1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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POLL OPEN! Terminology, Definitions, and Criteria

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Jul 10, 2014.

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Please indicate if you agree or disagree with each of these 5 items, thank you!

  1. Agree with Item 1

    57.1%
  2. Disagree with Item 1

    28.6%
  3. Agree with Item 2

    28.6%
  4. Disagree with Item 2

    71.4%
  5. Agree with Item 3

    57.1%
  6. Disagree with Item 3

    28.6%
  7. Agree with Item 4

    71.4%
  8. Disagree with Item 4

    28.6%
  9. Agree with Item 5

    42.9%
  10. Disagree with Item 5

    42.9%
Multiple votes are allowed.
  1. ahmo

    ahmo Senior Member

    Messages:
    1,415
    Likes:
    1,014
    Northcoast NSW, Australia
    I've only recently looked up from my 1.5 years participation on pr, from the Methylation and Detox forum to see what else is going on. I've spent a long time on this thread today and yesterday. I've also spent time on the thread, "What is the One thing about Suffering w/ Severe ME/CFS that the world Needs to Know?"

    I thought I could comprehend the questions reasonably enough to answer the poll, which I did before reading much else. I'm posting now to revoke my YES vote for #2. I didn't like the APPEALS label so much as thought it expressed something about the fatigue. But not only my reading thru the thread, but my own experience today makes me wish to revoke my vote.

    I've been rearranging my space over the last few days, pacing myself. Still, "Abnormal Prolonged Postexertional Exhaustion And Low Stamina" does not describe how I am today. It does not allude to how sensitive I am to light today, how I can hardly open my eyes, not due to sleepiness, but to some neurological discomfort. Nor to my slightly slurred speech. Even reading the many pages of this thread was more on the order of being in a trance, unable to mobilize myself to get up and go lie down.

    In venturing out from pushing myself to understand and implement methylation protocols, into the wider world of pr, I've learned that some of the members whose names and avatars I recognize, are bed-bound or wheelchair bound. I am home-bound, having gotten off my bed a year ago. Weekly showering and a severely restricted diet make tending to my daily needs manageable.

    Since I found my way out of a downward spiralling hellish existence 2.5 years ago, I have been on a path of healing. That healing has been of my CNS. I have slightly greater stamina than I did, so I'm less wiped out when I go out to Dr or shopping. I even managed to participate in a couple of family/friend visits of 2 hours in the past months, though I felt shattered afterwards. But it was the first time I could actually sit and participate in a conversation like this for more than a decade.

    What am I trying to say? Please cancel my vote. But something else. For the entire time I've been disabled, I've felt like I'm justifying myself. To the world and to myself. Regardless of the dictionary meaning, I believe malaise would reinforce that. Even now, as soon as I start feeling the least bit better, my mind jumps to what I can do to start earning some money. As If!

    I see that the viral infection I had 3.5 years before I collapsed was the onset. I even came to call myself 'chronically fatigued' at the time, started looking for info re CFS. I see that I'm so much better off than so many. And I recognize that the only reason I'm better now is because I'm micro-managing my biochemistry.

    Maybe I should have posted this on the "What is the One Thing About Suffering..." thread. I think I'm just coming to grips with the liklihood that as much better as I feel, this is likely as good as it gets. For that I'm very grateful, life before was unbearable. But I'd far rather ME, even w/ the CFS attached to it, than "Abnormal Prolonged Postexertional Exhaustion And Low Stamina". thanks, ahmo
     
    taniaaust1 and Sushi like this.
  2. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,156
    Likes:
    3,600
    USA
    @ahmo Please do not feel badly about struggling with this poll as I was not able to complete it myself. The format was just way too complicated for me!

    I also am less worried about the "name" of the disease at present as I feel more clarity re: the concept of the disease. I truly feel as my specialist said that it is a "viral re-activation disease caused by immune impairment" and with this impairment comes the fatigue, PEM, inability to produce energy on demand, POTS stuff, etc, etc. I meet the CCC and ICC criteria and whether it is called ME/CFS or another name in the future, I just want to get better.

    Of course in the long-term, there must be a unified, clear name along with a bio-marker for diagnosis and solid treatments for everyone. But for now, that is just a dream!
     
    taniaaust1, Valentijn, ahmo and 2 others like this.
  3. wastwater

    wastwater Senior Member

    Messages:
    190
    Likes:
    66
    uk
    Whatever happened to dr Byron hydes ME is a problem with microcirculation,did that not pan out
     

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