Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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The third (second open) IOM meeting May 5th

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Mar 31, 2014.

  1. Nielk

    Nielk

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    Does anyone know what Lenny means by one - one and two-two?
     
  2. Cheshire

    Cheshire Senior Member

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    Watching too. But I'm going to sleep, english with japanese accent is just too much for my brain!!
     
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  3. Nielk

    Nielk

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    This is actually a test for ME/CFS. IF YOU CAN FOLLOW THIS AND COMPREHEND, chances are that you do not suffer fromME/CFS.

    If you are ready to shoot yourself after listening to this for over an hour, no further testing is needed.
     
    Valentijn, Cheshire, WillowJ and 5 others like this.
  4. Nielk

    Nielk

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    Did you ever go into REM on sleep study?
     
  5. Kina

    Kina Moderation Team Lead

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    At this point, I am really annoyed. Really -- having ME/CFS has a negative effect on your cognitive abilities -- really. No shit Sherlock. What a waste of time. An exercise in the obvious. :vomit::vomit::vomit:
     
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  6. Nielk

    Nielk

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    This whole meeting just seems to me as a fill in - a puppet meeting to waste time just so that they can claim an open meeting with patient participation. Now they can check that off their list.
     
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  7. SOC

    SOC Senior Member

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    So did any patients actually participate -- as in talk to the panel? Or did we just get to "participate" by listening?
     
  8. Nielk

    Nielk

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    We have sleep problems - check
    We have cognitive problems- check
    We had a patient panel - check
     
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  9. Nielk

    Nielk

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    There was a panel of four. Two patients and two carers who each spoke for fifteen minutes. They also answered questions.
     
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  10. Firestormm

    Firestormm Guest

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    I thought the neuropsych/cognition bit was good. They need to hear it.
     
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  11. SOC

    SOC Senior Member

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    Did they say anything helpful? Did they educate anyone? (Sorry, I was working through most of the meeting and missed it)
     
  12. Nielk

    Nielk

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    Some were better than others. They gave a good account of what it's like living with this beast and the difficulties with finding diagnoses and knowledgeable experts.
     
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  13. Nielk

    Nielk

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    I was disappointed with the answered to what we should name the disease. I was very frustrated with the list opportunity to drive the point that we need a strict definition.
     
  14. Nielk

    Nielk

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    I was happy that neuro cognitive and PEM symptoms should be hallmarks.
     
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  15. Firestormm

    Firestormm Guest

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    I'm still watching it. Or am I watching a repeat? Still Lange (Whatever) talking cognition.
     
  16. Nielk

    Nielk

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    I have yet to see Natelson at any IOM meeting.
     
  17. Kina

    Kina Moderation Team Lead

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    It's still on. She's the last speaker before the Q & A. I had to turn it off. It's so disappointing and very very worrying.
     
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  18. SOC

    SOC Senior Member

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    Care to extrapolate? :) Or do I mean explicate? o_O
     
  19. Kina

    Kina Moderation Team Lead

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    Well I guess it's the caliber of the presenters. We have some huge heavy hitters on our side, yet they had lightweight presenters that said nothing but the obvious. I appreciated the patients/caregivers that got up and told their stories but this has been done ad nauseum and really in the end doesn't seem to have any effect. It's a clusterflock. :confused:
     
  20. Denise

    Denise Senior Member

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    – First - I am NOT holding my breath about the report IOM will produce. I have significant concerns about the process and what may come out of it. –


    On a different IOM note - in more than one place I have seen criticisms of the patient/advocate panel at the May 5th IOM meeting for telling illness stories 'yet again when they've been told so many times before.'


    But it is important to note that the IOM agenda listed the focus of the patient/advocate panel as

    Patient and Advocate Panel: Challenges of ME/CFS patients when interacting with the health care system” (http://www.iom.edu/~/media/Files/Activity Files/Disease/MECFS/Open Session Agenda_04 17 14.pdf )


    Each of us has had (far too many awful) encounters with the healthcare system. If providing specific input about some of our experiences to the IOM committee can help break that cycle, I think that could help us all.


    Additionally IOM provided the following questions to panel participants:

    “Ø Please tell us about your (or your family member’s) experiences in seeking for care for ME/CFS.

    - What symptoms brought you to your healthcare provider?

    - What type of healthcare provider diagnosed you?

    - How long did it take to get diagnosed?

    - What types of obstacles did you encounter in getting a diagnosis?

    - How have your symptoms changed over time?

    Ø In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?”


    So my presentation addressed

    onset and what took us to the healthcare provider (symptoms)

    baseline

    cognitive impairment and post-exertional collapse (post-exertional malaise)

    obstacles

    symptoms 2014

    healthcare providers NEED to know


    I wove the thread of cognitive impairment and post-exertional collapse (aka PEM) through my presentation to demonstrate that I think that as a first step healthcare providers NEED to know that cognitive impairment is debilitating, frightening, and frustrating and that they NEED to know that post-exertional collapse is debilitating, pervasive and can be triggered by cognitive and/or physical exertion.


    Yes. I n my presentation I told yet another patient story, yet another time. I did so while trying to answer their questions so that I know they have been given at least some accurate information (since I don't know what material they are reading as part of their literature review).
     
    rosie26, Ruthie24, jspotila and 9 others like this.

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