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  1. JaimeS

    What is the course of your ME/CFS?

    Thrush? Cryptococcus?
  2. JaimeS

    Poll: When during the day do you have the most energy? That is when you are not in relapse, and not sick with the flu

    Ugh. That was one of my least favorite aspects of the illness, the "wired but tired". Have you found anything that helps? [Edit: maybe PM me, since this is off topic?]
  3. JaimeS

    Poll: When during the day do you have the most energy? That is when you are not in relapse, and not sick with the flu

    I'll wake up and an entire limb will have gone numb in the night! Not because I'm sleeping on it funny... just because. :confused: Bloodless is right! We def have issues with blood flow. I also used to be like that, around onset though. How long have you been sick? Def better and...
  4. JaimeS

    What is the course of your ME/CFS?

    Just goes to show how the disease shifts. :) If you'd have asked me a month ago, I'd have said the same. This is the first cold I've caught in 3 yrs, so my own system is normally pretty active, and immune supplements like Vit C are normally a disaster for me, increasing inflammation and...
  5. JaimeS

    Open (MA, USA) “Brain Scan Study [PET-MR] of ME/CFS, 2023, VanElzakker

    I've asked him; I'll let you know if he responds. He may be pretty inundated just now.
  6. JaimeS

    Poll: When during the day do you have the most energy? That is when you are not in relapse, and not sick with the flu

    There's your cortisol being super-low. A lot of people (ppl with "chronic fatigue") feel pretty bad at that time because that's when their cortisol is lowest. You may have cortisol issues ( a big MAY, there). I feel better the other way around. When my cortisol drops at 3pm I'm pretty destroyed.
  7. JaimeS

    What is the course of your ME/CFS?

    I don't feel like 'remitting' and 'remission' are the same term. To remit means to back off of something, not to recover. "A relapsing-remitting disorder means the symptoms are at times worse (relapse) and other times are improved or gone (remitting)." Improved OR gone, not cured.
  8. JaimeS

    What is the course of your ME/CFS?

    Just got through this... it's like first you fight the infection, and then you fight the complete immune depletion that is its result. By using meds that support the immune system -- or even excite it more than I could normally tolerate -- I went from complete relapse back to my usual self. I...
  9. JaimeS

    Poll: When during the day do you have the most energy? That is when you are not in relapse, and not sick with the flu

    Other. Between 8am and 11am ... and then between 8pm and 11pm. Two mini-surges of energy. Middle of the day, I get more and more useless.
  10. JaimeS

    What is the course of your ME/CFS?

    @MeSci -- I used MS definitions for, as I said, swiftness. Our disease has been described before as relapsing-remitting, as has MS. I've also read a paper that discussed similarities and differences between the two conditions. As I mentioned above, MS patients, too, find that they may fit a...
  11. JaimeS

    What is the course of your ME/CFS?

    Secondary-progressive (relapsing-remitting, but general course of worsening) Primary-progressive (gradually worsening with no relapsing-remitting pattern) So the difference is basically that in 'secondary progressive' you have periods where you feel better and periods where you feel worse...
  12. JaimeS

    What is the course of your ME/CFS?

    I believe so. MS is treatable even if not curable.
  13. JaimeS

    What is the course of your ME/CFS?

    To those who have discussed shifts in their condition, people with MS slide from one of these to the other as well. I'm also sure that many feel as though the category into which their doctor has placed them fits in many ways but doesn't fit in some, or at some times. We're invariably more...
  14. JaimeS

    Research compilations - J.S and GOP

    Actually, it would be up to who owns them. ;) I think it would make sense to put research compilations on the same main webpage with links and credit. For example, if you were linking back to something on OMF's page, you'd want to mention Open Medicine Foundation and the author. As long as...
  15. JaimeS

    What is the course of your ME/CFS?

    Thanks, Kafka, I'll add them by hand. :) (For good reason) you can't change a poll once people have answered it.
  16. JaimeS

    What is the course of your ME/CFS?

    Considering you have times you feel better and times you feel worse, I'd choose #1. If you feel your overall course has been that you're getting worse over time, I'd chose option #2.
  17. JaimeS

    What is the course of your ME/CFS?

    Might have been better to ask only people who've been sick more than 2 or 3 years. Note that it says "better wellness" in the description. That does not mean well. I had one person on TOF reply that they did not have a relapsing pattern nor were they getting worse. Their health state was...
  18. JaimeS

    What is the course of your ME/CFS?

    I appreciate that. This is for curiosity's sake, not for a study.
  19. JaimeS

    What is the course of your ME/CFS?

    I've asked on The Other Forum (TOF) as well, so please don't respond in both places. :) I'm wondering whether people who have ME/CFS are willing to check off what their 'pattern' of ME/CFS is like. For the sake of expediency, I've copied the types of multiple sclerosis. I'd love to also...
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