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A necessary compromise

Blog entry posted by KNXiaohe, Dec 16, 2013.

Hello again everyone,

After some interesting and informative interactions at another forum, and upon the advice of several members there, I've decided not to continue sharing personally here (or there... I won't be sharing anywhere for a while), at least not for the short term. The following are my reasons:

1. Privacy. I've already revealed quite a bit of personal information. Now that I'm going back to work, I don't want to take the risk that the stigma of having ME could cause me professional problems. This should only be a short-term consideration until, hopefully, I get established enough to afford to share more.

2. Time and energy constraints. I'm embarking on a pretty ambitious career in ME-related biomedical research. My remission has allowed me to function at 90-100% of normal but unlike a normal person, I can't push myself to do that "110% effort" without risking relapse.

3. I've seen some concerns raised here regarding the efficacy of one of the components of my treatment.

4. After considering some of the feedback I've received, I decided that I don't feel confident announcing that my treatments were successful until I've had a longer remission than three months.

But I will be back! I also may participate occasionally in the scientifically oriented threads.

Also, If anyone wants more information I'll be happy to communicate via PM or email.

Thanks to everyone for your friendly, supportive attitude and you'll be hearing from me again soon :)

I assure you no slow animals were harmed in my treatment process ;-p
KNXiaohe

About the Author

KN is in remission from lifelong ME/CFS/? and two other chronic illnesses. The storm started at age 3 and all her developmental windows were smashed so she never got a chance to establish herself as a "person." After getting off the prison bus, she's attempting to construct a decent approximation of a human identity, starting off with applications to grad school to research systems biology.
  1. Ambrosia_angel
    Hi don't let anyone put you of. Maybe the use of the word remission was a little but strong but the fact that these treatments have relieved your symptoms is still an extremely good though. Nobody is asking for any personal details, we'd just love to know how these treatments help 'your' body. :)
  2. taniaaust1
    Hi :) thanks for the reply, its okay, no need to do that.

    I actually dont consider it to be a remission if someone is having to rest aggressively for a few days due to mild symptoms. I'd compare that to saying one is in remission with cancer when one still has a cancerous tumor even if its shrunk a lot. This illness can greatly go up and down and have periods of that.

    I do hope that your remission thou does end up being a true remission.

    All the best
  3. KNXiaohe
    Tania...wow, 100km? That's awesome! I'm sorry to hear the remission didn't last...and believe me, with my history, I'm not counting on mine lasting either although I'll be doing everything in my power to make sure it does. I always rest aggressively for a few days when I feel mild symptoms returning.

    I never wrote the second piece because of concerns some members brought up, as well as not feeling confident since my remission has been so short. I can message you some details personally if you'd like though

    -KN :)
    taniaaust1 likes this.
  4. taniaaust1
    hi :)

    I really would like to look at what you posted about what was successful for you. I read your post on what wasnt successful but never saw what your post saying whatyou thought has to helped you which was the part I was really wanting to read. Can you please post the link?

    best luck with the improved health. Take care as even with proper full remissions (I had a true remission in which I was able to even do 100km marathon and wasnt having to watch myself anymore), these dont always last. (My remission was due to aggressive rest therapy).
    KNXiaohe likes this.
  5. KNXiaohe
    Thanks Beyond and Wool! I'll be back soon :)
    Beyond likes this.
  6. Beyond
    We will be waiting for you. Hope the remission lasts forever and you come back in some montsh to post what worked.
    WillowJ and KNXiaohe like this.
  7. WoolPippi
    I'm sorry we have to wait longer for your take on things, I'm so interested. But you have to do what is good for you :)

    About efficacy and claims of treatment: we all read here with sensible reservations and a solid knowledge that what works for one doesn't work for another. I love to theorize about things before trying anything and your set of negative principles is the one I use too. I am looking forward to comparing your set of positive principles to mine and hopefully enrich mine.

    Don't give much energy to people who dismiss your theories or your results.

    Best of luck in your job! And best of health.
    KNXiaohe likes this.