1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
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California 2014: IACFS/ME Day Two: Translating Science into Clinical Care: 21 March 2014

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 23, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who presents on enteroviruses and we close with Nancy Kimas and Dan Peterson discussing diagnosis and treatments...

    [​IMG]
    The 11th biennial IACFS/ME conference is being held in San Francisco.
    Day Two, Science Papers, March 21, 2014.

    We really are getting stuck into some serious science from our top researchers. Day Two (March 21, 2014), of the IACFS/ME four-day conference featured the presentation of new scientific papers.

    And yet it began with a great overview of autoimmunity, obviously a popular and perhaps increasingly relevant topic for discussion at the moment, by Dr. Noel Rose, and the day closed with a review of diagnosis and treatment possibilities, delivered by Dr. Nancy Klimas, and Dr. Dan Peterson and with much audience participation.

    We will be publishing more in-depth features on the papers that were presented - the ones featured below and the ones that were missed - once we have had time to properly digest all the incoming information including our recordings.

    As before, the following is a collation of the live notes submitted by our intrepid patient reporter, searcher, who remains at the conference until the final day - which is actually today!

    Friday, March 21st, 2014

    Plenary Session: How Do We Recognize an Autoimmune Disease?

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    Noel R. Rose

    Noel R. Rose, M.D., Ph.D. Director, Center for Autoimmune Disease Research, Johns Hopkins University School of Medicine

    Searcher 08.52:

    “Autoimmunity - an immune response to normal antigens of the host

    “Autoimmune disease - disease caused or significantly promoted by autoimmunity - self-reactive T cells/B Cells

    “The Professor said when he went to medical school (60-something years ago), they were taught auto-immune disease didn’t exist. But now we know everyone has some auto-immunity. But those of us who are healthy can regulate our self-reactive antibodies

    “It is a common disease. At least 80 diseases affecting every organ system

    “14.7 million to 23.5 million people in the USA have an autoimmune disease:
    • Among the 10 leading causes of mortality among woman under 65
    • No cures for any auto-immune diseases even though many can be managed
    • Heart disease (22 million), Cancer (9 million)
    • Cancer and Heart Disease are decreasing, autoimmune diseases increasing

    Searcher 08.56:

    “Evidence for autoimmune diseases:
    • Direct
    • Indirect
    • Circumstantial
    “Direct Evidence- transfer of disease:
    • Ability to transfer serum to humans or other animals
    • Maternal-fetal transfer
    • Reproduction in vitro (e.g. hemolytic anemia)
    • Cell transfer (SCID mouse)
    “T-cells are harder to tell, B-cells are easier to show a disease is caused by a specific antibody

    Searcher 08.59:

    “Indirect Evidence- Experimental models:
    • Reproduction w/ equivalent antigen
    • and more
    “Circumstantial Evidence:
    • Autoantibodies
    • All autoimmune patients have autoantibodies, but not all with antibodies have an autoimmune disease
    • Clustering
    • HLA association
    • Sex Bias (75% occur in women)
    • Response to immunosuppression
    Searcher 09.09:

    “There are diseases that present like autoimmune diseases, can be treated similarly, but don't involve uncontrolled T and B cells so are not autoimmune per se.

    “Why do we think there is a genetic disposition?

    Commonly:
    • Family Clustering
    • Multiple autoimmune diseases
    • 30% twin concordance
    • MHC (HLA)
    • Immunoregulatory genes
    “Evidence on the epigenetic involvement in Lous:
    • CD4+T Cell changes
    • B cell changes

    [​IMG]
    “Dr. Noel Rose wrote a book called “The Autoimmune Diseases” that is a good compilation of our knowledge on various autoimmune diseases.”
    Fifth Edition - 2014

    “A long list that have been reputed to act with a genetic predisposition

    In no particular order:
    • Drugs (Lupus and MG definitely, drug causes them, so take away drug → illness goes away)
    • Viruses
    • Bacteria (e.g. beta hemolytic streptoccocus)
    • Foods (e.g. excess iodine)
    • Pollutants (e.g. mercury)
      • very hard to study
    • Hormones
    • Stress (hard to quantitate)
    “Many diseases of unknown etiology show evidence of an autoimmune response, but autoimmunity can be the result, not the cause of the disease process.

