1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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California 2014: IACFS/ME Day One: Translating Science into Clinical Care: 20 March 2014

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 22, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to submit a solid review of some of the highlights...

    [​IMG]
    The 11th biennial IACFS/ME conference is being held in San Francisco from March 20-23, 2014

    Conference objectives from Dr Fred Friedberg, IACFS/ME President:

    “The conference will a provide a number of fresh updated perspectives on CFS/ME, including new innovative professional workshops on management of the severely ill patient, pediatric CFS/ME, and an immunology primer for clinicians.

    “We do have several high profile speakers, including Ian Lipkin, MD, the “master virus hunter” according to the New York Times, and the lead investigator of a multi-site study that definitively found no link between the XMRV virus and CFS/ME. Dr. Montoya will talk about antiviral medications at the patient meeting – a first for the patient day agenda.

    “We also have as our keynote speaker, Stanford physician and best-selling author Abraham Verghese who will speak on the importance of the doctor-patient relationship in the context of high tech medicine. An expert on autoimmune disease, Noel Rose, MD, PhD will be our plenary speaker.

    “New research will be presented largely during the 3 day research and clinical conference.” Taken from an Interview for Phoenix Rising, January 2014.

    All members of Phoenix Rising will be able to follow events from each day's conference as they unfold - live - in the members-only forum, and also with highlights via Twitter.

    We will also aim to publish a public blog – such as this one – as soon as humanly possibly in the days following a conference, providing everyone with a chance to catch-up on events.

    The Stanford Symposium began this conference season and you can read our Standford review here.

    Professional's or Patient's?

    Searcher:

    “I got the attendee numbers from Dr Friedberg:

    33 patients all 4 days

    93 patients for patient day

    ~271 professionals for 3-4 days.

    Total= 397 attendees

    He thinks it's the highest attendance has been in about 15 years! :)


    Initially, we were presented with a dilemma. Two forums had been uniquely established for the first day of the four-day conference in San Francisco: a Patient version and a Professional one. But which to attend? Decisions, decisions...

    Searcher opted for the Professional Day, as she wanted access to more of the research and clinical discussions, and she will be at the conference for the duration - until Sunday, March 23.

    She managed to take notes from several of the workshops and her press pass enabled recordings to be made, which we will be using to help us write some more in-depth articles at a later date.

    However, we have also now been able to complement her review with some notes taken by another patient, Hope, who attended the Patient Day, and these can be found at the bottom of this blog.

    Taken together, and despite the lack of Wi-Fi (in San Francisco?!), necessitating some frantic after-presentation uploads, we are delighted to finally present an overview of the first day's conference from IACFS/ME.

    Professional Day - Joint Session Welcome & Introduction

    [​IMG]
    Fred Friedberg, Ph.D. President, IACFS/ME Research Associate Professor, Stony Brook University


    [​IMG]
    Jose Montoya, M.D. Professor of Medicine, Stanford University Medical Center

    Searcher 08.20:

    “Fred Friedberg gave an intro, mostly focused on logistics. Today's meeting will include some self-care techniques.

    “Next: Dr Montoya. He gave a warm shout-out to patients who are bed-bound or house-bound so can't attend the conference :)

    The Stanford ME/CFS Initiative:

    “To become a center of excellence that improves the health of patients with chronic diseases in which infection or its immune system plays a major etiologic role”

    “Dr Montoya is thanking everyone on his team for helping out with research. He thanked Dr Lipkin for all he is doing.

    “As he mentioned yesterday, it's very important to use a standard, rigorous approach including double-blind studies.

    “They have successfully set up a biobank with 200 patients who are not taking antimicrobials along with 400 age and gender matched controls. They are currently doing immune, genetic, and pathogenic studies on these biobank members.

    “Today is standing-room only again...

    “Small Game Hunting”

    [​IMG]
    Joint Session Special Guest Speaker: Ian Lipkin, M.D. John Snow Professor of Epidemiology & Director, Center for Infection and Immunity, Columbia University

    Searcher 08.29:

    “Ian Lipkin said he gets 2-3 messages a day thanking him and urging him on.

