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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. R

    Mt Sinai recruiting for PEM study

    Happy to share. I don't know exactly when the results will come back- I think they are figuring out exactly how to configure this- but they are committed to giving patients data- the genetics are so complex you need an interview with a geneticist to understand the results. Could be many...
  2. R

    Mt Sinai recruiting for PEM study

    I'm undergoing the study now - I was on the bike for 20 minutes yesterday. I pleaded to run til exhaustion on the treadmill but they've made the decision, and I think wisely, that endurance is a better gauge of daily exertion so intensity is not the goal here. Although they said they would...
  3. R

    Mt Sinai recruiting for PEM study

    I have no idea how seriously this will affect my health- and I don't care- I've been waiting 6 years for someone to do exactly this study and see what's happening after exercise and I want maximum data- which I think will only happen by a big effort- which I plan to give. I'm also really...
  4. R

    Mt Sinai recruiting for PEM study

    I'm in this study. I have requested to exercise as vigorously and for as long as they will allow in order to induce the biggest reaction possible. I want some answers- and I'm hoping this will paint a very big picture for me- and the disease.
  5. R

    Italian director of AIDS Immunopathogenesis disproves Yamamoto's claims on Gc-Maf

    I've been on it for roughly 6 weeks- and although I don't feel any better or worse- my natural killer cell count just went from 18 to 47.
  6. R

    Gcmaf-reactions and side effects

    Update- So far I have taken 5 doses - 1 per week- They were: .25 (severe reaction) .10 no reaction .15 no reaction .20 no reaction .25 no reaction Strange how I severely reacted to .25 on week one and then no reaction to same dosage this week. Cannot say with any confidence there is any...
  7. R

    Gcmaf-reactions and side effects

    Hi All. 2 weeks ago I took my first dose of GCMAF (.25) and had severe reactions which persisted for a little over a week (much worse the first half). The effects hit about 18 hours after the injection. Dr. Enlander suggested I take 2 weeks off which I did. Last night we agreed to try for...
  8. R

    Gcmaf-reactions and side effects

    That sounds about right. I would add "symptom-free," so that say someone drops a medication but still experiences periodic symptoms they did not suffer prior to the illness onset (say, PEM- for example) they are not cured. Even in lesser amounts, or less frequently- regardless of...
  9. R

    Dr. success using higher doses of GCMAF

    Thank you. I think that's a good idea. You're right- it's possible we are using different terminology. I think the word "cure" in the headline of the thread is an eye grabber. His views on whether he believes this is the cure for CFS would be good for us to understand - in addition to...
  10. R

    Gcmaf-reactions and side effects

    This is very inspiring to read. Thank you for the words of wisdom. Hopefully, you will figure out the best dosing for you and continue to improve. You deserve it after the hell you've suffered through.
  11. R

    Dr. success using higher doses of GCMAF

    Cindy, Your story is uplifting and inspiring. The more details you reveal the more I think you and I actually met at his office a couple weeks ago. I wish you continued improvement- and hope from the bottom of my heart that you reach 100% health. For everyone reading these accounts I think...
  12. R

    Gcmaf-reactions and side effects

    I am extremely happy for your success and wish you continued improvement...but Dr. Enlander is apparently telling different stories to different patients. He emphatically told me on Tuesday that this is not a cure - and that yes, there are some patients who have made impressive improvements-...
  13. R

    Gcmaf-reactions and side effects

    good to hear!
  14. R

    Gcmaf-reactions and side effects

    hairloss? I'm really rethinking this whole venture. I'm not seeing a reasonable reward for all the risk. I might sit out til more advances come. I empathize that some people are in pretty dire straights- and I understand going for it no matter what- but I'm not sure for me the potential...
  15. R

    Gcmaf-reactions and side effects

    I didn't need any sleep after the injection. I felt great for 18 hours then the reaction came.
  16. R

    Gcmaf-reactions and side effects

    Thanks Sushi. Yes - 25. I took mine yesterday evening- slept fine- woke up an hour early (5AM) feeling quite well. Then at 11AM- roughly 18 hours after the injection- it hit like a ton a bricks- and still isn't right. Not sure about the risk/reward ratio. Let's see how this week goes.
  17. R

    Gcmaf-reactions and side effects

    I just took my first dose last night (with Dr. Enlander) - .250 ML Feeling pretty bad side effects - intense anxiety, dizzyness earlier in the day. (very unusual for me) Morning started out great - then around 11:30 massive increase in tired, weird feelings. Now- still tired- strange...
  18. R

    Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

    Thanks for crystalizing the essence of this book so clearly. Words can be dissected so literally as to debase and strip them of their meaning - in my opinion you comprehended and communicated the message of this book simply and beautifully. Thank you.
  19. R

    Alcohol-Related Behavior Changes: Blame Your Immune System

    Non-Stop hangover is about the best way I can describe my condition to anyone.
  20. R

    NY Times story on BWG results & Science partial retraction of XMRV study

    No matter how the XMRV controversy shakes down this disease is now being portrayed in a way that is accurate- which if nothing else, is a major accomplishment. Just the clarification of simple fatigue and explanation of Post Exertional Malaise in the NY Times is truly a major milestone. Who...
  21. R

    Two helpful books

    I bought both and am enjoying them very much in concert. Thanks for the suggestion!
  22. R

    Suffering and spirituality 2

    Well said Nielk. Bitterness itself can become a religion if one chooses to focus and preach only on the failings.
  23. R

    Suffering and spirituality

    Fingers Crossed. :winking:
  24. R

    Suffering and spirituality

    Lou- none of that was all too serious in my opinion. We all do it. I think what created a problem afterwards was the denial that anything else was meant by it- which you have honestly clarifed. Clearly, you weren't intentionally jabbing anyone here. Thanks for saying what you did. No...
  25. R

    Suffering and spirituality

    Agreed. Back to the original point: Opportunities to find deeper powers within ourselves come when life seems most challenging. - Joseph Campbell
  26. R

    Suffering and spirituality

    Was it "spiritual" for Nelson Mandela to direct Lovingkindness towards his Apartheid captors- and free himself emotionally in prison? Was it "spiritual" for the Dalai Lama to wish Lovingkindness towards the Chinese after having his home and culture decimated? Was it "spiritual" for Jesus to...
  27. R

    Suffering and spirituality

    Thanks- that was awesome! "It is by going down into the abyss that we recover the treasures of life." Leave it to Joseph to sum up the entire thread in one succinct sentence.
  28. R

    Suffering and spirituality

    Really? I know there are many charlatans causing lots of harm in the world. But real compassion rare? We have very different experiences. Yes. Angry, Sad- whatever. Acceptance is key. As far as "whatever gets you through..." if survival is your only goal then fair enough. But is it...
  29. R

    Suffering and spirituality

    DB- I'm not sure I fully understand any objections to the "How To Be Sick Title" title, but it sounds like you have a history of disappointment with spiritual traditions. It seems perfectly innocuous and refreshingly straight forward, but OK. As for the rules and lists- a further...
  30. R

    Suffering and spirituality

    This view casts illness in it's own direction- and not an empowering one. Returning back to Victor Frankl, the research strongly suggests that finding a bigger meaning for suffering is beneficial and sometimes critical to one's emotional survival. None of that involves blame or a denial of...