• 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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Search results

  1. L

    NT Factor

    My daughter just started NT Factor Energy from Researched Nutritionals: https://www.researchednutritionals.com/store/item.cfm?code=CRN101 This seems to be very similar to the product on prohealth. She has only been taking it for a few days, so it's too soon to know if it will be helpful. The...
  2. L

    ILADS Conference streaming live

    Oops! Looks like today is the only day that will be live streamed. The homepage says all three days, but the live stream page says only today.
  3. L

    ILADS Conference streaming live

    XMRV and CFS related talks tomorrow Dr. Montoya will speak tomorrow at 10 am eastern on Viral Induced CFS. At 4:00 Dr. Joseph Brewer will speak about XMRV and CFS.
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    ILADS Conference streaming live

    The ILADS annual conference is streaming live today, tomorrow and Sunday. Dr. Garth Nicholson is currently discussing treating mitochondrial dysfunction. You can find the live stream and the program for the rest of the weekend here: http://www.ilads.org/lyme_programs/lyme_events.html ILADS...
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    Abstracts from the 1st XMRV Conference

    Another interesting one is abstract P-19, involving families with neuroimmune diseases including CFS and Autism.
  6. L

    Abstracts from the 1st XMRV Conference

    Anti-retroviral trial in patient with chronic lymphocytic leukemia. Here's an interesting one:
  7. L

    XMRV Conference Recap, by Mindy Kitei

    I believe the results Dr. Hanson reported were preliminary results, so they may not be published. She has a bigger study funded by the NIH that is discussed on this thread: http://www.forums.aboutmecfs.org/showthread.php?5977-The-Hanson-(Bell-)-XMRV-Study&highlight=hanson+xmrv I also recall...
  8. L

    Cort: Happy Birthday To You!!

    Happy Birthday! Hope your having a wonderful day.
  9. L

    From the 1st annual XMRV conference

    Recovery Soon, Thank you for sharing your beautiful letter. I think it hits all the right notes. Lesley
  10. L

    From the 1st annual XMRV conference

    Mikovitz: Cheney, Bell, Peterson, Komaroff cohort have similar positivity rates. ETA: The implication is that expert clinicians are diagnosing CFS properly. Other cohorts are suspect.
  11. L

    IC Irony in POTS IV Treatments

    Thanks for sharing this experience. I was considering asking my doctor to add IV saline to my IV antibiotics for Lyme, and you've convinced me that I should discuss it with him. Dr. Rowe also mentioned IV saline in the recent CAA webinar on orthostatic intolerance. Is 5 hours typical? That...
  12. L

    Article: CAA Talks With the Experts on XMRV

    I don't really want to engage in the ongoing argument about the flaws of the CAA, but I do have to disagree with you on this. They sent out a special edition of their email newsletter the day of the PNAS study that mentioned the conference, and mentioned it again in their September...
  13. L

    Thyroid and Blood Pressure Questions

    All of the symptoms you're describing could be related to hyperthyroidism. The good news is a "normal" doctor should recognize this and know how to treat it.
  14. L

    Dealing with noise sensitivity

    Lucinda, I have a much milder problem with noise sensitivity, but I do find that at times I feel like everyone is yelling! I have enough control over my environment that I can usually escape. One thing you might look into is noise canceling headphones. I don't know much about them, but...
  15. L

    new article empowher.com "Lyme Disease: To Eradicate It, We Must Fully Identify It"

    I look forward to reading this. My daughter and I were recently diagnosed with Lyme after years of CFS. I wish it had been properly investigated years ago. Thanks Jody!
  16. L

    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    That is just about the most hateful thing you could say to someone on this forum, and is totally uncalled for!
  17. L

    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    I just want to add my support for Cort. I am so brain-fogged that I every time I post I wonder if what I have written makes any sense. If there is a mistake, we should be a little more forgiving!
  18. L

    Lyme Disease summary: 30% of PWC have Lyme?

    I became ill in 2005 and my daughter became ill in 2007. We were both diagnosed with CFS and POTS. In the past few months, we have both been diagnosed with Lyme. We have started treatment, but it is too early to evaluate the results. As I have researched Lyme Disease, I have been amazed at...
  19. L

    Lyme Disease and XMRV

    There is another short thread on this topic here: http://www.forums.aboutmecfs.org/showthread.php?5688-Lyme-Disease-and-XMRV I came across this on the Columbia University Medical Center website: I found this interesting because it comes from a Lyme doctor. The only comments I had heard...
  20. L

    Journalist asking for leads re science in government

    Dan Froomkin posted a story on Huffington Post today about the delay by the Obama administration in implementing new rules on science integrity in government: The article is interesting on its own merits, but even more important: I plan to write to him. If anyone has been contacting...
  21. L

    Treating Eye Problems

    Just to add a little context, my daughter was having headaches and was a slow worker at school. When she wrote, there weren't proper spaces between words. It turned out she had problems with convergence (eyes coming together properly when going from distance to near) and tracking (eyes moving...
  22. L

    Treating Eye Problems

    Here is another good article about vision problems in CFS. http://www.cfids.org/archives/2001rr/2001-rr3-article02.asp The article is an exerpt from an article in the Journal of Behavioral Optometry. You can see the whole article and 3 more on the journal website...
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    Comment by 'Lesley' in 'Read the Fine Print'

    When my daughter was about 8, she wrote a poem titled "Dream Butterflies". The final line was something to the effect that the butterflies made her fall asleep. We found it recently, and I asked her what she was thinking of when she wrote it. She couldn't remember, but thought she must have...
  24. L

    XMRV Patent application Judy A. Mikovits Francis W. Ruscetti San

    I think that they needed to get the patent application filed before VIP Dx began offering the new test. Hopefully, now that the application has been filed, the testing should be available.
  25. L

    XMRV Patent application Judy A. Mikovits Francis W. Ruscetti San

    CBS - Satire is always risky with this crowd, but I got it and it was hilarious!
  26. L

    Scientists make immune cells in mice that fight off HIV

    Really interesting study. http://news.yahoo.com/s/hsn/20100703/hl_hsn/scientistsmakeimmunecellsinmicethatfightoffhiv;_ylt=AstI7KVsxtz8vkI_AvNQ7f4PLBIF;_ylu=X3oDMTNsYTIxYnRzBGFzc2V0A2hzbi8yMDEwMDcwMy9zY2llbnRpc3RzbWFrZWltbXVuZWNlbGxzaW5taWNldGhhdGZpZ2h0b2ZmaGl2BHBvcwMxMQRzZWMDeW5fY
  27. L

    Nature.com report that Alter paper reviewers want "additional studies"

    I took this to mean that the journal's peer reviewers have asked Alter's group to do additional work prior to publication. The conflicting CDC study basically lead them to seek additional assurance that the study's conclusions are correct. This is consistent with what has been written...
  28. L

    CDC XMRV Retrovirology Study on CFS Published

    http://www.cfids.org/xmrv/070110study.asp
  29. L

    Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper

    Thanks for posting this as a separate thread. It isn't getting the attention it deserves.