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California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 26, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the conference with a terrific summary from Dr. Antony Komaroff...

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    The 11th biennial IACFS/ME conference is being held in San Francisco.
    Day Four, the finale, March 23, 2014.

    A very warm welcome to our final review from Day Four (March, 23, 2014), of the IACFS/ME four-day conference. It has been a marathon series of presentations and a real team effort to keep up the momentum.

    Our hats are well and truly raised to Searcher who took up the gauntlet and did an incredible job relaying all the news she was able to from the conference floor.

    Our thanks also to those other patients who accomplished similar feats of endurance to help ensure our commentary was as good as it could possibly be, and that the messages of hope reached as wide an audience as possible in our global community.

    We are greatly indebted to the many clinicians and researchers who managed to take part in these conferences, and to all those engaged with our healthcare needs and who are able to find the resources to search for answers and come up with solutions.

    Never before has an ME/CFS conference of this sort been attended by so many and over so many days. The sheer number and depth of presentations and quantity of science posters were as inspiring as the number of professionals in attendance (not forgetting the numbers of patients who made it and were willing to pay the cost to their health).

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    We hope that over coming weeks (and months), we can analyze our recordings and notes, and reach out to the clinicians and researchers involved for follow-up interviews: and then we can deliver some explanatory, as well as in-depth, articles on things that most caught our interest as well as your own. So do let us know if there was anything you'd especially like to hear more about - and we'll see if we can accommodate your request.

    Note: as ever, do 'click' the pictures to open the links for profile information where available.

    Sunday, March 23rd

    Session: Advances in Brain Research

    Chaired by: Simcox-Clifford-Higby Professor of Medicine, Harvard Medical School

    Neuroscience of Fatigue and CFS/ME by Using PET Molecular Imaging and Functional Neuroimaging

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    Dr. Yasuyoshi Watanabe

    Yasuyoshi Watanabe1,2, Masaski Tanaka1,2, Kei Mizuno1,2, Akira Ishii1,2, Emi Yamano1,2, Sanae Fukuda1-3, Yasuhito Nakatomi1-3, Kouzi Yamaguti3,4, and Hirohiko Kuratsune2-4

    1RIKEN Center for Life Science Technologies, Kobe, Japan, 2Dept. of Physiology, 3Fatigue Clinical Center, Osaka City Univ. Graduate School of Medicine, 4Dept. of Health Science, Kansai Univ. of Welfare Sciences, Osaka, Japan.

    Searcher 10.52:

    “Hypothesis: Neural and molecular mechanisms leading to chronic fatigue

    “Serotonergic system: Existing research:

    1. Indication of endocrine abnormality induced by dysfunction of 5-HT system in CFS​

    2. 5-HT transporter gene polyphormism in CFS patients​

    3. Dysfunction in 5-HT system in the animal models​

    4. One third of the CFS patients responded to SSRI (research in Japan)​

    “Reduced binding potential of 5-HTT in CFS patients.

    “BP in the dorsal subdivision of anterior cingulate cortex (Brodmann's area 24) was negatively correlated with the pain score

    “He is comparing CFS with what he considers related "functional somatic syndromes" such as "functional dyspepsia"

    “They did a PET study on neuroinflammation in CFS Patients. This will be published in May.

    Searcher 10.59:

    “Using PET in CFS patients they found a negative correlation between pain and 5-HT and in the attention center, lower uptake of acyl-L-carnitine and lower density of 5-HT transporter.

    “There is neuroinflammation → extra activation of microglia (which I believe reflects Jarred Younger's findings)

    “From HST "Brain Science and Education" program (2005-2010):
    • Fatigue and motivation are negatively correlated
    • Identification of the risk factors related to the motivational loss by 2-year cohort study:
    • “Sleep time. Habit of breakfast. Praise by families and others.” (Editorial comment: I am not making this up!)
    EEG Peak Alpha Frequency is Associated with Chronic Fatigue Syndrome: A Case-Control Observational Study

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    Drs. Marcie and Mark Zinn at the conference.
    Photo courtesy of searcher.

    Marcie Zinn, Ph.D., Mark Zinn, MM, Jose Maldonado, MD, FAPM, Jane Norris, PA-C, Ian Valencia, BS

    Searcher 11.09:

    “A lot of this will be a duplicate from Stanford...