    “Ian Lipkin first worked with Chronic Fatigue Syndrome when the CDC approached him to investigate the large number of patients in Japan with ME/CFS.

    “There's a lot in common with yesterday's session by Ian Lipkin, so I wanted to share more formal notes summarizing yesterday's session:

    “They are consistently look for new infections outside of humans too (many originate outside)

    “Making use of High frequency sequencing (next generation sequencing)

    Of Microbes and Men: Tales of a Small Game Hunter

    For additional interest - a similar presentation from November 2013 (click image):

    [​IMG]“For this year’s Charles Simonyi Lecture we welcome Ian Lipkin the “World’s Greatest Virus Hunter” (Discover Magazine).

    “Using his experience studying HIV/AIDS, SARS and pandemic influenza, Ian will review how bacteria, fungi and viruses cause illness, why new infections appear and the implications of the emerging field of microbiology.”


    Models for bacterium-triggered mental illness (like schizophrenia example):
    • agent could be lurking anywhere, then invoke an immune response (hence the importance of the examination of antibodies)
    • toxins can be important as well, although present as infectious diseases
    • a Plant in Minnesota processed pork, and originally considered it as an infectious disease (but air hose blowing the myelin out, so workers exposed to large amounts of CNS tissue and developing antibody --> exaggerated immune response to these like an allergy response)
    • it's not actually an infectious disease but immune response
    Kawasaki disease: inflammation of blood vessels + fever (kids die if not treated with IVIG or electrophoresis? death by cardiac arrest):
    • association of Kawasaki disease with tropospheric wind patterns
    • eliminate contaminants that confound 16s Analysis (in equipment); treat them by getting rid of the bacteria
    • lots of candida in atmosphere, resulted in autoimmune response?
    “His theory: ME/CFS is very complex, can be open to a wide range of interpretations - but not psychosomatic :)
    • discovery of tick-borne viruses by high throughput sequencing (maybe not just borrelia but another bacterium)?
    • initially got into CFS: "absence of evidence of Borna disease virus infetion in Swedish patients with CFS),XMRV garnered support at the NIH for pathogen search
    “Chronic Fatigue Initiative - Pathogen study (as yet unpublished):
    • Masstag PCR and Consensus PCR screening: found 2 HHV6 positive, 1 parovirus B19 (control)
    • extracted Nucleic acid from 486 plasma samples, found HHV6 in 6 plasma samples (very smalll precentages)
    • retroviral reads present in 85% of sample pools
    • annelloviruses found in 75% of sample pools -- associated with immune suppression and commonly found in high throughput sequencing
    • PBMC --13% positive for HHV6 but 11% positive for HHV6 (samples v. controls)
    • cytokines: elevated levels of IL 17, etc
    • dramatic increases of cytokines, decreases of ....in longterm v. shortterm CFS
    “He expressed caution - modulation of the immune system is very dangerous

    Batch effect in CFS (RNASeq Project); the way it is set up changes the dataset:
    • in science, one has to be able to replicate data
    • messed up and had to redo the experiment
    • future CFS studies: RNA Seq, CFS gastrointestinal microbiome, Metabolomics, Proteomics, High-throughput sequencing of PBMC (but need funding)
    “Question from audience:

    Why not look at tissues if doctors have found enteroviruses and endogenous retroviruses elsewhere?

    - They're not going to be the prime mover but set off an inflammation response (like schizophrenia, MS)

    - The prodrome seems to be an upper respiratory infection

    - Originally wanted to do fecal and PBMC samples

    - Microbiome that we should access should be relatively a-traumatic

    - Bowel abnormalities in children with autism

    - Has applied for an NIH grant for ME/CFS

    - If pregnant woman gets fever, higher chance the fetus develops autism (genetic susceptibility and environmental factors).


    Searcher 09.26:

    “Q&A with Ian Lipkin:

    “Most answers are paraphrases unless in quotes.

    Ian Lipkin: Some of the agents we have identified in ticks have not been studied yet. If anyone wants to collaborate with us let me know.

    “Question: don’t you think the particular problem in ME/CFS is the Th1/Th2 balance and not a particular agent?

