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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. Ellkaye

    David Tuller: Trial By Error, Continued: More Nonsense from The Lancet Psychiatry

    So QMUL may lose the appeal? If so they ll give access? Is that the state of play? Have they won the appeal?
  2. Ellkaye

    Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms

    Orthostatic Intolerance is a cardiac complication i believe. Different to ME?
  3. Ellkaye

    Viral overgrowth: Gamma-GT

    Very interesting. Should be part of standard tests?
  4. Ellkaye

    CDC report: Black-legged tick in twice as many US counties as in '98

    Are there sprays for the body to kill ticks?
  5. Ellkaye

    Adrenal Fatigue Link to Low Testosterone?

    It can be tested in the blood. I think it s best to get tested a few times These things can be indefinite
  6. Ellkaye

    James Coyne talk at Stormont in Belfast, Feb 9 - for professionals - tell your MLAs!

    The Irish ME trust have consistently served the community. Such strong groups can hopefully help make the difference
  7. Ellkaye

    David Tuller: Trial By Error, Continued: More Nonsense from The Lancet Psychiatry

    So where are we with this? I thought a court had ordered them to make the data public? No?
  8. Ellkaye

    VIP Dx/WPI Combined PCR/Culture Poll for ACTIVE and LATENT Infections

    Hopefully a new company will bring out a new test for XMRV Ruscetti/Mikovits HGRV. We need it urgently
  9. Ellkaye

    New study - 8 SNPS corresponding to CFS/ME symptoms

    Can this be used for improved/'cured' patients?
  10. Ellkaye

    Substantial relief from alcohol

    Think it s very individual. Basic principle though is that alcohol is toxic. Not to be mixed with medications. Sensible use..
  11. Ellkaye

    Feeling stuck, sick and need some help please

    This sounds really complex. I d get a few different doctors' opinions including an endocrinologist
  12. Ellkaye

    Potassium burns

    Potassium tests are done by cardiologists for electrolyte testing i think. For people with cardiac issues along with cardiac enzymes. There are goods that contain potassium
  13. Ellkaye

    Fluoride Poisoning: Holy Crap!

    So we shouldn't use fluoride toothpaste?
  14. Ellkaye

    My Experience on AntiRetroVirals

    Looks excellent indeed. It will let the cd4 cells breathe better
  15. Ellkaye

    My Experience on AntiRetroVirals

    Cos u take a different arv in the exact same class as it?
  16. Ellkaye

    My Experience on AntiRetroVirals

    Is viread on the cards for you?
  17. Ellkaye

    My Experience on AntiRetroVirals

    PEM improved within the first week on viread along with inflammation/pain.but as true ME patients well know they can distinguish PEM with expertise and so believe me,the PEM disappeared. Then over the months viread alone lost in effectiveness. Hence i added/now add the raltegravir every ten days...
  18. Ellkaye

    My Experience on AntiRetroVirals

    I have no ebv or cmv. Never been infected at all. There are cases of people having never been infected. So zero titers as never ever infected. Rare but possible. So i learned. Only hhv6 is positive sometimes on sometimes off (flu season and rv reactivates it no doubt...?). But unspecific as that...
  19. Ellkaye

    My Experience on AntiRetroVirals

    Ok,cos two out of three of the arv's against xmrv are needed i believe. Think it was an ila singh paper.
  20. Ellkaye

    My Experience on AntiRetroVirals

    Viread?
  21. Ellkaye

    My Experience on AntiRetroVirals

    (1) i take both viread and raltegravir. The second one had to be added in to keep the effect up. Retroviruses cause nasty inflammation, indeed. (2)my cd3,4,8 counts multiplied x2.5 on the two arv's.Most of my herpes virus tests are negative or only intermittently weakly positive(hhv6) and so as...
  22. Ellkaye

    My Experience on AntiRetroVirals

    There is definitely a lesson to be learned here. I am as cured as is possible of ME with antiRETROvirals. The incovenient truth is hard for some. When it's so controversial only very few are right. Mikovits and Ruscetti were right. Right on. The Lipkin study was a joke. Simon Wain Hobson WHERE...
  23. Ellkaye

    My Experience on AntiRetroVirals

    I encourage those of you who believe in the Ruscetti/Mikovits RV to contact Simon Wain Hobson and ask him to fully replicate the Ruscetti/Mikovits study of 2009. No matter what anybody says here or elsewhere try to get the message to him. So far only SILENCE from Pasteur HQ RV lab over in...
  24. Ellkaye

    My Experience on AntiRetroVirals

    Current treatment protocol is still 25/31 days viread and 11/31 days raltegravir : V245+R800 V+R V+R V+R V V V V V V V Off Off Off and repeat back to the top V+R. This is the optimal regimen for me keeping me at 95%. I tried to do v+r 3days/week like hiv iccarre but it was a bad idea and...
  25. Ellkaye

    14,000 Volts Electrotherapy Beneficial for CFS?

    Indeed !
  26. Ellkaye

    XMRV & Blood Supply Webinar Tuesday, Mar 29

    CFS patients are not allowed to donate blood
  27. Ellkaye

    Preliminary news from Lipkin & co

    Are you retrovirus positive or unknown pooled positive? On meds?
  28. Ellkaye

    I have a question, please ( Cd4/ Cd8 ratio)

    Just trying to see if anyone like me has all three low (cd3 cd4 cd8). Pure curiousity.
  29. Ellkaye

    I have a question, please ( Cd4/ Cd8 ratio)

    Do u have low cd3 also ?
  30. Ellkaye

    Type I Type II Type III ME ?

    Perhaps the disease is triggered with a RV plus : One or more cofactors (vaccine ,hormones,deficient immune system from the rv itself over time as an intrinsic cofactor) Or by one or more of the cofactors being present when the patient gets infected with the RV