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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. Judee

    UARS and ME/CFS

    Tiredbill hasn't been around for a while but he talks using an adjustable CPAP some in this post: https://forums.phoenixrising.me/threads/i-am-having-the-best-day.55573/
  2. Judee

    Dr David Tuller: Guardian Columnist George Monbiot Discusses His Scathing Critique of the “Biopsychosocial” Approach to ME/CFS and Long Covid

    That says it all right there. Glaring conflict of interest for sure.
  3. Judee

    Iv saline treatments

    You don't think that iv could be tainted? I know there was that doctor in Tx who tainted the ivs but wonder if someone would copycat. ??? I'm a bit paranoid these days about things like that. Or maybe it's old stock even and not tainted but causing problems because of that?? I don't think it...
  4. Judee

    Doctors Frustration Thread

    When I asked Perplexity.AI if LDN expires soon, it did give short dates but then said, "Naloxone, a related medication, has been found to retain over 90% of its potency even 30 years past its expiration date in some studies.3 This suggests LDN may also have a longer shelf life than the printed...
  5. Judee

    Comment by 'Judee' in 'Medical update'

    I'm sorry but in my opinion that was a cop-out on her part. It would have been better and more honest for her to just admit that she's feeling overwhelmed with what she's watching you go through rather than say something that's really rather cruel. I don't think it's another person's call to...
    • Judee
    • Blog entry comment
  6. Judee

    Doctors Frustration Thread

    It's just that they cannot comprehend that a disease could be this bad. They won't ever either unless they get Long Covid and it develops into ME/CFS. Sadly, there is no way to describe this experience sufficiently to someone who has not been through it. Truly, the only doctors who kinda...
  7. Judee

    BPC 157 side effects

    Why don't you just try lowering your dose...perhaps 125mcg BID (or even less) instead. Maybe the 250mcg was your "loading dose" and now you've topped off the tank so to speak and only need a lower maintenance dose now. Idk. ??? Just a thought.
  8. Judee

    What do you sit on? My butt is so painful!

    I wonder if you folded a down comforter multiple times and sat on that if it would help. It might get pretty warm in the summertime though.
  9. Judee

    Prayer request for SSDI court date April 10th

    Praying you get approved.
  10. Judee

    Prayer request for SSDI court date April 10th

    Praying for you and your case today.
  11. Judee

    Comment by 'Judee' in 'Medical update'

    Aww, Hon. This is so disheartening. I'm so sorry. Praying for your situation. Can they arrange for a nurse to give you an IV at home? Are they going to issue you an oxygen concentrator? I know. Maybe you won't be able to answer right now and that's okay because you need to rest. We're just...
    • Judee
    • Blog entry comment
  12. Judee

    Doctors in and around London, UK

    Hey, hi!!!! I was wondering the other day how you've been doing. :) Hope you're doing okay.
  13. Judee

    Comment by 'Judee' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    No that's okay. I'm just glad you decided to do a new blog post because I was starting to have a hard time finding this one. :) So thank you!!!!
    • Judee
    • Blog entry comment
  14. Judee

    Comment by 'Judee' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    I love this picture of you. That and the one you posted once with you in a tuxedo outfit and your little blond daughter standing with you. :)
    • Judee
    • Blog entry comment
  15. Judee

    How do I decide whether my amalgams are an issue?

    Because it's an interview, not a study or research paper. He has a PhD in Chemistry-Biology and was a professor at the University of Kentucky (now retired). He did research projects while there. Until he started saying mercury should be suspect in Alzheimers he was also getting NIH grants...
  16. Judee

    Reduced Fatigue Symptoms with Amifampridine

    Hey, that's a good link too and nice that it's short since most doctors don't really want to read long papers. :) Thank you, @Dude !!
  17. Judee

    Reduced Fatigue Symptoms with Amifampridine

    @Dude, sorry for the thread sidetrack but can you tell me where you got this quote? What study? Can you link it for me? (I did try to find it on my own as well.) I'm asking because I had a tilt table test last week and they did a QSART test first which involved applying acetylcholine to my...
  18. Judee

    Comment by 'Judee' in 'Beat the Heat / Beef Stew / Toppings on the Street'

    I'm glad for the update. Sorry about the surgeon and what you're Mom is going through. Hope your ex is hanging in there too. It's so hard to transition to a new job. Can I ask, did you splice two pictures together for the top two pics? My brain just can't figure them out otherwise so I'm...
    • Judee
    • Blog entry comment
  19. Judee

    Comment by 'Judee' in 'I think it's over'

    It's been really hard knowing you're doing your best to watch you go through all this. I'm sorry. Like others have said, please keep coming to PR because so much of what you're experiencing is so rough.
    • Judee
    • Blog entry comment
  20. Judee

    How do I decide whether my amalgams are an issue?

    But maybe not. Here's from Dr Boyd Haley VIDEO and VIDEO and VIDEO. (Unformatted transcripts attached below because I know you cannot watch videos on your computer.)
  21. Judee

    anyone know an herb to reduce adrenaline?

    I don't know if it reduces adrenaline but cordyceps make me feel calm. I just open a capsule and put a little in my coffee once in a while.
  22. Judee

    Sanctification

    And being washed and made new.
  23. Judee

    Prayer request for SSDI court date April 10th

    Praying for you to have perfect peace about the situation and that the Lord will go before you and allow you to be fully approved. In Jesus' Name. Amen.
  24. Judee

    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    Can you get a headgear flashlight (like miners use) so you have it if the power goes out again? Or maybe an emergency back up light that goes on automatically if the power goes out? I have flashlights everywhere in my house but they would be hard for you to carry maybe while using crutches.
  25. Judee

    Methylene Blue -- The "Perfect Supplement" For ME/CFS (?)

    People with ME have to be because there is too much of a chance of causing a major set back, even a permanent one. Not everyone responds to these things the same. We see that all over this forum. So low and slow is always the best way to trial things. If no negative reactions then increasing...
  26. Judee

    Autopsy Options

    Older thread but I wonder if they are still looking for ME/CFS deceased to be donated and how would we arrange that with them: https://hhv-6foundation.org/all/hhv-6-found-in-postmortem-study-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome
  27. Judee

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    They did some other autonomic testing too (QSART testing). I assumed they would ask me to take it off anyway for some of that. Afterwards looking back, I think it would have been in the way.
  28. Judee

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    I'm frustrated with this Garmin watch. I left it at home to go for a tilt table test. I had been running at 5-8 on the Body Battery reading for almost a week beforehand because I had to go off my Metoprolol in advance of the testing. However, when I got back from the testing and put it on BB...
  29. Judee

    ACTH getting lower and lower, but can't test hydrocortisone

    @judyinthesky, @sunshine44, have either of you tried licorice? You have to be very careful with it because it can lower potassium levels but they make little pure licorice candies (no other ingredients but licorice) similar to the ones that Ken Lassessen says on his website have improved some...
  30. Judee

    Dr. Lonsdale's 100th birthday, write your greetings!

    Do you know how we view all the greetings? It would be nice to read them. Plus, I posted mine but hadn't logged into Google first and wanted to make sure it went through to him.