    Searcher 09.12:

    “Narcolepsy is a good example of an autoimmune disease:
    • Well defined criteria: yes
    • HLA association: yes
    • Sex Bias: no
    • Environmental trigger: yes (vaccines!)
    • Relevant antibodies: yes
    • Relevant antigens: yes
    • Reproduction in animal model: no
    • Response to immunosuppression: unknown
    Searcher 09.24:

    Q: Can reversing environmental factors remove auto-immune responses instead of using drugs to treat the disease?

    A: Yes, it can. It works in rheumatic heart disease. He calls finding the environmental trigger the “low-tech approach”. Working on genes is expensive and risky.

    Q: Can microorganisms create antigens that interact with auto-antibodies?

    A: Yes, although not antigens but the organism itself. Called molecular mimicry. Has been easy to prove in animal models, harder in humans. One form of Guillain Barre disease works this way.

    Session: The Latest Research in Immunology

    Session Chair: Nancy Klimas, M.D. Immediate Past President, IACFS/ME Professor of Medicine & Director, Nova Southeastern University Director, Miami VAMC Gulf War Illness & ME/CFS Research Program

    Allergy-Related Immune Signatures and Duration of Illness in CFS

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    Susan Levine

    Susan Levine,1 Xiaoyu Che,2 ,2 W. Ian Lipkin,2 Nancy Klimas,3 Lucinda Bateman,4 Dan Peterson,5 Donna Felsenstein,6 Elizabeth Balbin,7,8 Aundrea Carter,9 Korinne Chu,7 Mary Ann Fletcher,3 Anthony Komaroff,6 Gail Ironson7 and Mady Hornig2

    1Private practice, NY, NY; 2Columbia U Mailman School of Public Health, NY, NY; 3Nova Southeastern U, Fort-Lauderdale-Davie, FL; 4Fatigue Clinic, Salt Lake City, UT; 5Simmaron Research Inst, Incline Village, NV; 6Harvard Med School, Boston, MA; 7U of Miami, Miami, FL; 8Miami VA, Miami, FL; 9U of North Carolina, Greensboro, NC; 10Physicians for Peace, Norfolk, VA

    Searcher 09.47:

    “Allergy-related cytokines:
    • IL4 (produced by TH2 cells)
    • IL13 (Produced by NK and TH2 cells)
    • IL10 and gamma interferon are protective
    Eotaxin:
    • produced in asthmatics and in patients with food allergies, and in worm infections
    • produced by endothelial cells, fibroblasts, and more
    “Did a study that merged NIH and CFI controls.

    “Split up <=3 years from >3 years:
    • Compared with patients with longer duration of ME/CFS (>3 years) IL4, IL10, IL13, and IL17A are increased and eotaxin is decreased in early ME/CFS
    • Allergic phenotype does not fully explain differences in cytokine levels in early vs late ME/CFS
    Plasma Cytokines in ME/CFS Patients and Controls Before and After a Cardiopulmonary Exercise Test

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    Ludovic Giloteaux

    Ludovic Giloteaux1, Betsy A. Keller2, and Maureen R. Hanson1

    1Cornell University, Dept. of Molecular Biology and Genetics, Ithaca NY, 2Ithaca College, Dept. of Exercise and Sport Sciences, Ithaca NY

    Searcher 09.59:

    “They have seen a difference in the gut biome from ME/CFS and controls (although that's not the focus of this presentation.) I will ask him later if I can reveal some of those results.

    “Exercise does not appear to exacerbate symptoms in most illnesses associated with fatigue or autoimmune disease.”

    “Immune dysregulation = major hypothesis for our symptoms

    “Did a CPET on study participants.

    “Controls could repeat their VO2 max on day 2, patients went down:
    • Il1-RA, IL-8, MCP-1 (CCL2) were significantly lower in CFS after one CPET
    • IL1-RA went down more on day 2 for CFS, and up in controls
    “Suggests immune dysregulation and potential immune suppression

    “Requires more studies to see if this can explain PEM

    Note: This conflicts with Stanford's findings on the CPET test. I hope to have more info this weekend on possible explanations for these differences...

