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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. Quemist

    Explaining CFS Symptoms to Well People

    I generally tell people, "you know that feeling right before you're about to get a really bad flu? Muscle aches, joint pain, chills, sore throat? Yeah, I have that every day." I have a mild case and I'm in some sort of remission right now.
  2. Quemist

    Study The Wild Animals and You Will Improve......

    Don't feed the trolls.
  3. Quemist

    Has anyone here tried a FMT?

    Did you see this one on Reddit? I read that too and thought it was interesting. Has to be some way of finding good donors.
  4. Quemist

    O-Chem Question: Does l-carnitine contain cis hydroxyl groups?

    Organic chemist here- there is only one hydroxyl group. It is plausible that it'll do something called chelating to the hydroxyl and the carboxyl. However, ribose is a ring and does have cis or trans hydroxyls because there are two different alcohol oxygens bound.
  5. Quemist

    Alcohol Tolerance Poll

    Alcohol is actually the only thing that helps me feel normal again or tolerate crowds. I hate that that is the case because many think that if I'm sick I shouldn't be drinking. I can talk, move, socialize- it's hard to do that without alcohol.
  6. Quemist

    If you could write a question for an ME/CFS survey, what would it be?

    I'm considering compiling a survey to quantify some symptoms of ME/CFS. What oddball questions would you ask if you could ask anything?
  7. Quemist

    Patent for "new" meds used to treat ME debilitating fatigue

    Looks like they're trying to find another patent use for antidepressants.
  8. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Has anyone who was an actual participant of the PACE trial ever shared their experience?
  9. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    I knew going into this that it was going to be a controversial thread. I wanted to show some that shying away from exercise shouldn't be the first reaction; it may be possible to do very moderate and light exercise in such a way that wont' damage you. That doesn't go for everyone, though. It's...
  10. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Yeah... after a couple of days of thinking over everything, maybe this should be recategorized in the "emotional support" section :rofl::bang-head:
  11. Quemist

    Does Anyone Have Math-Only Brain Fog?

    Whoa-- yeah, when I was first realizing I was sick, I was playing scrabble with my grandmother and completely forgot how to count.
  12. Quemist

    Does Anyone Have Math-Only Brain Fog?

    I recently had to retrain myself to do multiplication. Before this, I had made an A all the way up through calc 4 and differential equations.
  13. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Thanks, @Diwi :) YES- insurance. BCBS did a giant survey of the cost effectiveness of the program. Since a huge part is "don't go see any more doctors for your symptoms" insurance companies are saving a ton of money on the terapy. I also still can't wrap my head around the lumped untreatable...
  14. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    @Kina-- I think your concerns are valid. Yes, I'm having a lot of problems with the therapy-- I wanted to share it with the group so that anyone who is refferred may be able to see what some of the good and bad aspects of the treatment are. I've had some good days but a lot of bad days, too. I...
  15. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    I looked up my paperwork and it seems like they used the CCC criteria but also cited the Fukuda critera.
  16. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    There was a questionnaire that they had me take. I came in in a good mood and low pain. When they had met take it three weeks later, my mood and symptoms were wrecked. I also didn't do any better on my physical fitness tests. Occupational therapy was not improved whatsoever. Again, I cant help...
  17. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Oh, I was late every single day. Some days rolled in around 9am. Surprisingly, they didnt' ask me to leave. That was another thing that bothered me- some people that they decided weren't going to finish well were asked to leave. I thought that was one way of cherry picking their data.
  18. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Benzos are now just equally as bad in their eyes. That's what bothered me the MOST. Every day I looked around and thought "seriously, this is where they put people that they're tired of dealing with." It was summer camp for borderline hypochondriacs. I also would not recommend Mayo for...
  19. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Not feeling attacked :) Just exhausted! I knew this was going to be a controversial thread. Just wanted to at least share my story and provide some answers for anyone who might be referred to the PRC clinic.
  20. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    They pushed central sensitization as a main theory really, really hard. They said that most diseases will inherently cause some kind of abnormal response in the brain and therefore lead to more symptoms.
  21. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    I actually was admitted for presumed MS/POTS. Tingling/numbness is one of my biggest symptoms. I was trying my best to be a good patient. I was with my family and every time I asked doctors a question about treatment or tried to suggest something, it started a fight about how I'm too pushy or...
  22. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    This is still true.
  23. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    This really bothered me, too. I thought it was strange that we were all lumped together... making me think it was more brainwashing. Yeah, it really bothered me that they said no doctors. Also, Mayo didn't do an infectious disease workup, which I thought was poor judgement. Also, they didnt'...
  24. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    That's a really good question. I actually think that the physical therapist I was seeing was just as efficient. I also wish I would have stuck with that rather than moving forward with the mayo clinic.
  25. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Desperate is the best way to describe it. I decided just to try everything they told me to do and go from there. The problem is-- if the therapy doesn't work, its deemed as my fault and not theirs.
  26. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Caffeine was allowed, we had to sit in chairs, not recliners. The program was designed to get back to work, but I honstly cant return to my job.
  27. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Oh, as a scientist, this drove me absolutely nuts. Without the evidence of trials, I was very skeptical. i've said it many ttimes since I came here- If it didnt' have the Mayo label on it, this would be considered just another quack therapy. Anecdotes are hard- that was very difficult for me to...
  28. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    I completely agree. This therapy isn't going to be as helpful for people with severe me/cfs.
  29. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    I didn't think the order mattered. They said it was diagnosed with a set of guidelines from the 90's- I'm not sure which ones off the top of my head.
  30. Quemist

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    I did find that I was able to do more. PEM is pretty much expected, you just have to figure out how to maneuver around it more efficiently