    “Answer: Yes and know. There is a cytokine problem but I think something is triggering that whether an infectious agent, toxin etc. I don’t think it’s idiopathic.

    “Question: How do you recognize the cohort you will use to look at the tick-borne viruses?

    “Answer: I rely on the clinicians. We would love two time-points: once when someone is acutely ill and once when they are well.

    “Question: Autism Spectrum disorder. Is there an associate with HHV-6?

    “Answer: “No.”

    “Question: Will the microbiome research include Crohn’s disease and its relationship with ME/CFS?

    “Answer: We are not doing research on Crohn’s disease but there are researchers looking at Crohn’s at University of Maryland.

    “Question: As a family physician I have seen an increase in ME/CFS in people involved in equestrian activity. Any relationship with ME/CFS?

    “Answer: This is a really interesting question…. When we did research we used horses as a control for a virus but found they had higher levels than dogs for the virus…. So we are very interested in agents that originate in horses. In my opinion horses have been understudied and bats overstudied.

    Searcher 09.28:

    “Additional paraphrased Q&A:

    “Is it possible that there are individuals that have multiple exposures to vaccines have some sort of abnormal immune response? I am open to that possibility.

    Immunology Primer for Practitioners

    Participants of this workshop will receive a brief overview of the immunology of Chronic Fatigue Syndrome including a review of the basic tenants of the innate and acquired immune system with special emphasis on cytotoxic T-cells, natural killer cells, B-cells, and an overview of cytokine formation and function.

    Recognized experts in these fields will additionally present the current status of research into the function and dysfunction of these elements of the immune system in CFS/ME and proceed with brief presentations of cutting edge research studies.

    Participants by the completion of the discussion session should be able to appropriately order and interpret diagnostic immunological studies on patients presenting with the diagnosis of CFS/ME. This will facilitate the diagnosis, aid in determining prognosis and enable application of appropriate treatment for subsets of patients.

    Finally, a consensus panel will provide a discussion of cost effectiveness, commercial availability, and appropriateness of immunological testing in CFS/ME patients.

    Searcher 09.50:

    “I’m at the immunological session now, which has a primarily professional audience. It is one of four workshops here for professionals, along with one patient track. Dr Peterson is leading it off.

    “He is talking about the two branches of the immune system: Innate and Acquired. They interact in a very complex manner via cytokines.

    “I will check in after the session with a summary...

    [​IMG]
    Sonya Marshall - Gradisnik, BSc (Hons), Ph.D. Professor of Immunology, Director, National Centre for Neuroimmunology & Emerging Diseases, Griffith University, Australia

    Searcher 10.13:

    Natural Killers don’t just do lysing, they also affect the adaptive immune system. They affect the T cells and the B cells. They have a bigger immunomodulatory affect than we knew before.

    NK Cell Function:
    • Natural Killer cells lyse using a protein called perforin, according to the current literature. But there is new research indicate it’s not simply perforin. They lyse using multiple methods.
    • NK Cell receptors are either inhibitory or activating. They work together.
    • She is publishing on MicroRNAs in ME/CFS Patients. They have found consistency with other groups in NK cell lysing. The NK cell lysing is reduced.
    • They’ve looked at 250 patients, grouped into severe, moderate, and healthy controls.
    • They look at a longitudinal assessment (0 months, 6 months, 24 months) to give confidence that NK cell lysis is actually reduced, which they have found. Significant reduction in Interferon-gamma in NK bright cells.
    • CD107 degranulation- significant increase, suggesting impaired degranulation.
    • Does severity play a role in NK cell function? They looked at 20 severe, house-bound/bed-bound patients. There was a significance in the reduction in NK cell lysis.
    • Looking at subtypes of NK cells are important. Appears to be lower activating of certain receptors in severe patients and moderate patients. Certain inhibitory receptors have been found to be greater in severe and moderate patients.
    • Interesting to compare NK cell function in Rheumatoid arthritis, MS, and ME/CFS.
    Searcher 10.34:

    [​IMG]
    “I put up a photo of the break room so everyone can feel like they're here :)

    Searcher 11.18:

    Nancy Klimas, M.D. Ph.D., Professor of Medicine and Director, NSU COM Institute for Neuro-Immune Medicine Director, Miami VAMC Gulf War Illness and ME/CFS Research Program

    [​IMG]

    “You need more than one thing wrong in the immune system to get sick. You need more than one thing broken to explain the illness known as Chronic Fatigue Syndrome.”