    Natural Killer Cell Degranulation in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

    [​IMG]
    Sonya Marshall-Gradisnik

    Teilah K. Huth1,2, Ekua W. Brenu1,2, Kirsty Fuller1,2, Sharni L. Hardcastle1,2, Sam Johnston1,2, Donald R. Staines1,3, Sonya M. Marshall-Gradisnik1,2.

    1National Centre for Neuroimmunology and Emerging Diseases, Griffith Health Institute, Griffith University, Queensland, Australia.
    2School of Medical Science, Griffith University, Southport, Queensland, Australia.
    3Gold Coast Public Health Unit, Queensland Health, Queensland, Australia.

    Searcher 10.08:

    “Teilah Huth is speaking...

    “She is doing a similar walk-through as yesterday on how apoptosis is induced by Granzyme A, B, and perforin.

    “Granzyme B reduction in ME/CFS →reduced NK cytotoxic function.

    “I need to take a break but will be back soon. For now, suffice to say NK cell cytotoxic activity is reduced in ME/CFS patients compared to healthy controls. A reduction of Granzyme B appears to be key...

    Session: Virology Research

    Chair: Jose Montoya, M.D. Professor of Medicine, Stanford University Medical Center

    Chronic Pelvic Pain (CPP) in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is Associated with Chronic Enterovirus Infection of Ovarian Tubes

    [​IMG]
    John Chia

    John Chia, M.D., David Wang, Rabiha El-habbal and Andrew Chia, EV Med Research, Lomita California

    Searcher 11.30:

    “John Chia is presenting...

    “They have demonstrated EV protein in stomach, small intestines, and colons of ME/CFS patients with FD and IBD. He has also seen it in fallopian tubes. CPP is *not* a psychosomatic complaint.
    Q: Enterovirus infection causes pain (in CPP patients), what about treatment?


    A: The standard of care is a hysterectomy which does get rid of pain. We are hoping antivirals can help, but drug companies won't spend a million dollars on the research on antivirals.

    “He hasn't looked at oxymatrine, but doesn't think right now that it will work.

    Occurrence of Typical Clinical Symptoms and Markers of Human Parvovirus B19 Infection in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Santa Rasa1, Svetlana Chapenko1, Angelika Krumina2, Ludmila Viksna2, Modra Murovska1

    1August Kirchenstein Institute of Microbiology and Virology, Riga Stradinš University, Latvia

    2Department of Infectology and Dermatology, Riga Stradinš University, Latvia

    Searcher 11.45:

    Santa Rasa is presenting...

    “Parvovirus has been known to be associated with disease since 1981. It causes characteristic symptoms of ME/CFS, so is considered one of the possible triggers.

    “B19 is detected in 40% of patients, and less than 15% of donors so is definitely suspect, although some studies don’t show an association.

    “190 patients and 94 age and gender matched.

    “Presence of B19 NS1 gene sequence detected by nPCR. IgM and IgG detected by Elisa:
    • B19 antibodies in 85.2% of patients
    • 57% had IgG
    • Genomic sequence found in more patients than healthy individuals
    • 29.5% in ME/CFS patients and 6.4% of health patients
    “Their conclusion: Association of active B19 infection with some typical ME/CFS clinical symptoms shows possible B19 involvement in disease pathogenesis, but active infection cannot be ruled out.

    “She hasn't yet looked at sudden onset vs gradual onset.

    “They can't suggest IVIG for most patients, but it depends on the patient.

    “John Chia does treat patients who are DNA positive with IVIG, and insurance will pay for it. He only found 3/200 patients had it so he is surprised by how high their numbers were. It's potentially dependent on location. Dr Montoya will also treat IgM and PCR positive patients with IVIG, as they are the only patients who appear to respond.

