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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Vic

    Healthy 34yo Having Sudden Issues. Doctors Clueless.

    Was there a period before your onset where you were exercising hard? Any muscle strains or minor/major injuries?
  2. Vic

    My recovery from Chronic Fatigue and Autonomic Disregulation

    Well... so far I've just done a quick skimming of the Reverse Therapy. In my experience the whole not giving a shit about what other people think or want of you does play a part in recovering, and from what I've seen it can definitely be a root cause in many peoples' cases, despite it not being...
  3. Vic

    The Relationship of Trauma and CFS (Sean Lynch, psychiatrist)

    Exactly.
  4. Vic

    ME associated with flu, but not vaccine

    But what if the distinction really is blurred? As I progressed through many stages of this... syndrome... one was indeed an odd type of narcolepsy. Aren't there studies that show it's like PWME are awake during sleep and asleep when awake? Anyways I haven't looked into it much, but one part of...
  5. Vic

    ME associated with flu, but not vaccine

    Why do you conclude that? What if ME/CFS is a type of narcolepsy?
  6. Vic

    ME associated with flu, but not vaccine

    Yeah I know but I figure if US's influenza shots don't need adjuvants theirs probably don't either.
  7. Vic

    ME associated with flu, but not vaccine

    I just found in an article on the CDC it stated, "In fact, no adjuvanted influenza vaccines are licensed in the United States, and no adjuvanted influenza vaccines were used in the United States during the influenza pandemic or in any other influenza season." So actually this study may be spot...
  8. Vic

    ME associated with flu, but not vaccine

    Yeah I know it means that. I was wondering why they did, because I'm trying to figure out how they did their analysis. It says "The adjusted HR of CFS/ME after pandemic vaccination was 0.97." "after pandemic vaccination" sounds like they used a time period, during/after a "pandemic." And how did...
  9. Vic

    ME associated with flu, but not vaccine

    HAH. Yeah right. The key here is the "per 100,000 person-months," which I think means they counted how often CFS/ME onset within a month of influenza diagnosis or vaccine shot. It takes time for the muscular damage of vaccines to snowball and eventually lead to CFS/ME, usually much longer than 1...
  10. Vic

    I wish people would understand

    Word. Although, I've realized that as long as you can couch it in terms of a struggle, people are a lot more empathetic and even interested in your pain, past, and what you're trying to do now.
  11. Vic

    Today, Thursday 15 Oct: Solve webinar with Dr Alan Light: New Developments in ME/CFS Research

    Wow what a waste of money, energy, time, thinking. Glad I didn't wake up for this, hah.
  12. Vic

    Fibromyalgia CFS vs Viral CFS?

    It is very related. http://forums.phoenixrising.me/index.php?threads/can-overtraining-syndrome-cause-me-cfs.9075/ http://forums.phoenixrising.me/index.php?threads/onset-associated-with-exercise.39910/
  13. Vic

    Severe PEM...feels like I don't even have the energy to breathe....

    Sapped. Underwhelming, I know.
  14. Vic

    Lyme Disease: CDC FAQs

    What if those neurological and immune issues have a root cause within your musculoskeleton? Why favor immunology or neurology as the probable source? After all, you can feel and see the musculoskeletal problems telling you there's something wrong with them. What if the CDC and "mainstream"...
  15. Vic

    Lyme Disease: CDC FAQs

    Bingo. I'm curious, Valentijn. Why do you discard a root musculoskeletal cause of CFS/ME when you clearly have musculoskeletal issues?
  16. Vic

    "Chronic Fatigue Syndrome: What’s in a Name" - Neurology Now

    Eh, from what I've seen it's true. CFS really isn't that bad of a name description-wise. To be fair, ME really isn't that bad either. They both have a large amount of truth to them. They're both incomplete, but the "encephalomyelitis" just doesn't fit everyone, and it's not because they're...
  17. Vic

    Presentation from one of the Vancouver clinic doctor

    Actually take back what I said earlier. Prbly second, third or fourth best CFS/ME/FM talk I've seen. Still good. Yeah they're playing a role but it's a downstream role, or at best a "hit and run." There is something else going on in the body locking in long-term debilitation that makes people...
  18. Vic

    Presentation from one of the Vancouver clinic doctor

    Probably the best talk I've seen on these syndromes in the last 2 years I've been researching them. He gets a lot of things right. CFS/ME/FM aren't all that unique and special in themselves. There is a huge array of syndromes with a similar underlying cause. Sad to say (actually good to say), it...
  19. Vic

    "Humans are frugivores"

    And... meat tastes really good.
  20. Vic

    Drug price increases 5000%

    Just imagine if all this money was spent on things that actually made people healthier...
  21. Vic

    Career Advice for Physicist.

    For now you just have to take my word for it. Or you can take your shirt off and look in a mirror. Just my experience and some observations. Too complicated for me to explain here.
  22. Vic

    Career Advice for Physicist.

    Everyone with CFS/ME has an asymmetrical shift in their shoulders. For some this shift can get aggravated while sitting at a computer. For others the arm positioning of using a keyboard/mouse provides a support for that asymmetry, allowing them to relax more like @Hip said. But when you get back...
  23. Vic

    "I couldn't get out of bed for eight months - now I'm a burlesque stripper"

    Nice. I don't doubt it one bit.
  24. Vic

    Career Advice for Physicist.

    @bananabas Don't do anything that involves long computer use. Computer activity is one of the major reasons people with CFS/ME don't get better. From experience/observation.
  25. Vic

    My recovery story, in case anyone is interested

    @james7a I've noticed my symptoms get worse when I play games. What kind of games did you play james? Console? Computer? RPGs? Shooters? Strategy?
  26. Vic

    Chalder & Godfry 2009 - CFS in adolescents: Do parental expectations of their child's IQ...

    I understood "Type A personality" as just a figure of speech. It fit me and a few others I've seen. Heard some researchers mention it and it just made sense to me. However, it's not really "Type A personality." It's more like a narcissistic insecure type of personality that drives someone to...
  27. Vic

    Chalder & Godfry 2009 - CFS in adolescents: Do parental expectations of their child's IQ...

    This study is actually very interesting. I've seen several cases of people with CFS who have/had parents with high expectations. It causes the child (or adult) to have a tendency to push themselves very hard, past their limits, which makes them vulnerable to injury. They might grow up scared...
  28. Vic

    What I discovered so far

    "Anyway, in the last years of primary school and the first years of high school, I started to get skinny to the point that people wondered whether I ate enough. I became chronically underweight and I actually started to feel ill at that time. For some reason I started to develop some form of ADD...
  29. Vic

    What I discovered so far

    Your first 3-4 paragraphs sound a lot like me. I'm curious, at what age did you start using computers?
  30. Vic

    When pacing doesn't work..

    I think that's not a good idea. Going to be wet can allow mold and bacteria to grow at a greater rate.