• Welcome to Phoenix Rising!

    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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Search results

  1. M

    I get a different PEM

    @eddyrms97 re high lactic acid. I have had this too. I was told to take 1tsp of sodium bicarbonate (baking soda NOT baking powder) before bed in a glass of water. It sounds ridiculously simple for a lot of reasons. It made a huge difference in reducing stiffness and malaise. The operational...
  2. M

    The most controversial/ridiculed/discredited/dangerous treatments out there.

    I would add graded exercise therapy GET to this list, along with medical gaslighting as harmful therapies
  3. M

    What is the best sleep medication for CFS patients?

    Progesterone and melatonin before bed
  4. M

    New wearable that tracks blood flow to the brain

    I haven’t found an obvious correlation between any of the metrics and how I am feeling
  5. M

    Interesting observation I made about muscle fatigue in my case (and possibly CFS in general)

    @borko2100 nice observations, which agree with my own. And hence, I got an electric bicycle. That way I don’t get overtired either way. I pedal when I can . 😁
  6. M

    Drenching Night Sweats

    @Matthew_2 I have heard this can be a symptom of babesia. Check out lymedisease.org. Babesia is difficult to treat, but not impossible, I think. (I trust you have had a good work up for hormonal imbalances too?). Good luck.
  7. M

    posible loss of group life insurance coverage

    You might consider asking your doctor to write declarations/letters. It will help your doctor if your husband can advise re what might be important, given the policy. It might also be worth considering that getting a lawyer involved now might ultimately cost less than engaging one later, since...
  8. M

    How to Lay Down and Watch TV sans Neck Pain?

    Try a soft collar? This helps me. I don’t wear it all the time.
  9. M

    Sleep Disturbance after trying probiotics from Sun Genomics

    I categorically cannot tolerate psyllium. And probiotics can make me both better and worse. I find arabinogalactan to be a helpful prebiotic.
  10. M

    Can everybody make a list of things that helped their fatigue?

    Hi Belbyr. Sorry it didn't work for you. It is the case with most diagnoses that they can be wrong sometimes. Example: Heart pain? No, acid reflux. And so on and on. Inspite of the complications of the whole lyme business, there are some who are helped by the diagnoses and treatments, and...
  11. M

    Can everybody make a list of things that helped their fatigue?

    Consider getting tested for Lyme and confections by IGenEx because if it’s positive you can do something about it, even if imperfect.
  12. M

    Can everybody make a list of things that helped their fatigue?

    Low/no wheat High vegetables High quality chicken/fish- no beef (cannot tolerate) Low/no sugars No fruit juices Very Little milk Whole fruit in moderation No junk food or prepared food B multi (v important for me) Glutathione liposomal Selenium
  13. M

    Ron Davis Update

    @Janet Dafoe in case this Itaconate work from Japan is relevant https://apple.news/AJhkrZ8h-Q0WXRaInOFOAWg Kuniyuki Aso et al, Itaconate ameliorates autoimmunity by modulating T cell imbalance via metabolic and epigenetic reprogramming, Nature Communications (2023). DOI: 10.1038/s41467-023-36594-x
  14. M

    Ron Davis Update

    @janetdafoe in case this Itaconate work from Japan is relevant https://apple.news/AJhkrZ8h-Q0WXRaInOFOAWg Kuniyuki Aso et al, Itaconate ameliorates autoimmunity by modulating T cell imbalance via metabolic and epigenetic reprogramming, Nature Communications (2023). DOI: 10.1038/s41467-023-36594-x
  15. M

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    @Atlas why does the injection need to be there? Seems like such a random spot.
  16. M

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

    Is anyone using Fitbit Sense?
  17. M

    Kenny DeMeirleir

    Please provide robust evidence for these allegations. His clinics appear to be current online.
  18. M

    The Nexavir/Kutapressin story: real or fake?

    @BenFromNZ please be very careful with this. You don’t want to be injecting biological stuff that might be dubious…
  19. M

    Poll: Do You Manage to Keep Your Home Tidy?

    @Tammy it is a Roomba and it is great. You can connect it to your phone via internet (ok, someone else did this for me) so you can start it up from wherever you happen to be resting. It maps out your floor plan so eventually it becomes quite efficient with its path. Also, I have a bottle of...
  20. M

    Ron Davis Update

    @Janet Dafoe with apologies above… thank you for the update and all that you do…
  21. M

    Ron Davis Update

    @Janet Dafoe thank you for the upland for all that you do. Will there be a listing of participants posted of those in the upcoming Zoom meetings?
  22. M

    Any Ampligen updates?

    Since Ampligen was approved for CFS in Argentina, has there been data on effectiveness coming from there?
  23. M

    Hydrogen water as a treatment for myalgic encephalomyelitis/chronic fatigue syndrome: a pilot randomized trial (Friedberg et Choi, 2022)

    @Hip thanks for the info. What are the “ fizzy tablets “ ? Thanks
  24. M

    Hydrogen water as a treatment for myalgic encephalomyelitis/chronic fatigue syndrome: a pilot randomized trial (Friedberg et Choi, 2022)

    How do you make hydrogen water?
  25. M

    Hospital appointment experience

    @Emmarose47 good luck
  26. M

    Excellent German video with English subtitles on Long Covid and ME and HELP Apheresis starring Martin of PR.

    @Countrygirl this video isn't available to me. Do you have another link to it? Thanks
  27. M

    Poll: Do You Manage to Keep Your Home Tidy?

    I got a robot vacuum. It changed my life and makes it possible to keep the place in good shape.
  28. M

    Shortness of breath, heavy feeling on left side of chest followed by brainfog and severe fatigue?

    So glad you are being cared for on this!
  29. M

    TMJ (temporomandibular joint disorder) causing CFS, or is it the other way around ?

    @ashram are you sure the giardiasis is gone? I think it can be present for a long time and cause much trouble
  30. M

    Shortness of breath, heavy feeling on left side of chest followed by brainfog and severe fatigue?

    @ChookityPop please see your doctor re heart. It would be a shame not to treat something that can be treated. And good luck!