    Pathogenesis of chronic enterovirus infection in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) –in vitro and in vivo studies of infected stomach tissues

    John Chia, M.D., Andrew Chia, David Wang, Rabiha El-Habbal. EV Med Research. Lomita, CA

    Searcher 11.56:

    “Dr Chia is speaking again, this time on EV in ME/CFS. I will write more about his presentation later...

    “It is primarily about EV in stomach biopsies of patients and controls, and mice tests. He is going through evidence of the link between EV and ME/CFS and is showing various slides that show evidence of infection.

    “Dr Chia's conclusion: “EV dsRNA plays a central role in the pathogenesis of chronic EV infection and ME/CFS, and should be targeted for antiviral therapy.”

    The Chronic Fatigue Initiative (CFI)- Findings from the CFI Cohort Study and Pathogen Discovery & Pathogenesis Project

    [​IMG]
    Nancy Klimas

    Non-CME symposium sponsored by the Chronic Fatigue Initiative

    Searcher 11.57:

    “Next up: CFI is going to announce some results. One of their members, Stella Lee, told me they are very excited about sharing their findings with the Phoenix Rising community, so I think I should have a lot to share...

    Searcher 12.30:

    “CFI was established in June 2010. They are looking at Epidemiology and mechanism of illness:
    • Virology- search for viruses and bacteria
    • Mitochondrial Dysfunction- defective energy production
    • Immune Dysregulation- abnormalities in immune response
    “The last two were based on their initial findings.

    Searcher 12.36:

    “Began virology study in Oct 2011

    “Initial tests showed no evidence of microbrial agents in plasma, and haven't yet studied white blood cells:
    • Elevated level of immune molecules in CFS patients ill for <3 years vs >3 years
    “Klimas:

    “They recruited 200 patients and controls in a year, usually that takes years.

    “What's key is that they are recruiting patients via true experts: Bateman, Peterson, Levine, Klimas, and Felsenstein...

    Searcher 12.37:

    [​IMG]
    “Biorepository includes:
    • serum,
    • plasma,
    • RNA extraction
    • urine,
    • tears,
    • saliva,
    • and rectal swabs
    “It's a well characterized cohort.

    Searcher 12.41:

    “Data overview: Estimated 4000+ variables

    “They purposely oversampled for acute samples because they were looking for pathogens.

    “Made sure at least 25% of the cohort was <3 years ill and also at least 25% were male.

    “These are a severely ill group of patients. The empiric data really reinforced the Canadian consensus definition the way the symptoms clustered:
    • 99%+ had PEM, because experts won't generally diagnose ME/CFS on someone without PEM
    “The cognitive dysfunction was as big a complaint as the fatigue complaints.

    Searcher 12.43:

    “The more acute the onset, the more inflammatory markers.

    “Shorter duration had more autonomic dysfunction.

    “Women were more severe on average.

    Searcher 12.55:

    [​IMG]
    Gail Ironson

    “Talk about subgroups from the statistical analysis (I will write this up as it requires more clarification on the statistic analysis and what the factors mean):

    Factors:

    Factors 1-3

    1. Fatigue​

    2. Neuroinflammatory​

    3. Gastrointestinal- 75% of the patients have thse symptoms​

    Factors 4-6:

    4. Fibromyalgia​

    5. POTS (more common in younger patients)​

    6. Hyperlidemia​

    Factors 7-9:

    7. Hypertensive​

    8. Fever​

    9. NMH​

    Additional Factors:

    10. Weight Change​

    11. Age/total cholesterol​

    12. Stressed: anxiety .745 and depressed .661 (she notes that this is very low in the factor list and likely to be a result, not cause of the illness)

    13. Unsteady/dizzy​

    14. Past Infection​

    15. Asthma​

    16. abnormal potassium​

    17. No evidence of past infection​

    18. Hypothyroid​

    “Next Steps:
    • Conduct latent class analysis on factors
    • “In addition to key indicators we will bringing other variables for a fuller picture of each profile (correlations with factor)”:
    • For example, cognitive dysfunction doesn't show up but is correlated with two different factors.
    Searcher 12.57:

    Two study aims are to identify factors that contribute to recovery and relapse and identify successful treatments with long-term benefits.