    “Speaking about cytotoxic T cells:
    • Acquired immunity is the focus of cytotoxic T cells. NK cells evolved first. We evolved from innate to acquired immune systems. Sharks are still on NK cells. Cytotoxic T cells are like NK cells with targets that they can ramp up to.
    • Antibodies are produced by a subset of lymphocytes called B cells
    • Cell Mediated Immunity— Helper T cells (CD4) and cytotoxic cells (CD8.)
    • Too many of one cell around is lymphoma or leukemia. We need the ability to shut things down.
    • T cells only recognize antigen associated with MHC Molecules on Cell
    • cytotoxic T cells destroy target cells exactly the same as NK cells via perforin and granzymes.
    • cytotoxic T cells in ME/CFS cannot be considered alone since it interacts with so many other systems.
    • We need to look at the networks of chronic fatigue patients vs healthy controls. (She usually uses the term “chronic fatigue” but I think it’s because she is talking so fast and she definitely means nothing by it.)
    • “You need more than one thing wrong in the immune system to get sick. You need more than one thing broken to explain the illness known as Chronic Fatigue Syndrome.”— Nancy Klimas
    • Biomarkers can be therapeutic markers.
    • Neuropeptide Y is like norepinephrine the way it hits the sympathetic nervous systems and is increased in patients, and tracks with severity in a study with 101 controls, and 93 patients.
    Searcher 11.27:

    “Sorry guys, am fading so things will slow down for a bit...

    Paula Waziry, Ph.D, Assistant Professor, Neuro Immune Medicine, COM, Nova Southeastern University, Miami, Fl
    • ME/CFS Symptoms can be triggered by stressful event (like exercise) and is coincident with symptoms of virus reactivation. Sometimes antiviral supplements makes symptoms better.
    • Viral infection reactivation: genetic predisposition+environmental components+ epigenetic effects on gene expression.
    “There was a lot more so I will see if I can get her slides later...

    Invisible and ignored: Treating the Severely Ill Patients with CFS/ME and Fibromyalgia (FM)

    Up to 25% of persons with CFS/ME or FM may be housebound or bedfast, yet little is written about this severely ill but “invisible” population.

    Dr. Lapp will discuss the unique symptoms and complications seen in this group, and offer management strategies.

    Dr. Elin Strand and Irma Pinxsterhuis will also discuss their experience managing chronically and severely ill patients from the ME/CFS Unit at Oslo University Hospital, Norway.

    Searcher 14.03:

    [​IMG]
    Charles Lapp, M.D., Medical Director, Hunter-Hopkins Center

    “There are many scales that can be used to capture severity. Bested Functional Capacity Scale is one.

    One rating Scale suggested by Dr Lapp:
    • Bedfast (critical)
    • Housebound, severe (grave)
    • Housebound
    “A doctor asked about paralysis in severe patients. Dr Lapp explained that sometimes people have paralysis upon awakening.

    “Dr Komaroff had a patient who had paralysis on one entire side, including the face (which is very rare.) His motor homunculus had decreased blood flow on the one side. It can also involve severe OI.

    The sicker the patient, the more comorbidities they tend to have:
    • 85% of his patients have IBS
    • Up to 80% have irritable bladder or IC
    • 50% of his patients have OI, and 100% of Peter Rowe’s pediatric patients.

