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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. mattie

    CAT Scan - Contract Dye?

    I feared the contrast dye too, But did not give me any problems.
  2. mattie

    40Hz sensory gamma rhythm treatment

    if you have apple music:, here’s a 40hz album:
  3. mattie

    Jen brea. Interesting interview

    I had cci fusion surgery in 2019. It did not cure my ME CFS nor Dysautonomia. But I have improved from severe to moderate.
  4. mattie

    Propranolol antiviral against covid19 [Study] Mar 2023

    https://www.medicinenet.com/metoprolol_vs_propranolol/drug-vs.htm
  5. mattie

    Propranolol antiviral against covid19 [Study] Mar 2023

    Can I ask what dose you are taking Murph? I’m on 2x 10mg for Pots. It helps a little bit..
  6. mattie

    Hope I’m not late to the party - long Covid proves to be physical (article)

    Here’s the complete article in PDF And direct link to article: nature.com
  7. mattie

    2023 Paper on Long Covid and EBV published in Nature

    https://www.nature.com/articles/s41467-023-44432-3
  8. mattie

    Where can you find rating fot the severity of your CFS.

    https://forums.phoenixrising.me/threads/the-mild-moderate-severe-and-very-severe-levels-of-me-cfs.60746/
  9. mattie

    Video: "Vegan diets dont work"

    Guess who sponsored that video….
  10. mattie

    Dr DaveTuller: A Day in the Life of Anil van der Zee

    :cry: Thank you Anil. Beautifully made.
  11. mattie

    Does anyone here see Dr. Kenny De Meirleir in Reno?

    Indeed!
  12. mattie

    Vagus nerve stimulation - Nurosym device

    Nope, It's 1990 NOK = 180,96 EUR = 191,54 USD
  13. mattie

    BCG vaccination hypothesis

    Should be fairly easy to test. In the Netherlands you can get the vaccine when travelling to countries with high tuberculosis incidence.
  14. mattie

    Should we be vegan? Short answer: No

    Plant-based diets and long-term health: findings from the EPIC-Oxford study: https://www.cambridge.org/core/journals/proceedings-of-the-nutrition-society/article/plantbased-diets-and-longterm-health-findings-from-the-epicoxford-study/771ED5439481A68AD92BF40E8B1EF7E6
  15. mattie

    Bacillus subtilis probiotic may eliminate Staphylococcus from the gut and the nasopharynx

    Just ordered from supersmart directly: https://www.supersmart.com/en/shop/immune-system/bacillus-subtilis-supplement-0700
  16. mattie

    Looking for noise canceling headphones

    Airpods pro are awesome. I use one of them when side sleeping. Must fit your ears, they are not for everyone. Airpods max even better, but only when upright. Great sound great NC. Expensive but sometimes on sale. QC 35 also good NC but sound quality not as good.
  17. mattie

    Trazodone causing palpitations and feeling generally awful?

    Yes. Palps and bad hangover. tried same dosages as you. Did not help insomnia either.
  18. mattie

    Dr Markov CBIS Theory of ME/CFS - General Discussion

  19. mattie

    My fatigue is gone. My poisoned feeling, gone. PEM, what PEM?

    Cumin is not yellow. Turmeric is. here is the link to the mentioned thread started by @Wishful
  20. mattie

    Fatigue and hypocretin

    Translated by google: https://translate.google.com/translate?hl=&sl=no&tl=en&u=https%3A%2F%2Fhelse-stavanger.no%2Fom-oss%2Fnyheter%2Fslik-beviste-de-at-fatigue-ikke-er-latskap
  21. mattie

    ME/CFS Research: Herpes Autoimmune Spectrum Disorder

    Sorry if this has already been answered somewhere, but I could not find it answered in this thread when @JoeS asked the same thing: Sodium benzoate + vit. c = benzene. How can ingesting 1000 mg sodium benzoate / day be safe? By avoiding all sources of vit. C ?? @joshua.leisk...
  22. mattie

    What has helped you with sleep/insomnia - post links

    Doxylamine succinate (Kirkland sleep aid for example) really helps, but tolerance develops quickly. I go on and off it. Sleep still not refreshing though. Also not sure about long term safety of the stuff. Not much data available on this. I usually take 12.5 mg (half a tablet) Also tried...
  23. mattie

    Tracking CCI / AAI MRI & Treatment outcomes

    Yes you may. Not great. Whole story is in this thread. Bit of a long read though. Short version / summary can be read here .Even shorter version: CCI surgery (C0-C2 fusion) did not improve my ME / dysautonomia symptoms.
  24. mattie

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I would not call it maximum end positions, it was maybe 80-90% of that. For me it was doable. If I recall correctly it was about 8 minutes per position. Dr. Schulze mentioned the AAI, not the CCI.
  25. mattie

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Yes. https://www.medserena.com All clinics are listed on bottom of that page. I went to Hannover myself. But they all use the same upright scanner.
  26. mattie

    What is the reason some patients end up in a wheelchair? Neuropathy?

    Orthostatic intolerance. Exercise intolerance. Causes: unknown
  27. mattie

    Tracking CCI / AAI MRI & Treatment outcomes

    https://www.medserena.com/kontakt/ You can find all Upright MRI clinics in Germany at the bottom of that page. Diagnosed by Dr Gilete in Barcelona. I would recommend to read as much as you can on this subject before moving forward.
  28. mattie

    Benzo R'X Doctors in California?

    it is definitely not the same horror story for everyone. https://forums.phoenixrising.me/threads/benzos-for-chronic-fatigue-syndrome-the-klonopin-benzodiazepine-survey-results.59919/
  29. mattie

    Tracking CCI / AAI MRI & Treatment outcomes

    That's 3 questions ;) No signs of virus/corona. Did not push myself. Not overnight but gradual decline in about 4 weeks. I guess an important question is: Did the surgery resolve PEM? In my case it did not. I "only" improved from severe to moderate and temporarily so. Moderate ME still means...
  30. mattie

    Tracking CCI / AAI MRI & Treatment outcomes

    Correct. I obviously never said anything like that about Jeff or Jens case. Only speaking for myself here. I also would never compare my case to theirs. And indeed I was diagnosed based on much looser criteria. Yeah it would be kinda nice to base invasive surgery on proper diagnosis. Not going...