    “Objectives: “Determine whether there is an EEG correlate for fatigue and "brain fog” among patients with CFS

    “50 CFS-patients diagnosed by Dr Montoya, 50 controls

    “They used qEEG (19 channels; international 10/20 system)

    “Peak alpha is looking for the tallest peak in the waves and looking for the frequency at which these peaks are tallest. As mentioned from Stanford:

    “...there was a significantly deceased PAF over 58% of cortex of CFS patients.”

    “...a reduction in PAF activation, this widespread in the absence of cerebral lesion or brain injury, usually suggest a dysregulation of thalamo-cortical circuits.”

    “PAF predicted MFI-20 fatigue with a huge R-squared of .9

    “Implications of reduced PAF in bilateral frontal, parietal and central areas:

    “Associated with interruptions in goal-directed behavior...”

    “Parallels mental status consistent with dysexecutive symptoms (cognitive processing)...”

    “She mentioned again that she has CFS and so can confirm these symptoms...

    Searcher 11.14:

    [​IMG]
    “I need to check out the break room again. Will be back soon.”

    Cognitive Functioning in Chronic Fatigue Syndrome

    Susan J. Cockshell, Jane L. Mathias, The University of Adelaide, Australia

    Searcher 11.40:

    “Cognitive tests did not match self-reported problems in either controls or patients

    “After cognitive testing controls took 7 hours to go back to baseline. Patients took 57 hours on average and the longest was 7 days

    Note: For more from Susan Cockshell, read Simon's article: Cognitive testing causes mental exhaustion lasting days. Published at the start of conference week!

    “Cognitive Q and A going on right now with the panel...

    “One Q&A I wanted to share:

    Q: paraphrased question to Marcie Zinn: “Can you use EEG as a diagnostic and is the EEG similar to other diseases?”

    A: “You can't use EEG for any diagnostics. EEG can't even be used for epilepsy. You need to know something about the patient to do the analysis.” But, and as mentioned before, it could help confirm a diagnosis.​

    Session: IACFS/ME Clinical Practice Manual: The 2014 Revised Primer

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    Dr. Fred Friedberg at the conference.
    Photo courtesy of Searcher.

    Guidelines Panel Chair: Fred Friedberg, Ph.D.

    Panel: Lucinda Bateman, M.D., Kenneth Friedman, Ph.D., Leonard Jason, Ph.D., Charles Lapp, M.D., Lucinda Bateman, M.D., Staci Stevens, M.A., Rosamund Vallings, M.B., B.S.

    Searcher 13.32:

    “There have been over 17000 views of the primer online

    “The online 2012 version of the IACFS/ME Primer is available: HERE

    Kenneth Friedman...

    “It was written in 2012 and is being revised in 2014. This was an opportunity to include new information. It is a true international consensus document.

    “Arrangements have been made to translate the Revised Primer into French
    • The translation will occur in Canada
    • The accuracy of the translation will be checked in French
    “As with the original Primer, the intent is for the Revised Primer to be freely available.”

    “The intent is to create a living document

    [​IMG]
    Drs. Nancy Klimas and Lily Chu at the conference.
    Photo courtesy of Searcher.

    Searcher 13.50:

    “There is debate now on whether ME can cause death:

    - It is a difficult debate and most of the researchers and clinicians agree that we need more information before we can say either way

    - They are speaking about Sophia Mizra and other cases

    - Dr. Lily Chu gave a moving objection to the claim that ME/CFS cannot cause death

    “How can we encourage doctors to read the primer and will it be on the National Guideline clearinghouse?” For part 2 they don't have control over whether it can get on there, unfortunately.

    “Thoughts on part 1:

    - One doctor said she thought people should bring the Primer to doctors' appointments and make sure to show them the section most relevant to their issue

    - Another doctor said he received a lot of material, and sometimes it takes a couple of years before he reads material but the most important thing is to get it on doctors' shelves

    - “I like the last comment they read out. It simply said, “PUT IT ON AMAZON!”” :)

    Summary of the Conference

    Anthony L. Komaroff, M.D.

    Searcher 16.31:

    [​IMG]
    Dr. Anthony Komaroff at the conference.
    Photo courtesy of searcher.

