A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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  1. Kinesis


    Edit: I found the answer to my original question half an hour after posting it, so since I can't figure out how to delete it i'll just change the question:

    If you have them, how long do your relapse/remission cycles last? Are they brought on naturally by time or something else?

    And thanks for being patient with my noobiness!
    Last edited: Aug 16, 2016
  2. Snowdrop

    Snowdrop Rebel without a biscuit

    It's a good question but I think maybe a pretty open one as well.

    In my experience mild and moderate ME will experience bigger swings in flaring up with symptoms and that the best way to improve from this is to rest. Relapsing and remitting for me over decades has also become progressively worse with small swings in functioning. But I like others sick before the internet just kept on trying to function so the outcome will hopefully be different for those who become aware sooner.

    As to what triggers it--we can all speculate and have our theories but a lot of this is a big unknown. I had one episode send me to the couch for months after going to a Kundalini yoga class. We were doing a breathing exercise and moving our arms repeatedly. That was bad. I still shudder. To me that clearly had to do with some physiological response that my body didn't like what I was doing--everybody else in the room was maybe on some higher plane of existence--I was in agony.
  3. Kinesis


    @Snowdrop, now that you mention it, it is pretty broad.

    For me there have been fairly predictable cycles. I'll be in a rut for six weeks give or take, then one morning symptoms will begin to recede and then i'll wonder what in the heck I was so worked up about. But lately each cycle seems to lower the baseline a bit more.

    Last good-cycle I couldn't banish the sense of fatigue at all.

    In the overall bad cycle, there are always a number of mini cycles and crashes and whatnot. Some last for days, others for hours. I'm still so new at this I haven't quite figured out what's what. Didn't even know there was such a thing as CFS/ME until someone said I had it.

    I was hoping that if other people explained their symptom patterns it might help me better understand mine.

    And oh man, yoga can be ridiculous. Haven't been able to get into it for a couple of years now...
    Last edited: Aug 24, 2016
  4. Cog71


    Los Angeles
    I've been keeping a symptom diary for a while, and it makes absolutely no sense.

    In the moment, if you asked me, I could isolate the things I thought made me crash:
    - going longer than my limit on the treadmill (limit is walking 15-20 mins but I have a superhero complex that makes me want to do more when I feel I'm capable, and then it's all over)
    - drinking alcohol
    - getting stuck talking to somebody I don't want to be talking to
    - really bad night's sleep (all nights are rough, just some more rough than others)

    But then when I look back at my diary it's completely random. Yes, these things can and do make me crash, but there are just as many times where I've woken up in a crash for no reason after spending a perfectly good week pacing and sleeping and eating like a nun. And other times where I've decided to have a glass of wine and it's ended up being three and nothing bad seems to have happened because of it.

    Somebody brought up to me the otter day the idea of delayed reaction to things. I found that really depressing, because jeez - if I accidentally do 23 mins on the treadmill instead of 20 but don't crash until two weeks later, then how the heck am I supposed to know anything?

    I guess everybody's MMV, but 5 years in and I still feel like the more I learn, the less I understand...
    Tammy and Kinesis like this.
  5. Kinesis


    I'm only two years in, I think, and this makes me feel a bit less alone.

    Twenty minutes of hard labor will knock me into staring at the wall mode for hours. But then sometimes it won't.

    Mostly though, being too social for too long will always crash me, sometimes for days and sometimes delayed onset.

    My symptom journal also makes no sense.
    Cog71 likes this.
  6. Tammy

    Tammy Senior Member

    New Mexico
    I have always said the most predictable thing about this illness is how unpredictable it is.
    purrsian, Kinesis and Cog71 like this.

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