    Searcher 13.00:

    “Majority of the deceased samples from Nevada site (59.3%) - an artifact since these samples go back the furthest.

    Causes of death in sample:
    • Cancer (37.8%) (4x the background rate)
    • Health Disease (18.9%)
    • Suicide (18.9%)
    Searcher 13.03:

    “On average the patients were middle-aged, white, women, born in the US, and hihgly educated.

    “Mean duration since CFS diagnosis: 15.4+6.2 years

    “Demographics varied a lot per site. One variable was that the Nevada patients were older on average (again because of the history) and “Subjects in Utah sample had more children than average”

    “PEM severity and sudden onset were highly correlated

    Searcher 13.06:

    “Many comorbid and new diagnoses. Most common is fibromyalgia (61%).

    “30.4% reported at least one remission! Median duration of remission was 52 weeks.

    “Those with most severe initial symptoms were more likely to report improvement in health status over time.

    Searcher 13.18:

    [​IMG]
    Mady Hornig

    “Mady Hornig is looking for risk factors and potential biological triggers.

    “They found 2 cases with HHV6-B and 1 with parvovirus B19 (control) in 200+ samples which conflicts with earlier presentation on parvovirus

    Searcher 13.23:

    “Mady Hornig's slides:

    “Proinflammatory cytokines are increased in the plasma in early phase ME/CFS”

    “Plasma TH2/counter-regulatory cytokines are also increased in early phase ME/CFS”
    • IFNy and IL12p40 are markedly upregulated in early phase ME/CFS
    • Interferon gamma is quite significant with a p value of .001.
    “Increased IL17 [pro-inflammatory cytokine] and decreased GRO-alpha [a chemokine] are linked to cognitive impairment in ME/CFS”

    Searcher 13.28:

    “This is all really fantastic but I need to take a bit of a break. As Simon's recent article stated “Cognitive testing causes mental exhaustion lasting days.” But, more to come soon and CFI is eager to share with Phoenix Rising.”

    Searcher 13.34:

    “Conveniently that was the end. CFI plan a lot of future studies (including the microbiome: [note: see crowdfunding campaign launched March, 23, 2014 - more news to follow next week!) and want to extensively use the samples...

    Phoenix Rising and the California Conferences 2014:

    You can review all our previous coverage of these conferences, from Stanford through to IACFS/ME in San Francisco, in date order below:
    [​IMG]
    Stanford Symposium, Wednesday, March, 19, 2014: summary article (with added content): here or the original live blog: here.

    IACFS/ME Conference, Thursday, March, 20, 2014: summary article (with added content): here or the original live blog: here.

    IACFS/ME Conference, Friday, March, 21, 2014: summary article (with added content): original live blog: here.

    And don't forget to watch our feed on TWITTER for all of today's (and the previous day's) action.


    Session: Treatment Studies

    Chair: Daniel Peterson, M.D.

    Treatment of Orthostatic Intolerance (OI) Using Midodrine in Patients with Chronic Fatigue Syndrome (CFS); and Assessment Using Hours of Vertical Activity (HVA)

    Nicole Baldwin

    St. Olaf College, Northfield, MN, and *Lucinda Bateman MD, Fatigue Consultation Clinic, Salt Lake City, UT.

    Intervention Effect of Baduanjin Exercise on the Fatigue State in People with Fatigue-predominant Sub-health – A Cohort Study

    Wang Tian-fang1 Liao Yan1, Zhang Cong1, Zhang Yu1, Xue Xiao-lin1, Dai Jin-gang2, Lin Yin1

    1 School of Preclinical Medicine, Beijing University of Chinese Medicine, Beijing 100029; 2 China Academy of Chinese Medical Sciences)

    Effect of Isometric Yoga on Chronic Fatigue Syndrome: A Randomized Controlled Trial

    Takakazu Oka, Tokunari Tanahashi, Takeharu Chijiwa, Nobuyuki Sudo

    Graduate School of Medical Sciences, Kyushu University

    Home-Based Self-Management for Severe CFS/ME: A Randomized Trial

    Fred Friedberg, Ph.D.

