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Solve webinar 17 March: Dr Susan Levine - “The Future of ME/CFS”

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Mar 5, 2016.

  1. Sasha

    Sasha Fine, thank you

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    https://www.facebook.com/SolveMECFSInitiative/posts/10153445609352108

    https://attendee.gotowebinar.com/re...l&utm_source=facebook.com&utm_campaign=buffer

     
    Jennifer J, catly, Comet and 7 others like this.
  2. Sasha

    Sasha Fine, thank you

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    A little bump for this to remind people that when they register, they get to send an email with a question for the speaker, if they want - so worth registering early and getting your question in. :)
     
    aimossy likes this.
  3. Sasha

    Sasha Fine, thank you

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    Bump! :)
     
    waiting and Kati like this.
  4. cph13

    cph13 Senior Member

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    Sasha, Thank you so much for posting this. Dr. Levine is my dr. How did I not know this. Talk about being low key, Dr. Levine, LOL
     
    Sasha likes this.
  5. aquariusgirl

    aquariusgirl Senior Member

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    Me too ....I like her ...has she been able to help you
     
  6. Kati

    Kati Patient in training

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    This is starting now, hosting by Dr Nahle
     
  7. Kati

    Kati Patient in training

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    Here are slides screenshots
    image.jpg image.jpg
     
    Gemini, Valentijn, aimossy and 2 others like this.
  8. Kati

    Kati Patient in training

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    image.jpg
     
    Valentijn and catly like this.
  9. Kati

    Kati Patient in training

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    image.jpg
     
    Valentijn, aimossy and catly like this.
  10. Kati

    Kati Patient in training

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    image.jpg
     
    Valentijn, aimossy and catly like this.
  11. Kati

    Kati Patient in training

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    image.jpg
     
    Valentijn, aimossy and catly like this.
  12. Kati

    Kati Patient in training

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    image.jpg
     
    Valentijn, aimossy and catly like this.
  13. Kati

    Kati Patient in training

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    image.jpg
     
    Valentijn, aimossy and catly like this.
  14. Kati

    Kati Patient in training

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    image.jpg
     
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  15. Kati

    Kati Patient in training

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    She is saying there is lots of work to be done with these agencies/websites to portray the right information and represents the views of the experts.
     
    Valentijn, aimossy and catly like this.
  16. Kati

    Kati Patient in training

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    image.jpg
     
    Valentijn, aimossy and catly like this.
  17. Kati

    Kati Patient in training

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    Qustions and answers:

    How do you rule out chronic lyme?

    - she does thorough assessment.
    - chronic Lyme have deeper neurological component, joint swelling, tingling and numbness.
    - she refers to Lyme dr
    - no easy answer.

    Can one have autoimmune disease and still have Me/cfs and how to differentiate?

    - tough question.
    - Joint pain/swelling, other symptoms like cold sore hair loss, Raynauds, RF, lupus ANA would differentiate.
    - would refer out to rheum
    - believes pts could have co-morbid conditions.
    - some will come with positive serologies causing false positive- it's not easy.

    What is being done to increase access to specialists and train them

    - it's a big issue that Dr Levine takes at heart
    - this illness takes an enquiring mind from the drs
    - tremendous lack of knowledge from clinicians and perhaps a lack of desire from med school teach about ME/cfs
    - difficult to break the barrieres

    Mycotoxin theories have been disproven in ME/cfs?

    - nothing has been disproven
    - looking at gut bacteria encouraging growths of fungi/yeast
    - secondary effects of main cause?
    - pts exposed to mold environment- difficult to measure. No accurate blood test to determine what we're looking at

    What are your thoughts on use and efficacy of Ampligen, Valcyte, Vistide on IgG + viruses?

    - use Valtrex, Valcyte but not VIstide and just 2 pts on Ampligen
    - likes to use Valtrex and Valcyte early on during viral phase, uses Lerner protocol
    - had only 1 person with IgM+
    - Never had PCR + on EBV
    - we still don't have a clue what the cause of this illness is. Many triggers.

    Interested in NK cells for a long time. What are your toughts on NK cell as dx marker?

    - look at cellular microRNa for NKcells. This maybe a clue as why NK cells may not work as well in ME/cfs
    - suggestion that microRNA may be hindering cytoxicity of NK cells.
    - fascinating. Furher testing on other diseases needed.

    Rituximab trial- how much longer do we have to wait for treatment?

    - has been a bit involved
    - pts sensitive to medication, many RX intolerable for pts .
    - couple of her pts have had Rituxan, it may work she is not optimistic due to toxicity
    - should be tried, but concerns about toxicity, this and other drugs.

    Partial remission?

    -has pts who stop coming to her
    Either they don't like her anymore (!) or either they got better
    There needs to be follow up to see what happened to these pts.

    What can pts do about brain fog?

    Tough one.
    Trial using Ritalin paired with vitamins. Some could not tolerate it. The milder pts (those working) may get too wired.
    B vitamins may be more helpful
    Maintaining some kind of schedule during the day may help. Interacting iwth people.
    Learning something new. (Language, for instance, new instrument) can help cognitive ability.
     
    ukxmrv, Effi, merylg and 9 others like this.
  18. aimossy

    aimossy Senior Member

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    The webinar is now on you tube. I'm not sure if it should be posted on a new general news thread @Sasha ?

     
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  19. Sasha

    Sasha Fine, thank you

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    I think here's probably good enough - most people with an interest are probably looking at this thread. :)
     
    merylg and aimossy like this.
  20. rebar

    rebar Senior Member

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    She too is my Doctor, I thought she did an honest assessment, and yes she is low key. She has always be open to trying "new" things, and is very well informed.
     
    merylg, Jennifer J, cph13 and 2 others like this.

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