エピソード

  • The Blackhole of ME/CFS Medical Care
    2025/01/20

    My bloodwork never matches how I feel. Treatments don't work or make me worse. I am constantly dumping energy into seeking new treatments that likely won't work. This system has failed us...

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    3 分
  • Ron Davis's message of hope for 2025 and plea for help
    2025/01/15

    I think of you all every day as I work to untangle the complex molecular basis of this horrific disease…I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure…

    Link to Fundraiser

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    3 分
  • Chronically Sick Holidays
    2024/12/24

    Whatever you’re celebrating this holiday season, so many of us will be lonely…It’s important when we have lost something to not just focus on what we have lost, but also remember what we still have. This is the way we can survive anything.

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    3 分
  • Make a Holiday Plan and Check it Twice!
    2024/12/20

    If we head into the Holidays with no plan and expect to "feel our way" through it safely, we will likely be in for a deathly surprise crash that could be devastating…So we need to make a plan ahead of time for how we will use our energy during the holidays…and stick to it…

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    4 分
  • Health Care Failings
    2024/12/15

    A great example of how our health care system fails chronically sick people: My Jtube clogged... A Jtube breaking or clogging is an emergency - it means a person cannot eat or take meds. You would not even leave a dog stuck in a house with no food or water.

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    2 分
  • Thanksgiving 2024
    2024/11/27

    There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday I will be a part of it again. For now, I hibernate with the rest of you…

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    2 分
  • Feeling Embarrassed About Ourselves
    2024/10/29

    I need to speak to a disgusting and ignorant post by someone on X/Twitter...No one with ME/CFS or Long Covid should EVER feel embarrassed by how they look or how they have to live their life, and no one with ME/CFS or Long Covid should EVER feel like they need to hide what they look like or what their life is like from the public.

    Fundraiser Link: http://spot.fund/FindACureForMEcfs

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    4 分
  • My 41st Birthday Fundraiser for Ronald W. Davis PhD's ME/CFS Research!
    2024/10/24

    Hi everyone, I’m doing another fundraiser for Ronald W. Davis PhD.’s ME/CFS research for my 41st birthday!

    http://spot.fund/FindACureForMEcfs

    …Since 2020 we have raised $184,000 for Ron’s research solely from my birthday fundraisers! This is incredible and only possible because of all of you…Let’s all come together and get Ron the supplies he needs to do these critical experiments that are honing in closer and closer to the root cause of ME/CFS!

    ✏️ My ME/CFS Blog

    ❓What is ME/CFS?

    👤 My Story

    📄 ME/CFS Resources

    🙏 Donate to ME/CFS Research

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    3 分