    Session: Diagnosing CFS/ME; Difficult Clinical Cases

    Session Chair: Nancy Klimas, M.D. Immediate Past President, IACFS/ME

    Charles Lapp, M.D.

    Lucinda Bateman, M.D.

    Rosamund Vallings, MNZM, MB BS

    Daniel Peterson, M.D.

    Searcher 15.59:

    “There are a lot of poster presentations here for once or twice a day there is some time for attendees to look at the presentations and talk to the authors. We just ended one of those periods and started:

    Diagnosing and treating patients

    “Some of the top experts are discussing diagnosing ME/CFS and treating difficult cases. Drs. Klimas, Lapp, Bateman, Vallings, and Peterson are on the panel; each of the doctors are presenting complex cases in detail.

    “They are interacting a lot with the doctors in the audience to determine how they would diagnose patients - I would estimate 90% of the audience raised their hands when they were asked if they had prescription privileges.

    “Dr Lerner, Dr Chia, Dr Cheney(!), and many others are participating in the audience.

    “Dr Batemans and Dr Klimas mentioned they sometimes see EBV IgM positively persist over time, so it’s not only for acute cases. If Dr Peterson saw a patient with persistent positive EBV IgM he would do a PCR test.

    “One doctor has had luck with immunoglobulin replacement-level treatment. She has had luck with insurance companies and Medicare once you prove there is a deficiency. Other doctors have had trouble getting coverage once they get on an insurance black-list.

    Searcher 16.08:

    “Dr Lapp is treating a patient who has POTS that appears to be caused by MCAD. He used H1 and H2 receptor antagonists ("Zyrtec" and "Zantac") and topical beta blockers after the standard POTS treatments failed.

    “He wanted to note that not all POTS is neuropathic/high flow or hyperadregenic/low flow, you should look at Mast Cell Activation Disorder (MCAD). He has seen some patients get better just with OI treatments even though they have many CFS symptoms. This patient feels she is 90% better.

    “Dr Klimas said MCAS/MCAD is more common than people realize. You need to catch the blood in the faint/acute change. She mentioned that ketotifen is only available in Canada and can be helpful. H1 and H2 blockers are synergistic.

    Searcher 16.18:

    “One doctor said the majority of her male patients have low testosterone. Too much can cause weight gain, anger, and other symptoms so patients and doctors have to be careful to find a balance.

    Searcher 16.57:
    • Dr Peterson: “One thing I do is to try to keep [patients] out of urgent care or an emergency room. They always come out worse; I try to get them in to see me as soon as possible instead.”
    • Another doctor concurred and said going into the ER is often a trauma for patients.
    • Another well-known practioner said she tells patients not to mention fibromyalgia or chronic fatigue syndrome when they go into the ER because they could be treated so poorly.
    • Another says she tries to go in to meet the ER doctors to support her patients.
    Searcher 17.15:

    “Quick opinion piece:

    “It has been great to watch many of the top ME/CFS clinicians interacting in this session. Many have different perspectives on etiology and treatment, but they generally seem really open to others’ perspective. Whatever perspective the specialists look at CFS from--infectious disease, immunology, hormones, mitochondria/methylation, or another focus - they want to understand the various treatment options. I wish more patients had access to the specialists since they are light-years ahead of general doctors. Obviously that will require more doctors without a psychiatric bias to take a risk and enter this field, and for insurance and countries with national health care to cover more so everyone can afford to see them.”


    Searcher 17.26:

    Conclusion:

    Klimas asked the audience and panel what top supplements they use:

    “Some answers include:
    • Coenzyme-Q (worked in a study in gulf war, only taken in the morning since it can impact sleep)
    • Methyl-B12 shots (several said it helps patients a lot)
    • Some use hydroxy-B12 for patients with amalgams or for those who can’t tolerate methyl-b12. Dr Cheney prefers hydroxy-B12 because he says it works as a detoxifying agent.
    • Magnesium — many prefer sublingual, dermal, or injectables since patients have trouble keeping it
    • Carnitine
    • “make sure people eat” since many patients have to wait for others to make meals
    • Inosine or immunovir (Klimas goes for 5 days a week so uric acid doesn’t go too high; it sounded like Cheney didn't take breaks but I am not certain)
    • Most support Vitamin D
    • Omega 3
    • NAC
    • Glutathione (both oral and injectable)
    Searcher 17.27:

    “End of the day. Thanks for the support all! I will try to get some more answers out of researchers that our milling around.”

