Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Jan 15: 9am PST/noon EST/5pm UK: Webinar by Dr David Patrick (UBC Complex Chronic Disease Study)

Discussion in 'General ME/CFS News' started by Dolphin, Jan 15, 2016.

  1. Dolphin

    Dolphin Senior Member

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    (Starts in less than one hour)


    <http://spph.ubc.ca/seminar-series/grand-rounds/details/>


     
    L'engle, Woolie, A.B. and 7 others like this.
  2. Sasha

    Sasha Fine, thank you

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    OK, so I expect I missed that - was it any good? Going on YouTube?
     
  3. A.B.

    A.B. Senior Member

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    I watched it and it was interesting. Dr Patrick talked about an ongoing study comparing CFS, alternatively diagnosed lyme disease, and systemic lupus. At some point a slide was shown where CFS patient antibodies formed several clusters in a specific test. It was complicated and I didn't understand much but there are patterns. Dr Patrick then mentioned the Rituximab research and said they have acquired samples from Fluge and Mella to repeat the test with.

    It was also good to hear that CFS has attracted the attention of the US government due to the economic burden and the number of patients (paraphrasing). So at least some people higher up realise there's a big problem that needs to be confronted.
     
    Last edited: Jan 15, 2016
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  4. A.B.

    A.B. Senior Member

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    Also he described 2 day CPET testing, with blood samples taken on the first two days and then two more samples taken on the following days (I think day 4 and 7 or something)
     
    L'engle, Valentijn, helen1 and 3 others like this.
  5. helen1

    helen1 Senior Member

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    Wondering if any canadians on PR have consulted with Dr Patrick and what their experiences were?
     
    L'engle likes this.
  6. Gemini

    Gemini Senior Member

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    Interesting introduction to new technologies--metagenomics, immunosignatures, etc. applied to a small sample of 25 ME/CFS patients, healthy controls, a Lupus cohort, and alternative Lyme patients.

    Canadian researchers collaborating with others worldwide, ie, Fluge/Mella in Norway, Arizona State Univ. among others and acknowledging the Lipkin/Horning work was heartening to hear.

    Appreciate your posting it @Dolphin.

    Would like to view it again, lots of detail there, so hope it goes up on You Tube.
     
    L'engle, Woolie, helen1 and 1 other person like this.
  7. Gemini

    Gemini Senior Member

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    Thanks @A.B. for summarizing the talk. My notes are sketchy I'm afraid.

    Dr. Patrick referred to published papers. Wonder if he meant these from 2015?

    www.ncbi.nlm.nih.gov/pubmed/26082507/

    I believe he said their testing-- of blood-- revealed no differences between patients & controls regards viruses, bacteria, & cytokines. And he'd like to expand testing to hair, nails, stabilized RNA and stool in the future.

    I agree their 2-day exercise test Transcriptomics Study sounds very interesting. Am anxious to hear its results. Perhaps it builds on this work:

    www.ncbi.nlm.nih.gov/pubmed/25990639/

    I liked the way Dr. Patrick listed the new technologies first noting their strengths & weaknesses.He alluded to several points made in this 2013 paper

    www.ncbi.nlm.nih.gov/pubmed/24273702/

    Dr. Patrick did an excellent job presenting a review & status of their ME/CFS research projects.
     
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  8. Kati

    Kati Patient in training

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    can you please say more?
     
    ScottTriGuy likes this.
  9. lansbergen

    lansbergen Senior Member

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    Can you post that slide?
     
  10. A.B.

    A.B. Senior Member

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    Ask Dr Patrick for the slides. If you send an email saying that the phoenixrising ME/CFS community is interested I'm pretty sure you'll get them.
     
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  11. Gemini

    Gemini Senior Member

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    I remember one color slide showing the clear pattern from the Lupus cohort with ME/CFS's pattern also presented (wonder if we're thinking about the same slide?)

    I'd really like to see all of them again, @A.B. like your idea of PR asking Dr. Patrick for a copy.

    Dr. Patrick's presentation was extremely hopeful-- they seem to be letting the data lead the science. A good way to start off the new year!
     
    Woolie likes this.
  12. L'engle

    L'engle moogle

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    That's exciting!!!
     

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