology. Dr. Lord directs the Institute of Inflammation and Ageing and the MRC-Arthritis Research UK Centre for Musculoskeletal Ageing Research. Dr. Lord brings together fundamental scientists and clinicians to translate the understanding of inflammation to new treatments for chronic age-related inflammatory diseases. Her research focuses on the dysregulation of immunity in old age, and in particular, the decline in neutrophil function and how this compromises the response to infection and tissue injury. Her knowledge and leadership in the natural findings of inflammation upon tissues will be critical to understand many of the findings that are discovered in ME/CFS patients in this new initiative. She brings two essential colleagues to the new OMF Center, Drs. Paul Greenhaff and Philip Atherton.

    Paul Greenhaff, PhD, Professor of Muscle Metabolism, University of Nottingham, is a physiologist and the Deputy Director of the MRC-Arthritis Research UK Centre for Musculoskeletal Ageing Research (Nottingham). Dr. Greenhaff is also an active member of the ARUK Centre for Sport, Exercise and Osteoarthritis and the Musculoskeletal Disease theme of the Nottingham NIHR Biomedical Research Centre. He is classically trained in the field of muscle metabolism with research interests centered on the loss of muscle mass and the dysregulation of metabolism in ageing, inactivity, inflammation, trauma and disease, and strategies to offset these pathophysiological events. His expertise will be critical to understand what the nutritional and sedentary effects are contributing to patients with ME/CFS in the new initiative.

    Philip Atherton, PhD, Professor of Clinical, Metabolic & Molecular Physiology, University of Nottingham is classically trained in stable isotope nutritional biochemistry, providing tremendous experience in the inflammation and metabolism fields. His laboratory is in the Royal Derby Hospital under the auspices of our UK Medical Research Council/Arthritis Research UK Centre of Excellence for musculoskeletal ageing research and the newly awarded NIHR Biomedical Research Centre (BRC) under a clinical musculoskeletal theme. His research seeks identification of central mechanisms regulating metabolism in human musculoskeletal tissues. These interests and expertise will be critical to the new OMF Center.

    Richard Smith, PhD, Battelle Fellow and Director of Proteome Research at PNNL, is also the Director of the NIGMS Biomedical Technology Research Resource for Proteomic Integrative Biology and the DOE ‘Pan-omics’ Program at PNNL. He is a pioneer in mass spectroscopy and proteomics technologies, is a long term collaborator with the faculty at MGH, and is the author or co-author of more than 1,000 peer-reviewed publications and more than 50 US patents. His continued development and application of innovative mass spectrometry technologies will be critical in identifying the proteomic and metabolic signatures of patients with ME/CFS in the new initiative.

    Jon Jacobs, PhD, Senior Research Scientist at PNNL, is currently the associate director of the NIGMS Biomedical Technology Research Resource for Proteomic Integrative Biology and the collaborative analytical support for the MGH lead DARPA project SPIRIT. His expertise lies in the development and application of advanced proteomic analysis techniques, specifically in the context of clinical studies focusing on complex disease signatures including inflammatory responses and chronic liver disease. Dr. Jacobs has a history of productive long term collaborations with MGH faculty through the application of proteomic approaches. His role will be to accurately direct the application of the advanced analytical technologies at PNNL towards the ME/CFS patient clinical samples for signature characterization.

    Wei-Jun Qian, PhD, is a bioanalytical chemist whose research centers primarily on global and targeted quantification of proteins and post-translational modifications (PTMs), particularly redox modifications and phosphorylation. Dr. Qian is currently a Senior Staff Scientist and the Team Lead for Proteomics at PNNL, and has been the recipient of the NIH Director’s New Innovator Award and the Presidential Early Career Award for Scientists and Engineers (PECASE). Dr. Qian’s team has significantly advanced the sensitivity and robustness of selected reaction monitoring (SRM)-based targeted quantification, thus enabling the direct quantification of extremely low-abundance proteins, protein isoforms, and PTMs for broad biomedical applications. Dr. Qian’s expertise in PTM and SRM efforts will directly benefit analysis of ME/CFS patient samples.
     
  19. minimus

    minimus

    Messages:
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    50
    New York, NY
    My appointment for the iCPET was moved up from mid-January to next Tuesday (11/20), a result of a cancellation. Jeff said a cancellation was likely when I talked with him at my initial appointment and he said I probably would not have to wait three months to get the test done. So it turns out there was a 1-month wait for the iCPET in my case.

    I am worried about the post-test crash, as my CFS has gotten worse in recent months. I am not bedbound, but I am housebound, as muscle pain/fatigue from walking kicks in over short distances now and leaves me feeling awful with PEM in the following days. (My ability to walk without fatigue and pain has gone steadily downhill in recent years, but then accelerated this summer.)

    All of the blood work Systrom ran came back normal in my case - no sign of autoimmunity (yet). I haven’t seen the results of the skin biopsy or the 24-hour urine test though. (He did order the Prostaglandin test...)

    I am hoping the iCPET will be a net gain - that the crash from the test won’t be too severe and will be outweighed by helpful treatment.

    Unfortunately I don’t feel like I have too many options left. Every doctor I have seen in NYC has been unhelpful - sending me from one specialist to the next, most of whom at most order some test and then ghost me, not even letting me know the test results. Susan Levine is very sympathetic, but she says she can’t do much to help people who have been sick with CFS as long as I have (20 years). Paul Cheney in North Carolina is still available for phone consults, and attributes my symptoms to CFS, saying I already have had a “silver plated” workup to rule out other diseases. In any case, I can’t find too many diseases that result in severe leg muscle fatigue and pain from walking and feeling like sh*t afterwards besides CFS, PAD, and lumbar stenosis. I have been tested for PAD, but not for lumbar stenosis.

    In any case, I hope I survive the iCPET.
     
    RebeccaRe likes this.
  20. RebeccaRe

    RebeccaRe Moose Enthusiast

    Messages:
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    1,790
    Massachusetts
    Good luck to you! It is a long day, but you'll spend the majority of it lying down. I think that I was only on the exercise bike for about 6-10 minutes (even though it felt like a very long 6-10 minutes!). Once you're done with the cycling they'll help you off the bike onto a reclining chair/stretcher just a few feet away and you won't need to sit up again for the rest of your time there.

    You can talk to Dr. Systrom's team about your concerns regarding PEM and ask for advice about minimizing it after the test. Hopefully you won't crash too hard, and the test will give you helpful information about what's going on in your body.
     
    minimus likes this.

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