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

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  1. apogan

    Never Ask Us if We're Hungry -- The Answer's Always No

    Have your zinc levels checked. I used to have this problem (for years) and finally connected to very low levels of zinc. When I added zinc my appetite returned.
  2. apogan

    Institute of Medicine (IOM) Review of ME/CFS Clinical Definition: First Open Meeting

    Thank you for all your hard work on this, Gabby. It helped so much to see the meeting laid out in this format.
  3. apogan

    First Cidofovir Infusion Done!

    @Ema So sorry I missed you, I definitely slept a lot that day. I tried to peep in a few rooms around me but did not see you. I went solo and everything went fine, but was wiped out the next day, and had to drive home. Won't do that again. I am going to leave you some contact info on your...
  4. apogan

    First Cidofovir Infusion Done!

    Ema. So sorry to hear about your overall results. You did NOT fail. You took on a challenge head on and saw it through. You have been failed by the lack of research on our disease. Not by Dr. Lerner, at least he is trying things. Give yourself a HUGE pat on the back. I admire your...
  5. apogan

    More Demonstrations Being Planned in Washington D.C. for the week of Jan. 26th (2014)

    For all who are planning to attend, God bless you and thank you for efforts. It means so much.
  6. apogan

    2014 STANFORD ME/CFS SYMPOSIUM: Advances in Clinical Care and Translational Research

    @Ember Do you know if there will be transcripts from this meeting that we could share with our own primary care physicians? My doc is still very uneducated about ME. I'd like to share this with her, especially if it can help her advise other patients in her practice. Thanks.
  7. apogan

    A Hidden Life

    I guess our unique perspective makes it easier for us to understand that they are people who we meet who are also hiding something. An illness, anxiety, grief, abuse. In a way we are all the walking wounded. In our pain, we can offer understanding and compassion. In small talk situations...
  8. apogan

    First Cidofovir Infusion Done!

    Ema. I'll be there on the 13th with bells on! See you then. Have a great holiday.:-)
  9. apogan

    Introducing the Blue Ribbon Foundation

    Thank you for your hard and inspired work. Looking forward to the debut!
  10. apogan

    First Cidofovir Infusion Done!

    @Ema Not sure I did this right (above). It was a wonderful surprise to have met you at 'infusion central' aka Beaumont. Thanks for looking me up. I did not love this procedure, but I am a needle phob, so... My arm hurt the whole time, I think the nurse got it in screwy. No side effects...
  11. apogan

    Comment by 'apogan' in 'the boy with the thousand yard stare'

    I think that these questions you have, have been placed there for a reason. I went through a similar crisis of 'is there a God' and after much searching I spoke with a minister who told me that God was actually pursuing me. From there I did a lot of reading and started to attend church...
  12. apogan

    First Cidofovir Infusion Done!

    Ema - I am glad I found you, I also see Dr. Lerner. He started out saying my hv6 was high and my ebv was low and put me on Valcyte. Then when I had some levels of toxicity with Valcyte, he put me on Valtrex. Valtrex made me have chest pains, so he put me on Famvir, which I have been on now...
  13. apogan

    Comment by 'apogan' in 'Valcyte 2013- Week 15'

    Thank you so much for your post. I just started on Valcyte a week ago, so your blog is helping me track my own progress. I was worried as I have not gotten 'sicker' as they say you will, but it looks like you experienced this around the 7th week. It's weird to want to get sicker! I did get a...