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  1. JaimeS

    PEM from too little activity?

    And in my case, exact opposite -- early in my illness it was one of my most notable symptoms that I just had to keep moving or I'd start to feel weighted down, in pain, heavy-limbed, brain-fogged, etc. But a crash does have other symptoms as well.
  2. JaimeS

    It's not malaise!!!

    I started off moderate and have gotten less sick over time. Still, I was home all last week, too sick to work. I've been calling it a "mini-crash" because I still have the privilege of forming complete sentences and stumbling to the loo. It's worlds away from a crash when my baseline was...
  3. JaimeS

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

    Watanabe did a very small study ages ago that hasn't been replicated. Nakatomi et al. (2014) performed a small PET imaging study using 11C-(R)PK11195, a protein used to visualize brain inflammation, since it is a marker for neuronal damage. The BPND values of 11C-(R)-PK11195 in the cingulate...
  4. JaimeS

    Development of surrogate end-point biomarkers for chronic fatigue and myalgic encephalmyelitis/chronic fatigue syndrome (ME/CFS)

    I was wondering if we were ever going to see a follow-up on this one! Awesome.
  5. JaimeS

    It's not malaise!!!

    I've heard it called 'post-extertional neuroimmune exhaustion' in the ICC, but that turned it into PENE, which was not so great for anyone who speaks Spanish... like calling that cute little car a Nova ('does not go', in Spanish!)
  6. JaimeS

    What can a CPET do to diagnose ME, OI, mitochondrial disease, heart conditions, etc.?

    Sometimes I think that the reason I reacted as I did to a single-day CPET is because it was only technically a 'single-day'. I'd been at Mayo for nearly a week already. The tests there were stressful, and Mayo itself is a giant industrial complex greatly resembling an oversized shopping mall...
  7. JaimeS

    Vitamin D status in chronic fatigue syndrome/myalgic encephalomyelitis: a cohort study from the North-West of England

    Perhaps their point is that hypovitaminosis D is not causing their patients' chronic fatigue in which case yes, they've made their case. Here is other research, also UK, done better; all of these have noted marked depression of Vit D levels in patients...
  8. JaimeS

    What can a CPET do to diagnose ME, OI, mitochondrial disease, heart conditions, etc.?

    Mine was 67% of normal VO2. I'd been working full time at a very active full-time job up until a few months before, but they still decided that meant I was just deconditioned. The doctor's notes urge me to exercise for 30 minutes a day! :confused: 80% is meant to be 'just deconditioned'...
  9. JaimeS

    IgG - what is it good for?

    I was thinking of both Tuller and Rehmeyer.
  10. JaimeS

    Vitamin D status in chronic fatigue syndrome/myalgic encephalomyelitis: a cohort study from the North-West of England

    Sorry, @MeSci -- are you saying that ppl who were taking Vit D were, or were not included when they were determining who was low? If those ppl were included OR excluded that's bad science, though: 1) Included -- well of course their Vit D wasn't low; they are taking it 2) Excluded -- well of...
  11. JaimeS

    What can a CPET do to diagnose ME, OI, mitochondrial disease, heart conditions, etc.?

    Yesssss. I'm one of those pwme who had a really weird / unusual single-day CPET. VO2 low, lactic acidosis and breathing problems afterwards. Memorably, the neuro who looked at my exercise test said, "totally normal... great!... if you were 80+ years old." I was in my late 20s early 30s at...
  12. JaimeS

    What can a CPET do to diagnose ME, OI, mitochondrial disease, heart conditions, etc.?

    In the words of Tumblr, this is the high quality stuff I want to see on my dash. ;) Incredibly useful, @Ryan31337
  13. JaimeS

    IgG - what is it good for?

    I've tried to articulate this before, but I'm very aware of my own cultural context... here in the US, PACE has been derided so thoroughly. There are so many articles published in reputable locations that point out PACE's flaws that it would be a challenge for a US doctor to not at least be...
  14. JaimeS

    Video of 9 Nov TED interview with Jen Brea

    This is tough to watch, like all of Jen's interviews. I'm not sure I'd do so well if I had to repeat over and over my answer to the question, "so, it was a diagnosis of conversion disorder at first, right? Which is hysteria" and having to explain the loss of identity that comes with ME over...
  15. JaimeS

    Vitamin D status in chronic fatigue syndrome/myalgic encephalomyelitis: a cohort study from the North-West of England

    Yes, my levels are normal NOW.... because I take quite a bit. Even if you tell the patient to stop taking supplements, Vit D levels take awhile to drop. Note there's no mention (that I can find, happy to be corrected) of whether or not patients were taking anything. Note this is UK, they used...
  16. JaimeS

    IgG - what is it good for?

    ooooooh shiny. :thumbup: Cool one on immune system pathology (looks like mostly autoimmunity) here: https://www.edx.org/course/fundamentals-immunology-death-friendly-ricex-bioc372-3x [Edit: Ah, here we go: Fundamentals of Immunology I...
  17. JaimeS

    PEM from too little activity?

    I agree calling it PEM is inaccurate. But the symptoms I get from being too still too long definitely mimic those I get from overexertion.
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