    Searcher 14.15:

    Symptoms sometimes or often seen in severe patients according to the experienced physicians in the audience:
    • Recurrent Infections (IVGG can help)
    • One doctor had a patient who had to remind herself to breathe.
    • According to Dr Lapp none of his fellow clinicians has found an explanation for why people will often be short of breath at rest but it is common.
    • Food and chemical sensititives
    • Visual problems
    • Difficulty swallowing leading to dehydration
    • Nausea (likely an ANS problem, like an autonomic gastroparesis)
    • Severe hypotension
    • Memory Loss (blackouts)— literally can’t remember some periods of time
    Unique Complications:
    • Delayed Onset Muscle Soreness
    • Inability to eat->functional malnutrition->weight loss->feeding tube
    • Pressure Sores
    • Contractures
    • DVT
    • Osteoporosis
    Searcher 14.27:

    Treat sleep > pain > comorbidities > investigational therapies

    “Ideas from Dr Lapp and audience:

    Sleep is often shallow, broken, and non-restorative:
    • Goal: avoid advance phase shifting, moderate sleep (8-10 hours)
    • Remember that resting quietly is almost as good as sleep, which is important to remember for patients.
    • Meditation or self-hypnosis can get patients into a more restorative state.
    • Important to look at sleep disorders
    Pain cannot totally be relieved:
    • Goal: improve function, allow rehab
    • Avoid narcotics if possible (rely on NSRI’s, AED’s, physical therapies)
    Cardiac output:
    • the most severely ill patients have co-morbid hypovolemia
    Treatment axioms:
    • Don’t attribute all symptoms to CFS/ME/FM. Always look into them, don’t explain them away
    • Start slow, go low
    • Consider liquids, crystals, or gummies
    • Have meds delivered whenever possible
    • Myoclonus, restlessness, PLMs can be improved by conzapem or gabapentin
    • Spasms and contractors can respond to baclofen. Magnesium and potassium helps some patients.
    Searcher 14.42:

    “Dr Lapp recommends some books and websites, including www.ayme.org.uk and the IACFS/ME Primer.

    “He has written to a few of the severely ill patients with blogs to get more info and hasn't heard back, but obviously understands.

    “He said the NICE guidelines on severe patients weren't helpful and are "not very nice."

    The Physician-Patient Relationship in the Genomic Era”

    [​IMG]
    Joint Session Keynote Speaker: Abraham Verghese, M.D.
    Professor of Medicine, Stanford University Medical School
    Best-selling Author, Cutting for Stone

    Searcher 17.10:

    “Keynote speech is by Abraham Verghese, and the focus is on the doctor-patient relationship.

    “He's a good friend of Dr Montoya, and he greatly admires him.

    Searcher 17.15:

    “I should have a lot more notes to share later today when I have a better internet connection...

    “Several other patients have been taking notes at different sessions that I will work on tying together.

    Searcher 17.20:

    “Dr Verghese is giving a history lesson on medicine. It's funny but probably won't come across too well via blog/twitter.

    “I am going to check out for now but will be back in the evening with more info from today's sessions...

    Searcher 17.25:

    “One interesting anecdote from today: I spoke with a few researchers. One of them told me he is very interested in getting at the root of alcohol intolerance since he has heard about the symptom from so many patients.

    “He wants to a study that shows what cytokines are expressed after patients drink alcohol, as that may help us understand the underlying pathology better.

    Searcher 17.34:

    “Sorry, had to add one quote from Dr Verghese:

    “The average American physician interrupts their patient within 14 seconds.”

    “He has his patients tell them their story during their first appointment. He doesn't do an exam - he wants to give them time and not rush them.

    Searcher 17.40:

    “He showed some quotes from his article in Ann Intern Med called “The Bedside Evaluation: Ritual and Reason”.

    “It looks worth reading as the quotes reflect what most of our doctors don't do; they focus on labs and entering data into their computer instead of focusing on the patient.

    Patient Day Notes:

    Searcher:

    “A few other patients kindly took notes during the patient sessions when I was at the professional sessions, so I should hopefully receive some notes tonight or tomorrow depending on how the patients are feeling (It was a tough day)...

    “I did want to write up a few quotes from one of today's patient sessions in the mean time:

    New Developments in Possible Causes of ME/CFS

    [​IMG]
    Anthony L. Komaroff, M.D. Simcox-Clifford-Higby Professor of Medicine, Harvard Medical School

    “Komaroff said in regards to Montalvo and Jarred Younger's studies:

    “A hormone called leptin was found to be tightly correlated to many of these pro-inflammatory cytokines, and to be the most distinctive difference between CFS patients and control subjects.”

