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Ros Vallings (NZ) to give series of talks in Ireland - May 2019

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Apr 28, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "Dr. Rosamund Vallings Talks
    The Irish ME/CFS Association is pleased to announce that it has arranged for Dr Ros Vallings, a leading international ME expert from New Zealand, to give 5 ME/Chronic Fatigue Syndrome talks in Ireland this May. The talks will include questions-and-answers sessions."

    full details of all talks here:
    http://irishmecfs.org/events.html#drvallings2019
     
    WillowJ, Michiel Tack, Nellie and 8 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Bumping this as first meeting is this Friday.
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Understanding the reality of chronic fatigue


    article in Limerick Post
    https://www.limerickpost.ie/2019/05/20/understanding-the-reality-of-chronic-fatigue/

    sigh, when will they stop using headlines like this.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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  5. Andy

    Andy Committee Member & Outreach

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    MEMarge, Hutan and rvallee like this.
  6. Barry

    Barry Senior Member (Voting Rights)

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    Almost seems like a milestone (one of many) that advocacy efforts should set. Tightly focus on getting headline writers getting to consistently get this right. If we could get them to understand why it is important, then that would have significant pull-through effects I would think.

    In fact makes me wonder if a good advocacy strategy might be one of "incremental improvement". Setting a series of small but important goals to strive for, rather than striving for too many big hits. Smaller successes can be easier - and faster - to achieve, and pave the way for more ... after half a dozen or so you can end up with a big success.
     
    WillowJ likes this.
  7. Andy

    Andy Committee Member & Outreach

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    I've quickly scanned through the slides and the one thing that really stood out to me was
    on slide 26. Now there obviously could be additional context that I won't be aware of just from the slide but that seems quite a bold statement to make to me.
     
    Sunshine3, MEMarge, chrisb and 6 others like this.
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I'm disliking a fair few phrases on the slides and I've only got as far as no 7!
     
    Mariaba, Sunshine3, Sly Saint and 3 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  10. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I went to see her when I first became ill. I took nothing from it only to eat salty foods. M. E can be progressive, to say it is not is ridiculous and again minimizes the magnitude of the illness. She did not speak about severe M.E in her talk either. I wasn't impressed.
     
  11. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    A ridiculous statement.
     
    Andy likes this.
  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    My 2 cents:

    I've said to people before that it's generally not progressive, once people are diagnosed; can reduce their workload and responsibilities; are given plenty of practical support including, if necessary from State agencies; and are able to live within their energy envelope. I do think that if someone is deteriorating, these things should be looked at.

    I don't consider it a progressive disease like motor neuron disease.

    People can be struggling to deal with the level of impairment they have; giving too negative a prognosis might lead to depression and/or anxiety and/or possibly even in some cases suicide.
    The odd partner might even leave someone if they think it is a progressive condition.
     
  13. Trish

    Trish Moderator Staff Member

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    An interesting view, @Tom Kindlon, and one very hard to research, since so few of us, I suspect, are able to achieve such a high level of ideal care, and stay completely within their energy envelope. Is there research evidence? Is there data on what proportion continue to decline despite best care?
     
  14. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I know of numerous people who have declined despite good care including myself.
     
    Willow, MEMarge, Trish and 1 other person like this.
  15. Andy

    Andy Committee Member & Outreach

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    And what percentage of people are going to be able to do all of these things? Wouldn't it be more accurate to say that, under less than ideal circumstances, there is a large chance that ME will be progressive, but the closer you can get to an ideal circumstance, the smaller chance that becomes.

    Yet people, as best we know, still die from ME. I'm not convinced this comparison is that useful.

    And personally I'd rewrite that as "People can be struggling to deal with the level of impairment they have; giving too positive a prognosis might lead to depression and/or anxiety and/or possibly even in some cases suicide if reality, for an individual, doesn't match the false hope they have been given. The odd partner might even leave someone if they don't think it can be a progressive condition."
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    I've never looked closely at this, but I was under the impression that the research available indicated that people were more likely to report some improvement over time than decline (though a lot of people not showing any substantial improvement and a lot reporting some decline).

    Having said that, there are other things I've seen from Vallings that don't look good to me.
     
    Michiel Tack likes this.

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