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Peace Arch News: White Rock woman shares her struggle with "horrendous" fatigue

Discussion in 'General ME/CFS news' started by Kalliope, Apr 26, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,239
    Location:
    Norway
    I don't think this article from yesterday has been shared yet on the forum? Nice to see coverage from Canada.

    White Rock woman shares her struggle with "horrendous" fatigue

    A report from the Myalgic Encephalomyelitis & Fibromyalgia Society of BC says that Canadian ME research is “essentially non-existent.”

    “Research capacity is severely limited as very few scientists enter the field, choosing instead well-funded research areas,” the report states.

    Frustrated with the lack of research funding the condition receives, Pauw said she contacted PAN to raise awareness about the disease, which affects approximately 70,000 people in British Columbia.

    A challenge with raising awareness about the disease, Pauw said, is that the people affected by the condition have little energy to lobby government.

    “Our population is probably the least energetic physically and mentally.

    “It’s creating quite a challenge to do this. But I think if other people are aware of this… that would be my goal, to make one person aware of it. Hopefully, that person would be the government.”
     
    Keebird, ahimsa, TigerLilea and 18 others like this.
  2. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    Messages:
    1,450
    I get tired of the word fatigue. I think "least energetic physically and mentally" is a good way to put it.
     
    Starlight and Andy like this.
  3. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    2,107
    Indeed, it is not fatigue and it is not tired. It’s like a car that doesn’t have gas.
     
    Starlight, andypants, MEMarge and 2 others like this.
  4. oldtimer

    oldtimer Senior Member (Voting Rights)

    Messages:
    637
    Location:
    Melbourne Australia
    It's encouraging to see good articles popping up all over the place.

    I suppose defining it as a neuro-immune disease is as good as anything until we find out where the emphasis actually lies.
     
  5. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,816
    Location:
    Metro Vancouver, BC - Canada
    White Rock is in my part of the world. For the most part, when there are media reports about ME/CFS in Canada, they tend to be positive stories such as this one. Not the negative blame the patient, wrong thinking, deconditioned, blah blah blah, type stories that come out of the UK.
     
  6. oldtimer

    oldtimer Senior Member (Voting Rights)

    Messages:
    637
    Location:
    Melbourne Australia
    I love White Rock - well the marvellous view from the Hancock Wildlife Foundation's bald eagle live cam on the water's edge at least:). I've been watching the eagles every year since 2010.
     

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