    “The link was remarkably tight.

    “In regards to Dr Light's study:

    “The more severe the symptoms of Post-Exertion Malaise were, the higher the levels of most of these molecules he was studying" when looking at ME/CFS patients 48 hours after exercise. The molecules hardly moved in healthy subjects.”

    “Many studies have found a number of auto-antibodies in Chronic Fatigue Syndrome.”

    “His conclusion:

    “There's abundant evidence that the illness is not simply the expression of physical symptoms by people who have a primary psychological disorder...

    All of the studies I summarized today demonstrate underlying biological abnormalities that involve the brain and autonomic nervous system, the immune system, energy metabolism, and oxidative and nitrosative stress.​

    The biological process correlates with the severity of the symptoms, and we need to better understand the biological process so we can treat it.”

    Patient Day summary from Hope:

    Note: Hope was another patient who wanted to attend the conferences and managed to do not only that, but also took some great notes and gave her permission for us to publish them. We would love to hear from anyone else who is still attending the conferences and might like to submit their notes to us for use in any later blogs. Thank you :)

    The Experts on Medications for CFS/ME

    Initial Approach to Management

    [​IMG]
    Charles Lapp, MD Medical Director, Hunter-Hopkins Center
    • Energy envelope: stay within the boundaries (symptoms worsen if body functions beyond current capacities, so overtime patient will restore energy, lessen pain and other symptoms, lessen illness severity)

    • Think about person with Me/CFS as battery with 20% (envelope theory related to perceived energy)
    • Buddy system improved in terms of vitality and energy conservation (vitality v. baseline/post treatment timeline)
    • Helping individuals monitor and stay within energy envelope has helped levels of functioning over time

    • Self regulate!!!!
    Treatment strategies:
    • 4 cardinal symptoms: pain, cognitive difficulties, fatigue, sleep disruption (non-restorative sleep)

    • Comorbidities: IB, IBS, migraine, Sicca/Sjorgen’s complex (dry mouth and dry eyes), POTS, Gluten sensitivity, Prostatosis, chemical sensitivities

    • Standard addressing of symptoms (sleep, pain, fatigue)
    • Managing sleep problems: suggested list of pharmacological therapies and non – pharmacological (rest, cold/heat packs, balneotherapy, massage, PT, chiropractic, acupuncture, ENS, EMS)
    • Characteristics: exertional, positional, hypersensitivities, stress intolerance
    • Plan for days of recuperation after exertion
    • Can and must be active – objective limits of aerobic interval activity, heart rate limited, pedometer
    Therapies:
    • POTS: water, salt
    • Modified Elimination Diet (avoid gluten, dairy, SCANT – sugar, alcohol, nutrasweet, tobacco)
    • Viral or immunological symptoms (Valtrex, inosine, nexavir, valycte)
    • Human growth hormone?
    • Ampligen
    • Rituxan/rituximab; TNF alpha inhibitors


    Theoretical approaches:
    • Coagulation defects

    • Marshall protocol
    • Nitric oxide
    • Glutathione/methylation defiency
    • Cardiomyopathy
    • Toxic exposure
    • Stem cell therapy
    Final reflections:
    • No known cause or cure

    • Most important to stay within limits imposed by intervals, heart rate, steps per day

    • Symptomatic therapy focuses on sleep management and pain control
    Antivirals