    Searcher 18.14:

    “I want to apologize in advance, but I think there is a decent chance I will miss tomorrow morning since I need to recover a bit in bed. There are some interesting discussions going on first thing in the morning and hopefully one of the other patients will get there early to take notes, and I will get those compiled whenever possible.”

    The End of Day 2 of the IACFS/ME Conference from San Francisco.


    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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  2. Valerie Eliot Smith

    Valerie Eliot Smith

    Messages:
    3
    Likes:
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    London, UK
    Searcher - you're an absolute star! Thank you so much.
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  3. Wally

    Wally Senior Member

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    @searcher - It was great getting to meet you at the Conference. I am in complete awe of what you were able to accomplish by collecting so much of the information disseminated at these meetings. I watched as you (and a few others) were typing away at each meeting and were still at it right up to the closing remarks for the conference yesterday.

    I am sure that your efforts will be appreciated by many people around the world. I hope that in the future you and some of the young "tech savvy" generation of ME/CFS patients will continue to have opportunities to actively participate in the ME/CFS patient community (we need to hear your voices). It is so uplifting to see the next generation of ME/CFS patients be so willing to engage in a variety of activities to get information about this illness out to patients and the public.

    Wishing you a much needed quiet and peaceful rest while you try to recover from all of the work you have done.

    Wally
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  4. searcher

    searcher

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    SF Bay Area
    Thank you so much @Wally! It was an honor to meet you and I can't thank you enough for all you have done to help this community. I meant to try to get a photo taken with you but did a horrible job on the photo front, so we will just have to meet again one day at a protest. :)
    Last edited: Mar 31, 2014
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  5. beaverfury

    beaverfury beaverfury

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    West Australia
    Thank you, searcher :) Lot's of good stuff
  6. Simon

    Simon

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    Monmouth, UK
    Huge thanks @searcher for the excellent reporting and also to @Firestormm for the clear formatting and additional helpful info/links.

    I can't believe how much there is here! I was particularly interested in the work emerging from CFI (Chronic Fatigue Initiative), which I'll highlight here - edit of @searcher's notes above.

    Really impressive CFI cohort:
    Recruited 200 patients and controls in a year, usually that takes years. “What's key is that they are recruiting patients via true experts: Bateman, Peterson, Levine, Klimas, and Felsenstein...

    “They purposely oversampled for acute samples because they were looking for pathogens. “Made sure at least 25% of the cohort was <3 years ill and also at least 25% were male.

    Biorepository includes:
    • serum
    • plasma,
    • RNA extraction
    • urine,
    • tears,
    • saliva,
    • rectal swabs

    Data overview: Estimated 4000+ variables (inc blood tests and symptoms)
    • These are a severely ill group of patients.
    • 99%+ had PEM, because experts won't generally diagnose ME/CFS on someone without PEM
    • The cognitive dysfunction was as big a complaint as the fatigue complaints.
    "The empiric data really reinforced the Canadian consensus definition the way the symptoms clustered"
    I would love to see more about this, which I think is a very important finding. This kind of evidence is exactly what's needed to demonstrate that these (or any other) consensus criteria are validated by hard data on patients. I'm glad it's been done and will try to find out more.
    Results
    [I skipped over the factor analysis and mortality results as I didn't really grasp them]

    Pathogen/immune began study in Oct 2011:

    “Initial tests showed no evidence of microbrial agents in plasma, and haven't yet studied white blood cells:

