Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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NIH CFS conferance on today

Discussion in 'General ME/CFS News' started by taniaaust1, Apr 7, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    For anyone wanting to watch it.. it is live at http://www.videocast.nih.gov/ (right now they are having a break). Download the real player if you cant get it.

    some notes taken on this conference so far (coming from various ones in the chat)

    Dr Komaroff? said 29% of patients are "shut-in"
    21% unable to work at all
    he is talking about sudden onset being very prominent, compared to vague fatigue
    comparing cfs to ms
    concentration, myalgias and disrupted sleep
    comparing symptoms with major depression
    less than 47% diagnosed with depression EVER in life other mental conditions even less
    Dr Komaroff: Why is not just depression? because in our experience it's just not.
    abnormal labs -- commonly obtained tests DID distinguish CFS from others. NOT a subjective experience more details on that later, Komaroff says
    CNS, dysregulated cytokines, triggered by & possibly perpetuated by infection (latter not all cases, he doesn't think). he says infection is not necessarily a perpetuating factor in all patients
    He's taking questions.. Suzanne Vernon asked one. She is sitting next to Dr. Lucinda Bateman
    comorbidities
    Komaroff: over and under diagnosis in community -- falling out with one or more DR's before patients see him
    difficulty of DR's who know very well that they cannot help the patients -- their own emotional response -- and can they try to at least give symptom relief
    .................
    New speaker: Leonard Jason on diagnostic criteria and case definitions "ambiguities with case definition" a problem. Case definition as the foundation of a house of cards
    He is a good speaker.
    he is giving history and overview of historical definitions
    Ramsay criteria: illness NOT unexplained
    (this was ME definition)
    there is a bar graph on screen with symptoms by healthy person - a few low, and CFS person: all symptoms and high
    now talking about problems with identifying PEM - depending on how the question is asked
    Dr Jason is telling it as it is with CDC/Reeves criteria :) He is talking about how you can overdiagnose by factor of 10 using CDC criteria
    he is talking about distinguishing depression from CFS
    question and answer time with Dr Jason
    Dr Klimas says that all these years, still talking about case definition is frustrating :)
    some question/answer on lymph nodes - something about a study never been done
    A guy from some brain journal invited them to submit an article.
    they were talking about rates of certain cancers but they said there is not enough data and robust studies with more samples need to be done
    Now there is a question about subgroups.
    I think they talked about lymphomas or B-cells, again, it went too fast
    .........
    New speaker
    Harvey Atler?
    He's talking about possible infectious agents. that initiate post-viral symptoms
    emphasis on discussion rather than seminars -- this is excellent! Catherine Loughlin -- wonderful
    ...........
    Ronald Glaser, Ph.D., The Ohio State University speaking. EBV virologist, interested in latency. Talking about EBV.
    Talking about XMRV maybe a contaminant.
    EBV and HHV6 are associated with CFS and you can't ignore it.
    Social relationships are a risk factor for health.
    Stress co-factor for CFS but not controlled for in many studies. Cortisol reactivates latest EBV and other herpesviruses.
    Measuring stress
    He was talking about about titres of EBV in stress caused by students taking exams.
    and that depressed people had higher titers
    he will study naked viral proteins :)
    talking about reactivation of EBV
    "we've been looking in the wrong place"
    all I'm getting is that now he has questions and theories...
    "abortive reaction of latency"
    talking about Lerner's study
    "Possibility of endogenous retrovirus in this"
    EBV and Herv-K could interact (one of his theories)
    talking about EBV acting with retrovirus
    lukewarm applause
    someone asked about Burkitt's lymphoma
    viral protein could be stimulated B cells (he's talking so fast)
    .........
    Dr John Chia being introduced. Dr. Chia's son had ME/CFS which prompted his research. He's going to talk about pathogenic role of enterovirus polio, etc.
    HEV are VERY common...more than common cold... but some are severe. They can grow in the stomach and come up the vagus nerve and lead to brain stem infection in 3 days.
    viral RNA persists in chronic infection...double stranded RNA in cells
    persistent enteroviral infection in cfs
    no difference between muscular dystrophy and ME/CFS patients when doing muscle biopsies
    "metabolic myopathy"
    Enterovirus RNA in ME patient autopsy
    Me patient biopsy of brain on heart muscles and brain - entro in heart, brain steam muscles
    RNA is involved in transcription (copying DNA); I think here it's evidence of retroviral activity (?). Retroviruses package their own RNA
    35 per cent of hundreds of patients over six years were positive for enterovirus
    20 of sickest patients returned postive samples for entrovirus 70% of time
    bedridden
    Virus is probably in tissue (low copies in blood). Colon biopsies - million of viral copies. More commonly found in tissues, and entero are swallowed and so most commonly found in stomach so went looking for it there
    took tissue samples and stained to pick up entero from stomach biopsy.
    82 per cent of patients were positive...statistically significant
    53 percent had extensive staining enterovirus
    82% of his samples have tested postive
    viral load in tissues correlate with illness severity. Positive staining of tissues for entero correlated to high levels of physical disability
    (in question and answer time)
    coffin bringing up genetic diversity....
    varying anti-body titers? (question)
    "It has to be the meat. It has to be the tissue" - Chia's closing remarks.
    he knocked on the head, that the idea of entero viruses have to be in the spinal fluid, and he said no that is not true
    have u ever looked at the CSF? chia--We.....have not"
    ....

    (im off to bed..so if anyone else wants to take some notes for those who cant watch it to read so we know something about it, while waiting for some proper transcripts to be done, i suppose they will be some time.. it would be great).
     
  2. Dolphin

    Dolphin Senior Member

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    That's great, taniaaust1. Thanks.

    If anyone else has notes, please post them.
    I very rarely watch videos - too much stimulation and I want to keep making notes which is tiring.
     
  3. camas

    camas Senior Member

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    Thanks for your notes, taniaaust1. Sounds like the morning session was quite eventful!
     

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