    [​IMG]
    Jose Montoya, MD Professor of Medicine, Stanford University Medical Center
    • Herpes viruses are ubiquitous, infect a significant proportion of individuals and establish life-long latency
    • Example of HHV6-stricken researcher, detected in blood and spinal fluid during height of researcher’s symptoms, but not presented in health controls
    • Good candidate for the trigger of the illness
    • life-long latency – once infected, difficult to remove them from system
    • 8 Herpes: HSV 1, 2, VZV (chicken pox), HHV5 CMV, HHV6 and 7, HHV4 (Ebstein barr), Kaposi’s sacrcoma associated herpes (8)
    • When genital herpes recur, then symptoms flare with the activation
    • Herpes viruses have been known to activate even without obvious physical lesions
    • Disease model: herpes 2 is reactivated periodically in health individuals, goes into the spinal fluid, causes meningitis (without individuals being immunocompromised)
    Antiviral approach:
    • Acyclovir, Famciclovir, Valtrex, IV ganciclovr, Valcyte, IV foscarnet, IV cidofovir, Combination therapy
    • Leflunomide (CMV IgG) – immunomodulator used in RA
    • Infusion of CMV specific T spells (sepsis patients)
    Possible candidates for Antiviral therapy:
    • Ascertain patient has ME/CFS
    • PCR positive patients
    • Oral Herpes HSV1
    • Genital herpes HSV2
    • Shingles VZV
    • High titers against EBV VCA, EBV EA, HHV6, HSV 1, HSV 2
    • HHV7,HHV 8 (very rare in America)
    • When everything has been tried, go with fluctuating but suggestive symptoms

    Dose of antiviral regimen:
    • Give lowest dose then increase as tolerated
    • Remarkable worsening in the beginning phase
    • Is duration important? Longer valcyte treatment correlated with improved response
    • Trial published for 5 months acyclovir not effective
    • Valcyte results graph: cognitive function improved significantly; many patients OVEREXERT AND GET PEM
    Antiviral therapy of 2 patients with chromosomally-integrated HHV6:
    • Improvement after foscarnet
    • Indicative that antivirals work for CFS patients, but difficult to determine WHO needs antivirals?
    Immunomodulators

    [​IMG]
    Nancy Klimas, MD Professor of Medicine & Director, Nova Southeastern University Director, Miami VAMC Gulf War Illness & ME/CFS Research Program

    Exercise stress test and then test for cytokines compared to baseline:
    • Dynamic challenge studies
    • Genomic results
    • RedCAP platform for assessment
    • Computational biology/modeling analysis with data scientists
    Publications: homeostatic drive in perpetuation of complex chronic illness – GWI and CFS:
    • After being pushed over, can your body be pushed back into balance?
    • Mining Drug-action data:
      • 95% of immune system is in lymph nodes and immune system
      • Reverse directory for drugs
      • for example, reverse TNF drug, test on animals/humans, potential repurposing of anti-TNFa Infliximab
    Overview of the Immune Response:
    • Immune abnormalities:
      • Functional defects (NK cell dysfunction, C8 cells)
      • Immune activation: DR, CD 26 expression
    Immunomodulatory:
    • Ampligen (both immune modulator and antiviral) but failed to pass FDA
    • biologic response modifiers (targeted approaches) – Humera
    • Rituximab (phase 2); deplete B cells
    • Alpha and gamma interferon (Chia talk)
    • Isoprinosine (Phase 2)

    Reducing inflammation:
    • Omega3 quiets TNFa, LDNF reduces neuro-inflammatory pathways
    • Food and allergens
    Antivirals: help with immune exhaustion

    Immunovir (Newport Pharma), Inosine (OTC) - start LOW LOW LOW dosage and titrate up because people feel ill when clearing bugs

    Fibromyalgia Update

    [​IMG]
    Lucinda Bateman, M.D. Fatigue Consultation Clinic


    [​IMG]
    Jarred Younger, Ph.D. Assistant Professor of Anesthesiology Stanford University Medical School

    Fibromyalgia patients: 25% improve over an 11 year period, 39% get worse

    The problem of fibro is that there are so many levels to examine – DNA, RNA, etc. Is the problem in the muscles or the central nervous system?

