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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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  1. julius

    XMRV cure

    Right now, there is no retrovirus (or even virus for that matter) that can be cured completely.
  2. julius

    Rumor: 2 patients died on HIV drugs

    So would Judy, and Coffin....and everybody. How irresponsible would it be to know that ARV's are killing ppl with XMRV, but not send out a warning. I'm sure keeping silent on this would be a criminal offense...and a very serious one. We absolutely would have heard about it.
  3. julius

    CFIDS Report on the 1st XMRV Conference!

    Hey Dr. Oui, I thought you meant that the fact that they are genetically different was meaningless. I agree that it's not important that it's called X or P. But it is useful to be aware that it is not the single, undifferentiated virus that it was thought to be a year ago. Given that...
  4. julius

    Rumor: 2 patients died on HIV drugs

    During the Q and A we would have picked up something if this was the case. I don't think Judy would have been pushing for ARV trials like she was.
  5. julius

    CFIDS Report on the 1st XMRV Conference!

    at the moment its not known whether it's immaterial or not. It's probably best as we move forward that new researchers and new studies have all available information. Then it will be easier for them to get this all sorted out.
  6. julius

    Dr. Byron Hyde's Comments on XMRV

    Just a comment. I saw that interview. It was not too long after the Science paper. It was during a conference that he and Dr. De Merlier both attended. DeMerlier also did an interview with the same program. In his interview De Merlier had pretty much the same to say about XMRV. That he was...
  7. julius

    Article on the Spanish XMRV studies

    This is a bit off-topic, and probably not of interest to many people here....but I thought I'd post it anyways. This discussion on B-cells just gave me a huge eureka moment. I have long known that cannabis offers me significant relief from my symptoms. It's not the 'high' that does it (I...
  8. julius

    A review of EVB and CFS by Dr. A Martin Lerner

    Wow, from ready for hospice attending college. That's something.
  9. julius

    A review of EVB and CFS by Dr. A Martin Lerner

    If this is right it is earthshattering news. Or am I reading it wrong? The link to the review doesn't work. ETA: What is the best way to get tested for these? I am Canadian and I don't know if we have the correct tests available up here. Would I have to have it done by VIP or something?
  10. julius

    My Response from the UK Secretary of Health on XMRV

    Sounds like a typical PR / BS response to me.
  11. julius

    Treating XMRV and herpes viruses simultaneously

    This will make it more difficult to prove that XMRV causes CFS. People feeling better while taking Raltegravir may only be experiencing relief from herpes viruses, rather than XMRV. It actually makes Coffins argument stronger, that we should wait for better measures of XMRV titers.
  12. julius

    XMRV infection rate points to cofactor not sole cause

    Well, I think CFS is caused by leprechauns. Why else would CFS patients like rainbows, and pots of gold? I know there is no study to prove it, but theres no study to disprove it either, so obviously it's true. The mind is like mojo...if you don't use it, you lose it.
  13. julius

    Article: The Times They Are a Changing - CAA Nominates Distinguished Researchers To F

    you could even take Dr mellors point further and say that all the treatments we take add to the heterogeneity of the disease. For instance,some of the variety in immune profiles we exhibit could be a result of the immune modulators we take. Someone taking reishi supplements might have a...
  14. julius

    Article: The Times They Are a Changing - CAA Nominates Distinguished Researchers To F

    The important point is that they accepted the nomination. This shows unequivocally that prominent researchers are willing to associate themselves with this now. So far we haven't really been fighting a war of facts. If we were, then CFS would be acknowledged to be a physiological disease by...
  15. julius

    call for papers in special XMRV issue of "Advances in Virology" ...

    I've never heard of Hindawi before. Is it a well known journal? Does anyone know anything about it. Regarding Mclure, her involvement raises a lot of questions. I have to say though, that if she hadn't got the public (and private) lashing that she had from the beginning of this, she could...
  16. julius

    Is this for REAL: CHANGING LIFESTYLE CHANGES GENE EXPRESSION?

    I haven't read his work, but I believe when he talks about gene expression he is talking about epigenetics http://en.wikipedia.org/wiki/Epigenetics. i love this little bit from the Edge article; In 1995, I had a conversation with the Administrator (director) of Medicare at the time. In that...
  17. julius

    Lancet editorial: Chronic fatigue syndrome: going viral? (avail. online Sept 16)

    They have their fingers stuck in a couple other places too!
  18. julius

    HIV/AIDS Denialism

    I think the idea is that HIV is an opportunistic virus. It's the same thing that's being discussed right now about XMRV/CFS. -Do we have CFS (AIDS) because we have XMRV (HIV)? or -Do we have XMRV (HIV) because we have CFS (AIDS)?
  19. julius

    From the 1st annual XMRV conference

    I was wondering that myself when I read it.
  20. julius

    'Natural' antiretrovirals?

    I just found this very interesting work, I can't see it anywhere else on thus thread so I will post it. It's a very long document, so I will just post the title, authors and link here. REVIEW ARTICLE Naturally Derived Anti-HIV Agents Kaleab Asres1, Ameha Seyoum1, Ciddi Veeresham1, Franz...
  21. julius

    'Natural' antiretrovirals?

    As an integrase inhibitor, it could be used as a 'poor man's' substitute for raltegravir in a HAART regimen. Ralt is the most expensive (by a huge margin) of the three so far shown to be effective. Now I am debating whether to start trying this, or to wait till more is know so as to avoid...
  22. julius

    'Natural' antiretrovirals?

    Chrysanthemums http://www.ncbi.nlm.nih.gov/pubmed/14598216 These can easily be found at Chinese apothecaries, and are very cheap. They make a tea that some people find quite pleasant. They are also easy to find in pretty much any garden you look at. These may not be C. moriflorum, but I...
  23. julius

    Obtaining the ARVs now/soon?

    I haven't done a lot of looking at prices, but I just came across this article, http://www.avert.org/generic.htm Basically, it is saying that ARVs in first world countries run around $10 000-15 000 a year. But the same drugs bought in 'developing' countries are as little as $88 per year(!!!)...
  24. julius

    Myra McClure (On now)

    Because the results of the negative studies are zero-zero. That couldn't be the case if it were just a cohort issue. The only explanation that fits with all the facts is collection and processing. And it is, in fact, the explanation that Mikovitz and (blood working group guy, forget name)...
  25. julius

    Outrageous comment by Dr John Mellors - Expert in Infecious disease & HIV/AIDS

    I think that study is more about using pig parts for organ and tissue transplants, not ingesting pig parts. And as someone pointed out, the Dr. referred specifically to injections (parenteral). So neither really addresses his specific concern.
  26. julius

    XMRV Conference Recap, by Mindy Kitei

    Plus they looked at three groups; sick, healthy and recovered. That should be an interesting result.
  27. julius

    XMRV Conference Recap, by Mindy Kitei

    Thanks. Just the stuff I wanted to hear about. Just a note, in the section on Eric Klein, you mention another human RV, HTML, but I think you meant HTLV.
  28. julius

    Do Remissions Give Us Any Clue That This is Treatable?

    I think we all need it right now. :Retro eek:
  29. julius

    Do Remissions Give Us Any Clue That This is Treatable?

    They're all people who are POSITIVE for XMRV. So, in that sense, XMRV infected people with a fatiguing illness can experience remission.
  30. julius

    Do Remissions Give Us Any Clue That This is Treatable?

    And 7 out of 100 experienced, at least once, what they would consider 100% remission.