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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. J

    Start a List of Doctors who Treat Mulv Related Viruses (Human Gamma Retro Virus)?

    Does anybody know of any doctors in Ohio? I am sitting on 2 XMRV test kits that are waiting for a doctor to sign them. My kids ped will not do it. I am going to ask my son's neurologist this week but I am not holding out much hope.
  2. J

    Targeting The Cause Of Autism: Medicine's Next Big Thing?

    If HIV uses cholestrol to replicate, then I would think we want to have low cholesterol. Perhaps the ASD subjects have low cholesterol because it is their body's natural mechanism to defend itself.
  3. J

    Article: Where's the Beef? The WPI and the NIH

    Here is a link to the NIH peer review process. It breaks it down to the levels of how a grant is approved and even has links to the people involved. Perhaps we should start contacting them and advocate they review and accept proposals relating to XMRV and how it impacts us...
  4. J

    New paper: Apobec 3G reduces infectivity of the XMRV

    Very interesting leaves since Judy stated that the only immune marker associated with XMRV is decreased interferon alpha. http://www.forums.aboutmecfs.org/showthread.php?4524-Dr.-Judy-Mikovits-IACFS-ME-Newsletter-Apr-2010-Q-amp-A
  5. J

    article new york times today

    Nothing new here but glad to see that it is hitting the national news. Thank you for posting this.
  6. J

    Intestinal permeability and evidence of immune activation

    Does this mean that if you clean the gut out, the fungal problems will go away and that it is not the fungal overgrowth that is causing the problem but is a result of the constipation? Am I getting this right? This is important because I am the process of cleaning out my kids gut at the moment...
  7. J

    Virology Blog - Publication of XMRV papers should not be blocked

    Thank you for posting this. I was thinking along the same lines but not able to write is as eloquently as Dr. Racaniello. I just had 4 letter words running through my mind.
  8. J

    Is there a connection between XMRV and HHV-6/7

    Interesting question. My speculation is that XMRV allows viruses to fester or stay active and prevents the immune system from fighting these viruses.
  9. J

    XMRV Article in Chicago Tribune and other papers

    Thank You! Thank You! Thank You Megan! Thank you for pointing out this obvious double standard. I do not know you but I love you. I look forward to you posting some more.
  10. J

    XMRV Article in Chicago Tribune and other papers

    kdp- It is horrible how little CFS is funded. Absolutely horrible.
  11. J

    Spouses, children & XMRV: "Not a strong association..."

    I just watched the video, near the very end, Dr. Peterson said there is not a strong association between a CFS patients and their family members having CFS. My speculation is that the family members may have XMRV but may have different health problems (prostate cancer, autism, etc.).
  12. J

    Telegraph newspaper article on potential Autism test

    Very interesting Rosemary. Thank you for posting this.
  13. J

    Telegraph newspaper article on potential Autism test

    This paper is complete rubbish. From the paper: "When comparing 996 ASD individuals of European ancestry to 1,287 matched controls, cases were found to carry a higher global burden of rare, genic copy number variants (CNVs) (1.19 fold, P = 0.012), especially so for loci previously implicated...
  14. J

    Am I the only one who hopes that XMRV is not the cause of CFS/ME

    I do agree with that. I lost two relatives to MS over the past several years and my friend's mother has had it since the late '80's and is in a nursing home. How she has survived so long is beyond me but she has suffered the whole time.
  15. J

    XMRV Article in Chicago Tribune and other papers

    So Martlet, I am sorry but I am confused. WPI releases a paper in Science showing a relationship between XMRV and CFS. The powers that be do nothing with this. Meanwhile, there is some unpublished data showing 60 percent of ASD children either have the live virus or antibodies for it. This is...
  16. J

    A question about accuracy of an antibody test

    Well, I am confused more than ever. I was looking forward to getting my son the antibody test that is coming out but I now I wonder if I should get tested or my younger son. Perhaps there is a better chance that I have antibodies or my younger son. My oldest son, if XMRV pos., probably has a...
  17. J

    EMAIL THE HEAD OF THE CDC: Dr. Thomas R. Frieden - EMAIL ADDRESS IN POST

    Thank you muffin. I have not heard back yet but I will post when I do. You are so cute btw.
  18. J

    Vitamin D reduces mother to child transmission of HIV

    My kids doctor is also big on Vitamin D. When I did give it to my kids, they are more lethargic than usual (they are usually hyperactive). I must admit that I keep stopping after several days and then start again. Perhaps it is working on my kids and their body it is just overwhelmed at the...
  19. J

    XMRV Article in Chicago Tribune and other papers

    Sorry if I had not read all the comments but I am not feeling well but felt compelled to respond to Mr. Kite. Mr. Kite, I have two children with autism. My oldest also started having grand mal seizures two years ago. He has to be watched 24/7 so that he does not injure himself when he a seizure...
  20. J

    XMRV Article in Chicago Tribune and other papers

    Kurt, thank you for posting this link. I think it is very important that we all respond to this article. I am sick and tired of seeing Dr. Judy M. being attacked like this. She is a great scientist and I do not want to see XMRV being downplayed here. There is a very noticable trend that when any...
  21. J

    XMRV AND ANXIETY DEPRESSION THE anxious Amygdala

    Hi Wendy, my soon has horrible yeast and my doctor said to use probiotics first before starting the anti-fungals because the die-off is going to be really bad. I have been giving him probiotics but the die-off is already really bad and I am wondering if I should do this every other day (and work...
  22. J

    Telegraph newspaper article on potential Autism test

    I think this is great that they may have a potential (and cheap) biomarker for autism. If I knew then what I knew now, I would have had my kids on probiotics (and other treatments) much much earlier. I would love to compare the urine results with ME/CFS patients. I am also thrilled that...
  23. J

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

    Das war lustig!:Retro smile: Yes, that would be great if you could donate a million dollars and have the US win to boot.
  24. J

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

    Well, I am not a big world cup fan (I'm American you know) but if the U.S. wins (which I doubt), I will donate $10 to WPI. Anybody else in?
  25. J

    WPI Facebook page says this about tommorrow

    Thank you Jill! I can't wait to see this.
  26. J

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

    Well, I told my WHOLE family and some friends about a press release coming out of the CDC on their replication study. Please pass the bag please, I need to put it on my head.
  27. J

    Acutely transforming RV expressing Nras generated by XMRV-infected fibrosarcoma cells

    Same here. I was hoping that Natasa or Gerwyn would help us out here. My interpretation is that XMRV allows other viruses to fester. I am probably WAY OFF. I am very prejudice since I have been focusing on ASD kiddos having higher rates of other viruses. I have a one track mind. Again, Gerwyn...