    Most people believe: Fibro is a central sensitivity disorder, despite fact that you feel it in the body:
    • Analogy of a car alarm – everything including flying bird makes you feel horrible and sets off the alarm
    • Pain = bodily alarm system, most important sense, tells you when you’ve gone too far (tells you when you shouldn’t be doing this)
    • Fibro: threshold dramatically lowered like getting groceries/gardening , faulty alarm system
    New research:
    • The flu – cytokine induced sickness response (body aches, fatigue, cognitive dysfunction, sleep disturbances, depressed mood, social isolation, headache) → results from the immune system
    • Microglia (cell in the brain) – responsible for protecting us from everything:
      • Looking for cell death, bacteria, viruses
      • Microglia activation: When find problem, change shape and pump out chemicals affecting neurons and changing the way their function (neurons fire and make you feel “sickness”)
      • With Fibro/ME/CFS, the microglia are the worst instead of the best in terms of the sickness response
      • Primed microglia (triggered when exposed to huge immune hit like Lyme, chronic disease, aging, opiates for long term use, obesity – release of leptin from fat cells)
      • Sensitized microglia: over-express receptors, keep in active state, least factor will set them off and feel horrible
      • Issue: can’t test theory directly because too invasive:
        • Doctors can’t get into the brain for direct testing of hypothesis
        • Another problem: when diagnosed with fibro, all other tests cease, so fail to do external tests (small fiber peripheral neuropathy, vitamin D deficiency, central nervous leak) so it’s important to continue to do tests
    • Day to day variability (how to track this?)
    • Also tracked Leptin – 'a cell that plays a key role in energy intake and expenditure including appetite and hunger, metabolism, and behavior'. And they found that as people’s pain increased, Leptin increased

    “The Physician-Patient Relationship in the Genomic Era”

    [​IMG]
    Joint Session Keynote Speaker: Abraham Verghese, M.D. Professor of Medicine, Stanford University Medical School, and Best-selling Author, 'Cutting for Stone'.

    “What ET sees: rounds removed from the living patient, rounds centered around the iPatient, no need to examine patient, bedside = toxic, point of admission is to reduce 3d patient to 2d

    “Joseph Leopold Auenbrugger – “new invention” book was seminal of its time

    “Physician Jean Corvisart was physician to Napoleon Bonaparte

    “His student discovered the stethoscope

    “Back then the barber surgeons treated everyone, but the carrying of the stethoscope signaled to the world the transition from barber surgeon to physician; it was a moment with tons of discoveries of medical equipment

    “Luke fildes: the doctor = seminal painting (child occupies the center of the painting, the doctor is in a passive; “I was ill and you cared for me” Matthew 25:30 → calls to the Samaritan functioning as being of a physician

    “Stanford medicine 25 sessions – bedside manner with real patients (hands-on session)

    “Relationship between doctor and patient is a human-human exchange, embody the Samaritan qualities, human understanding, empathy, human skills

    “Straying from this = great disservice

    “Questions:

    The success of alternative medicine is the abundance of hands-on interaction

    “How do you propose to get the computer out of the exam room?

    “It mostly is related to billing, monopolize the system

    “Exposing the ludicrousness of this

    “Lost privileges when didn’t complete the ICD coding training in EPIC (exemplified how the medical profession is so far removed from the patient experience)

    “Health care in America –ordering tests instead of examining and talking to the patient

    “Do patients have a role in treatment guidelines: if we have a doctor physician test to examine how to examine a patient (ACTUAL TEST V. MULTIPLE CHOICE).

    “Who determines whether the physician is good at diagnosing?

    “HIPPA: doesn’t see the point of it

    “Given the multi year wait list for Montoya, and the apparent urgency of ME/CFS as a field needing physicians, how do you propose a strategy to train future Montoya’s:

    “Answer: the dearth of physicians is related to reimbursement issues, what is societally-valued?

    “CFS is not a sexy field to enter

    “Long wait list due to how unique his treatment is

    The End of Day 1 of the IACFS/ME Conference from San Francisco.


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  2. Gamboa

    Gamboa Senior Member

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    WOW, Searcher, You have done an amazing job at covering this conference. I have just returned from California, back to Ottawa Canada and snow!, and will slowly read your coverage as I am able to. It was great to meet you and hopefully we will see each other again and have more time to actually chat. Hope you aren't suffering too much from expending a tremendous amount of your valuable energy capturing and reporting all this great information for all of those unable to attend.
     
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  3. Gamboa

    Gamboa Senior Member

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    Canada
    Thanks also to Hope, who also contributed time and energy to enable us all to have a concise and excellent coverage of the conference.
     
    ggingues and Firestormm like this.

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