    Immune findings
    • Elevated level of immune molecules in CFS patients ill for <3 years vs >3 years
    • The more acute the onset, the more inflammatory markers.
    • Shorter duration had more autonomic dysfunction.
    Cytokines/Mady Hornig's slides:
    • “Proinflammatory cytokines are increased in the plasma in early phase ME/CFS”
    • “Plasma TH2/counter-regulatory cytokines are also increased in early phase ME/CFS”
    • IFNy and IL12p40 are markedly upregulated in early phase ME/CFS
    • Interferon gamma is quite significant with a p value of .001.
    • “Increased IL17 [pro-inflammatory cytokine] and decreased GRO-alpha [a chemokine] are linked to cognitive impairment in ME/CFS”

    CFI plan a lot of future studies (including the microbiome: [see crowdfunding campaign launch]) and want to extensively use the samples...
    Last edited: Mar 29, 2014
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  7. searcher

    searcher

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    One thing I don't think I got down was that the CFI epidemiology study consisted of 1430 long-term patients (5+ years), which is impressive since those are all patients diagnosed by experts. 16% of the patients reported cancer malignancies, which is four times higher than the prevalence in the US.

    I also thought "Increased IL17 [pro-inflammatory cytokine] and decreased GRO-alpha [a chemokine] are linked to cognitive impairment in ME/CFS” was really interesting. If only GRO Alpha+IL-17+PET scans+qEEG were used in clinical practice, we could stop trying to describe brain fog to skeptical doctors and instead could just show them the evidence.

    I will be writing up more on the findings from CFI soon.
    Last edited: Mar 29, 2014
  8. Gamboa

    Gamboa Senior Member

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    Great work Searcher. It will take me some time to read this again, process it, check my notes and add any comments ( I have really bad brain fog right now and can barely understand anything you wrote).

    I remember what stood out to me at the end of the 2 sessions given by Dr. Chia was that someone asked if anyone was following up on what he was doing and the answer was a shocking "no". He apparently first had a paper linking enterovirsuses in the tissues and ME/CFS back in 2007 and so far no one else, besides himself, has done any more research on it. I think I recall someone saying that even Dr. Lipkin was not aware of it?? which sounds really odd.
    Apparently since antiviral medicines don't work in GI tissues, pharm. companies aren't interested in doing research.

    Someone asked him does he think the enterovirus is causing the disease and he says it is the "chicken and egg" situation. It could be there because of ME/CFS, not causing ME/CFS.
    Someone also asked if he had tested for it in the brain or heart and he said no since there was no since you can't really do brain biopsies on people.

    When asked if he had found it in the lungs he said yes and gave an example of a patient with a severe lung problem that doctors had said was psychosomatic. He did a lung biopsy and found enterovirus infection. It is so small that it would not show up on a CAT scan. He said this could possibly affect respiration and an exercise test.
    Last edited by a moderator: Mar 31, 2014
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  9. Gamboa

    Gamboa Senior Member

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    Another interesting, although a bit distressing, study from the morning sessions was that of Dr. Mangalathu S. Rajeevan, who did a genome -wide analysis of differential methylation in ME/CFS patients. Differential methylation was found in 205 genes at 1101 sites. Of these, only 17 genes showed differential expression in whole blood and of these 17, only 1 showed a significant correlation between expression and methylation.

    It was the TERT gene, the telomerase reverse transcriptase gene and codes for telomere length. In ME/CFS patients it is not expressed as much, leading to shorter telomere length. The bad news is that telomere length is directly correlated with lifespan of a cell. The shorter the telomere in a cell, the shorter the life span of that cell. TERT is associated with aging, so there is now a question of accelerated aging and life span in people with ME/CFS.

    A few questions at the end were directed towards the question of what does it mean and basically the answer was " it needs more study" and the further "validation studies need to be done".

    Lets hope this was a bad study with a false result!
    Last edited by a moderator: Mar 31, 2014
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  10. searcher

    searcher

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    Thanks for adding these notes @Gamboa ! It was great meeting you at the conference.

    It is incredibly frustrating that no one appears to be trying to replicate Dr Chia's work.

    I missed Dr. Rajeevan's presentation but heard Dr Komaroff refer to our telomere length in his conference summary. It is disconcerting and, as always, I wish more studies were being done.
    Last edited: Apr 1, 2014
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