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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. M

    Anyone have issues with continuous hair loss?

    Thank you all for the information. You are correct that several doctors only tested TSH. There is only one GP who treats autistic children that tested some TH levels and one was too high and the other too low. I cannot recall the levels off hand. He also stated that she had extremely low...
  2. M

    Anyone have issues with continuous hair loss?

    I know this may sound trivial compared to the neuro, cardio-vascular and immune system issues my daughter has experienced, along with everyone on this forum, but does anyone have issues with their hair coming out? My daughters hair has been falling out for over 8 months. Her thyroid was...
  3. M

    *15th July* Dr Lucinda Bateman & Vincent Racaniello - Webinar!

    Thanks for the reply Otis even though I was hoping that there would be a therapeutic vaccine like the ones being developed successfully for some cancers (experimental stage still).
  4. M

    *15th July* Dr Lucinda Bateman & Vincent Racaniello - Webinar!

    Tina or George, Do you know if Coffin was talking about a preventive (prophylactic) vaccine, or a treatment (therapeutic) vaccine, or maybe both? Thanks
  5. M

    big new post from Hillary Johnson

    I too agree and don't know which is more scary - having a retrovirus, or back to having no answers. This could be why Dr. Lerner has some who get better; maybe they don't have XMRV, or maybe it hasn't developed into "full-blown" XMRV (HIV into full-blown AIDS), or maybe the immume system in...
  6. M

    Brain Atrophy Responsible for Depression in People Battling Multiple Sclerosis

    Thank you for posting this article - even though it is scary to think about in regards to ME-CFS too.
  7. M

    xmrv action site

    Great idea Jud, I'm sure this will be well visited!
  8. M

    FDA/NIH Paper will be published

    Thank you so much for pushing and staying on top of this! I hope this time it actually is printed.
  9. M

    Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

    Good point Jenny. The ME-CFS groups do not want to be seen as a crazy mob, and it is easy to understand that research scientists are not very adept with handling the public. Any threatening letters or calls should not be tolerated, and do not help our cause. However, comparisons to HIV (or...
  10. M

    How's the PR this time?

    Great reading Tina and you too get an A++!
  11. M

    Prayer request for Mikovits et al.

    Amen, and please Lord guide them to researching a treatment or cure.
  12. M

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

    The problem is time, and funding. The longer this gets dragged out, the longer it will take for the ‘big’ monies to be designated for research. I know some things are going forward, but we need (and deserve) the government to finally looking at this. XMRV and ME-CFS research must be fully...
  13. M

    CDC XMRV Retrovirology Study on CFS Published

    Thanks bullybeef. This is a great list in chronological order, which clearly demonstrates irregular procedure and possible interference.
  14. M

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

    Correct me if wrong, but I thought a major issue may be that XMRV is able to “hide out” / “in reservoirs,” which is another reason it is difficult to find. HIV was recently found to 'hide' in bone marrow, which may be why individuals have to continue to take RV.
  15. M

    CDC XMRV Retrovirology Study on CFS Published

    Yes Julius; confirmation bias at its best. The CDC found exactly what they set out to find, no XMRV in anybody.
  16. M

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    I agree with you Robyn. I just posted on a thread that was opened regarding vaccines and stated something regarding H1N1, so I will paste it here too: At Mayo Clinic, the spine specialist my daughter saw stated that he had seen about 10 people who had the same type symptoms as her after the...
  17. M

    VACCINES AS POSSIBLE TRIGGERS FOR CFIDS/FM: POST your experiences here!!!

    My daughter had to get MMR, Hep B, and tetanus for school (medical profession). Then around the same time, she started with Guardasil vaccine. Her CFS symptoms too began with a sore throat (which she had not had one in 5 years after her tonsils were removed) and then flu-like feeling which...
  18. M

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Ash is correct. Jspotilla – while I can appreciate what you are saying regarding individuals that do not have medical access having annual paps, I would prefer that in the US we provide poor woman with annual paps and proper tx, not a vaccine. In India, they have banned Guardasil after 4...
  19. M

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Tina you are correct that women that receive annual paps, and are able to get tx if needed. The cervix is like the liver; it can be cut and grow back. I think I read that in approximately 70% of HPV cases the immume system is able to take of by itself anyway. Guardasil is given in 3 separate...
  20. M

    ANP, the link between low blood volume and Сhronic Fatigue Syndrome?

    Thank you - this is very informative
  21. M

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    I agree with you Shelley. My daughter received several required vaccines to enter college in the medical field and late that year received the Gardasil vaccine which we know caused her CFS symptoms. There are hundreds of "Guardasil Girls" with CFS-type symptoms, and many wih seizures. They...
  22. M

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Thank you for this interesting thread. Judderwocky - since you know physics, didn' quantum physics even change some of the "laws" of physics? I think XMRV will prove the same way...the virus does not act like other retroviruses and may change the way scientists will research. Also, I may...
  23. M

    Lyme testing

    I thought that sometimes only a SPECT and/or spinal fluid check was required to obtain a true dx of lyme.
  24. M

    Funny yet serious!

    Hi Stone, I hope you have contacted Dr. Judy/Whittemore Peterson with your family CFS history. You certainly sound like a good case study.
  25. M

    XMRVChronic Fatigue Syndrome and the Blood Supply - Teleconference June 11th

    Thanks JT1024 for attending and we look forward to hearing what was presented.
  26. M

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    I was told there was a 4-week wait list and they will call you to let you know when they are sending it out. I wonder if the 30-days also has to do with them maybe rerunning negatives.
  27. M

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

    To those who asked if HIV was known prior to a blood test, the answer is yes. I remember that I thought my baby would need a transfusion and was very scared because they could not test for HIV yet. This was Dec 1983. The panic was scary so perhaps they are looking for a reliable test first...
  28. M

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

    Could they be holding off due to conflicting findings from the retrovirology group and later discovering in the blood safety study?
  29. M

    German study finds xmrv

    There was also the National Childhood Vaccine Act that protects Pharma companies. Under the National Childhood Vaccine Injury Act of 1986 there was a National Vaccine Injury Compensation Program (VICP) established (not good at links but the path is @http://www.hrsa.gov/vaccinecompensation/)...
  30. M

    Starting Raltegravir

    Jimbob Good Luck! The individuals that have tried drugs and posted, seemed to start with AZT and then add Raltegravir. Will you be adding another drug? I hope it goes well for you.