    “Dr Komaroff gave an excellent summary of the conference at the end of the day, focused on what he thought the highlights of the four days are. It sounds like it is a tradition for him to summarize the highlights of the meetings since he seems to be really good at it.

    “I am going to share my rough notes first, and once I recover from the experience I will edit it to add any details I missed...

    “One of the highlights to Dr Komaroff was the huge new CFS databases and Biosample banks:
    • Nova Southeastern University/University Miami
    • Stanford
    • Chronic Fatigue Initiative (CFI) (multicenter)
    • NIH Multicenter study: Columbia University (multicenter)
    • U.K. ME/CFS Biobank at University College London/Royal Free Hospital
    Searcher 16.33:

    Immunology Overview/Highlights

    Elevated levels of allergy-associated cytokines and chemokines and other pro-inflammatory cytokines in patients ill for <3 vs those ill >3 years: CFI study

    Ability of multiple inflammation-associated molecules to distinguish CFS cases from health controls: Stanford studies

    Stanford inflammation studies:
    • 197 CFS cases vs 394 age/sex-matched controls
    • Levels of 51 inflammation-related molecules were measured
    • 15 either distinguished cases from controls, or correlated with symptom severity, or both
    “Dr Komaroff thinks a study of that scope is likely unprecedented in the CFS world and even other illnesses!
    • The correlation of inflammation-related molecule levels with illness severity was basically linear which doesn’t prove there is a cause but shows an association.
    “The Younger study shows a close tie with leptin and the levels of fatigue, and he thinks it’s a, “novel insight, the meaning of which many groups will be pursuing.”
    • Elevated levels of IL-17: strongly associated with autoimmunity
    • Significant decrease n several miRNAs (miR-146a, miR-106b, miR-191, miR-223) would increase production of pro-inflammatory molecules
    • Elevated levels of interferon-gamma (IFN-y).
    “In the CFI study interferon-gamma were much higher in cases that were ill <3 years. This had a very high odds ratio; it was one of the strongest odds ratio he has seen implying there is a very close association.

    “The correlation of interferon-gamma with cognitive impairment was also very strong. It implies that there could be an infectious agent.

    “The telomeres, the ends of chromosomes, are shorter in patients with CFS than in matched healthy control subjects:
    • Telomere length is a marker for cellular aging: shorter telomeres denote cells aging more rapidly
    • Shorter telomeres also predict an increased vulnerability to a variety of “diseases of aging”.
    • One demonstrated association with shorter telomeres is perceived stress
    Highlights in Virology/Infectious Agents

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    Dr. Mady Hornig at the conference.
    Photo courtesy of Searcher.

    Chronic Fatigue Initiative study:
    • Essentially no microorganisms identified in serum
    • Question: What about in circulating, white cells, brain or other tissues?
    • Answer: This needs further study
    Enteroviruses: Dr John Chia:
    • Reported increased Enteroviral AG (VP1) and Enteroviral dsRNA in the stomach biopsies of CFS patients compared with controls
    • SCID mice injected with VP1+ gastric tissue develop evidence of virus in spleen and other organs...
    • Dr Komaroff found the results impressive and thinks it’s very disappointing that no enteroviral experts are looking into this.
    Phoenix Rising and the California Conferences 2014:

    You can review our completed coverage of these conferences, from Stanford through to IACFS/ME in San Francisco, in date order below:

    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 and the original live blog: here.

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

    IACFS/ME Conference, Saturday, March 22, 2014: summary article (with added content): HERE and the original live blog: here.

    IACFS/ME Conference, Sunday, March 23, 2014: summary article (with added content): is this article, and the original live blog: here.


    Highlights in Public Health/Epidemiology

    “Canadian study estimates that 411,500 of 35M Canadians (1.1%) have CFS

    “Chronic Fatigue Initiative study found that 1/3 of patients had at experiences at least one remission, and the median length was one year.

    Case Definition

    Case definitions need to be precise to be useful:

    - How do you define that symptom?

    - How severe does the symptom need to be to “check the box”?

