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Recording of Lucinda Bateman MD March 4 talk: "New Clinical Definitions for ME/CFS"

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Dolphin, Mar 7, 2015.

  1. Dolphin

    Dolphin Senior Member

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    (I haven't watched this myself)
    ETA: Original link no longer works so have posted in the newer one that does work
     
    Last edited: Mar 8, 2015
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  2. Amaya2014

    Amaya2014 Senior Member

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    I'm not finished yet. It's a lot to take in but my first thought is that we may have been better served for Dr. Bateman to have released this education piece prior to the written report. To me she "gets it". Plus, she is adding extra language that gets lost in the written material. She gives real world examples, shares her personal experiences as a provider, and identifies some of the common issues that cause so much trouble when patients interact with doctors.

    Personally, I thought OI wasn't so bad for me compared to the cognitive impairment but now I understand how I was experiencing OI. When I first became ill I was experiencing lightheadedness, daily headaches (prior to CFS I've had maybe 5 my whole life), and vision problems.

    She highlights the bed-bound and home-bound (our often forgotten warriors) and she doesn't give the light of day to CBT and GET!

    I think most doctors in practice will find it hard to spare the time to watch all of this but if the education of new doctors will be like this...I can only praise God...this was a beautiful day. Sending hugs and thumbs up CFS/ME/SEID community.
     
    Last edited: Mar 7, 2015
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  3. worldbackwards

    worldbackwards Senior Member

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    Nice to be called a "warrior"!
     
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  4. Kati

    Kati Patient in training

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    Thx @Amaya2014 that's great news
     
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  5. Dolphin

    Dolphin Senior Member

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    Watching this new after @Amaya2014's recommendation.
    I thought it was interesting that she said they used cognitive impairment and/or orthostatic intolerance partly because the paediatric population tends towards POTS and less cognitive impairment.
     
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  6. Ember

    Ember Senior Member

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    Question: “Who determines the codes and what's the process?”
    Answer: “I honestly do not really know enough to give you a good answer.”
     
    Last edited: Mar 8, 2015
  7. Scarecrow

    Scarecrow Revolting Peasant

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    @Dolphin the link in your first post isn't working for me. Here's another:

     
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  8. Denise

    Denise Senior Member

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    I wonder what (if anything) that says about prognosis for pediatric patients who have OI and lots of cognitive impairment.
     
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  9. Ember

    Ember Senior Member

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    Question: “What kind of specialist would best support SEID and the new clinical criteria?”

    Answer:
     
  10. Amaya2014

    Amaya2014 Senior Member

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    @Ember I think this is very honest of her, although it would have been nice to hear something specific. From what I've experienced, I don't see why rheumatologists here in America are "saddled" with the referrals. The illness is systemic and seems primarily neurological/immunological and/or infectious disease specialist (although I secretly hope this is not what we have).

    I hope others chime in, or maybe it should be its own thread, but what medical field/specialists do you see us being best served? (Other than CFS/ME specialists)
     
  11. Ember

    Ember Senior Member

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    “There are no exclusionary criteria in this case definition:”
     
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  12. Dolphin

    Dolphin Senior Member

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    Thanks. Yes, OFFER (Utah) have v2 = version 2 under the new link. I've now changed the link in the first message.
     
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  13. Ember

    Ember Senior Member

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    Question: “Who determines the name?”

    Answer:
     
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  14. Dolphin

    Dolphin Senior Member

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    I found the talk more informative/interesting than the questions-and-answers session.
     
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  15. Dolphin

    Dolphin Senior Member

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    Somebody commented on Facebook:
    14194_10205080566548850_304875648262765212_n.jpg

    I found this bit, and how she explained it, interesting. They were actually trying to move away a bit from "fatigue" for this item in the criteria.
     
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  16. Ember

    Ember Senior Member

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    Question: “If this is a clinical case definition, what will be the research case definition going forward?”

    Answer:
     
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  17. Kati

    Kati Patient in training

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    What we are seeing here is a caring, honest, experienced physician who understands the illness and co-morbidities very well and wants the disease to move forward. The IOM contract was 'the' opportunity.

    It is HHS' turn to speak up and react appropriately.
     
    Last edited: Mar 8, 2015
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  18. Forbin

    Forbin Senior Member

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    Thanks for posting this. I thought this was very informative in terms of understanding the the rationale of the committee on various issues.

    Here's an interesting tidbit that Dr. Batemen mentioned in the Q&A:
    I've suspected that this was the case. I've seen many studies dismissed by some patients because "they only used Fukuda," but I doubted that knowledgeable researchers would want to waste their time trying to do research on such a heterogeneous population. My impression is that it may have been thought politically correct to only mention Fukuda because that's been the CDC line, and it's probably the only population you can get an NIH research grant for - but no one says that you can't use a more stringent subset of Fukuda.

    You can see the suggestion of this in the spinal fluid proteome study by Drs. Schutzer and Natelson. The patients "meet" Fukuda, but are also "evaluated by an expert in unexplained fatigue and pain." That "evaluation" could be much more selective than Fukuda.

    It was actually quite heartening to see the Lipkin/Hornig study come out and say that the patients met both Fukuda and the CCC. That may have been done before, but I thought it was an important step forward.
     
    Last edited: Mar 8, 2015
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  19. Dolphin

    Dolphin Senior Member

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    Yes, I know some researchers in the UK who do this (say they use Fukuda but actually require post-exertional malaise).
     
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  20. Ember

    Ember Senior Member

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    Some closing comments...

    “Yeah, they're pretty... people are not happy about this new name and.... But my...the way I look at this is...we have not made any progress really for two decades to speak of in this field. So something had to change. It just wasn't working. I'm all for change and trying things.”
     
    Kati likes this.

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