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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. spindrift

    Detection of Mycotoxins in Patients with CFS

    Really don't wanna scare the heebee jeebees outta anyone, but here are some things I am paying attention to: I am the third generation in my family to have ME. My grandma died of "organ failier" at 75, she had every ME symptom in the book. My mother, who also had ME symptoms, died of benign...
  2. spindrift

    Detection of Mycotoxins in Patients with CFS

    My environmental medicine doctor knows that I "medicate" with aspartame. She never commented if she thought it was good or bad. Then again, I never asked. I believe there is just no research on it to make a statement of what happens on the long run.
  3. spindrift

    Detection of Mycotoxins in Patients with CFS

    Just sending a big hug to JCamp.
  4. spindrift

    Detection of Mycotoxins in Patients with CFS

    Thanks for the feedback. Interesting that someone else is getting more relief from the aspartame than from phenylalanine supplements. *slurps on Diet Coke* I really haven't looked into the science of why it works though, I just know it does. It can turn a miserable day into one where I can...
  5. spindrift

    Detection of Mycotoxins in Patients with CFS

    Skiii, zeolite and chlorella are two other sequestering agents that my environmental medicine doctor recommends. Also, while not a sequestering agent, I get great relief from phenylalanine. I have always wondered why drinking Diet Coke, unlike drinking regular Coke, makes me feel immensely...
  6. spindrift

    Detection of Mycotoxins in Patients with CFS

    Hi everyone, I'm the patient Roy referred to. I have been following the thread but not posting because I am preoccupied trying to find a living space that works for me. Living in car right now. I plan on joining in on the conversation once I find a place that works. Don't hold our breath...
  7. spindrift

    Comment by 'spindrift' in 'In Fifteen Years'

    Thanks for your wonderful thoughts, Laurel. I really needed some inspiration today and you gave it to me.
  8. spindrift

    You Won't Believe What Else King's College Researchers Can't Find!

    Anastasia tells Andrea a secret: http://www.youtube.com/watch?v=SwW1MtjGhFI&playnext_from=TL&videos=IKZAOYvHJQI
  9. spindrift

    Do you have crimson crescents?

    judderwocky, A warm welcome to the forum. I always enjoyed your posts on DS and am happy to see you found your way here. Smiles, Spindrift
  10. spindrift

    CDC replication study delayed in order to prepare a press release?!

    Subtr4ct, I think their website is under construction. Their new voice mail refers to the URL. So it still belongs to them.
  11. spindrift

    Comment by 'spindrift' in 'I can't drive 55*'

    Just keep rollin' Brown-eyed Girl :winking:
  12. spindrift

    VIP Dx Culture Test Poll For A LATENT Infection

    I feeling a bit better about it now. I knew I would be taking a chance for a possible false negative. Gerwyn saved the day for me by saying if I am XMRV negative then he is Simon Wesseley. Now who needs blood tests? :winking:
  13. spindrift

    Comment by 'spindrift' in 'Chaos, dissension, control issues and cruelty'

    Maria, that was a very touching way of expressing your thoughts. Cort, since the last battles on the forum have started many members have been trying to put in their thoughts in in their own style for the better of the forum. I have not found the style of the members more offensive than the...
  14. spindrift

    VIP Dx Culture Test Poll For A LATENT Infection

    XMRV negative by culture VIPdx :worried:
  15. spindrift

    Watch CFSAC meeting online Monday 9-4 EST May 10

    Yes, I have been going way off topic. I will open a new thread.
  16. spindrift

    Watch CFSAC meeting online Monday 9-4 EST May 10

    My intention here is putting together constructive thoughts and I hope that you in no way feel that I am arguing with you. I see a difference between emphasizing something e.g. * , bold or I and trying to draw attention in the sense of "look here please" as in "waving to be seen from far away"...
  17. spindrift

    Watch CFSAC meeting online Monday 9-4 EST May 10

    The problem I see here is that people often use larger font size to draw attention to something in the sense of highlighting it and if we just interpret larger font size as shouting we will be doing a lot of people wrong. In my personal interpretation Wilddaisy was trying to draw attention to...
  18. spindrift

    Watch CFSAC meeting online Monday 9-4 EST May 10

    Martlet as far as common Internet etiquette goes, using capital letters is shouting and font size has nothing to do with that. Also as others have correctly mentioned font size is not regulated by forum rules. For many members a larger font size is actually easier to read. It is offensive to...
  19. spindrift

    New $5Million Tax Credit for Small BioTech Announced

    Hmm... I think WPI is exempt from taxes given they are a non profit. But maybe a company they are working together with could make use of it.
  20. spindrift

    CFS Internationally

    Wow those are great links. I hope some people can find the help they might need there, at the very least I can use them to promote the sock project once I get over this flu. Still would love to here more from people in other countries.
  21. spindrift

    Comment by 'spindrift' in 'incoherent babbling watch at your own risk'

    Maria, Those pics in your album are sooooooooo cool. Did you take them?
  22. spindrift

    Do you have crimson crescents?

    :tear::tear::tear:: She must have seen the pic of my stuntman in post #32
  23. spindrift

    MLVs(XMRV) VIRUSES ALL INTEGRATE INTO GENE SWITCHES

    I am overwhelmed by the decision, can I just have a lollypop instead?
  24. spindrift

    Do you have crimson crescents?

    Camas, that is a masterpiece of photography. I tried getting a pic of me but holding my tongue down, holding a flashlight and trying to take a pic required more hands than I have. This was the part where I had to replace myself with my stuntman :winking:
  25. spindrift

    Anyone Tried NADH for Energy?

    I also have very good results in cognitive improvement with the NADH 10 mg sublingual taken in the morning before I eat. To save money I buy the 20 mg and take a half one each morning. Buying 4 packs at time brings me to a little over $11 a month which is well worth it. One of the best things I...
  26. spindrift

    Do you have crimson crescents?

    Hmm..... I have always wondered why anyone would want to become a dentist. This puts it into a whole new perspective.
  27. spindrift

    Do you have crimson crescents?

    I have them as marked blue (not the red part) in post # 6 . I tried getting a good pic but my tongue is too long, it keeps getting in the way :Retro biggrin:
  28. spindrift

    MLVs(XMRV) VIRUSES ALL INTEGRATE INTO GENE SWITCHES

    (((((((((((((((Dr. Yes))))))))))))))))))) we all still love you.
  29. spindrift

    MLVs(XMRV) VIRUSES ALL INTEGRATE INTO GENE SWITCHES

    You mean like homo sapiens getting more brain? :innocent1: :winking:
  30. spindrift

    Wikipedia XMRV

    I am totally wiped out at the moment, but did want to at least say THANKS for explaining that.