    Empirically-derived case definitions are superior to consensus-derived case definitions:

    - Better at defining subgroups, especially using statistical techniques

    - Better at predicting an endpoint:

    - e.g. “prognosis or a laboratory finding that's thought to define the pathology of the illness”​

    Highlights in Exercise “Provocation” Studies

    “If patients tell you that a particular stressor makes them feel worse, then the time to study them is when they have been exposed to that stressor and feel worse:
    • Though CFS patients don’t consistently perform below normal on one exercise study, 95% of patients have an abnormal VO2Max when they are exercised 24 hours later again.
    • Same finding for pulmonary ventilation
    • This degradation is not seen in healthy controls nor in heart/lung patients
    • Low Peak oxygen extraction relative to increase in cardiac output, which implies a metabolic defect (possibly a downregulation of carbohydrate metabolism).
    Highlights in Pediatric CFS

    [​IMG]
    Dr. Jarred Younger at the conference.
    Photo courtesy of Searcher.

    • Surprisingly high prevalence of delayed milk protein sensitivity in CFS that cause symptoms
    • Depression was found only in 25% of patients, even after onset of CFS
    • Some lab tests appear to show which patients with mono will go onto post-mono CFS
    Highlights in Brain Research

    “Stanford qEEG studies: Remarkable ability to distinguish CFS patients from healthy controls

    “Osaka and Kobe Japan studies show activation of microglia and astrocytes using PET scanning

    “qEEG:
    • PAF reduction and increase in delta wave frequency are increased, particularly in frontal and limbic areas.
    • highly correlated with degree of fatigue as assessed by 2 fatigue instruments
    • Likely disruption of information transfer across cortical networks and inhibition of ascending arousal systems
    “Past Osaka/Kobe Japan PET scan studies:
    • Reduced cortical blood flow
    • Reduced glutamate
    • Reduced serotonin transporter
    • Increased dopamine biosynthesis
    “Neuroinflammation by PET Scan:
    • IV injection of a compound that binds to a translocator protein in microglial cells and astrocytes
    • 9 CFS patients and 10 healthy controls
    • Increased signal in multiple areas of the brain: cingulate cortex, hippocampus, amygdala, thalamus, mid-brain, and pons
    • Intensity of the signal correlated with cognitive impairment
    Dr. Komaroff's Final Summary

    [​IMG]
    Dr. Anthony Komaroff

    - Brain and Autonomic Nervous System

    - Immune System

    - Energy metabolism

    - Oxidative and nitrosative stress

    “The illness is not simply the expression of somatic symptoms by people with a primary psychological disorder.”

    - It was a fair question 30 years ago to ask whether it was imagined, but today it is no longer a fair question.

    Searcher 16.42:

    “At some point the slides (much of which I typed up here, but certainly not all) will be on the CFIDS Association of America website synced up with his voice.

    Fancy writing about a conference presentation yourself?

    If you like the idea of seeing your own article published (something that focuses specifically on an aspect from any of the conferences that you most enjoyed or were intrigued by, or if you want to write an article that reveals your own impression of the conferences if you'd been able to attend), then do please let me know through the forums (Firestormm), or drop me an email, with a brief outline of what you would like to write about and how you intend to source the information.

    The End of our immediate coverage of the 2014 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.

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    ahimsa, LaPerla, peggy-sue and 2 others like this.
  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    Thanks folks!

    It's interesting to see some of the same professionals that I first saw at conferences back in the 1980s. We must be habit-forming, huh?
    aimossy and NK17 like this.
  3. NK17

    NK17 Senior Member

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    Thanks for reporting this cornucopia/bonanza of informations.
    I have to agree with @Roy that we must be habit forming for several of these professionals to come back, or maybe is just one very painful case of how medicine reacts slowly to a serious and important medical issue that has impacted and continues to impact millions of lives around the world.
    We have every right to keep these professionals engaged and bring new young ones to the shore of ME/CFS research and translational MEdicine.
    The tiME is now!!!
    LaPerla likes this.
  4. Gamboa

    Gamboa Senior Member

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    Excellent Searcher. Thank you so much.
    Firestormm likes this.
  5. Firestormm

    Firestormm Guest

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    Please note:

    The YouTube version of Dr Komaroff's summary (his words linked to his slides) have now been added to the main Home Page version of this article.

    Or you might like to listen/watch it here:



    With thanks to CFIDS Association of America for linking the slides to our recording :)
    aimossy likes this.
  6. Firestormm

    Firestormm Guest

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    Here is Dr Lucinda Bateman giving her thoughts about the conference at a meeting of OFFER on April 2, 2014:

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