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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. J

    Will the indifference of the UK authorities to ME claim one more life?

    I have known the story of Gillian for about a year now, she is genuine and her needs are great. I have asked all the questions that Duckndive has asked and sorry to say Duckndive that there is no support for her, they are not interested, even her local doctors will not visit her. Her MCS...
  2. J

    emergency report from China

    Hi Hanchuchu, I just wanted to say there is hope..somewhere...never ever lose sight of that. It seems to me that the authorities have a habit of covering things up whatever country you are in! Please don't give up that hope. I am sorry but I have not read all this thread, are you in touch...
  3. J

    Comment by 'JAS' in 'Do not even contemplate giving blood you would be no better than a murderer.'

    @ Aurishima.....I am sorry but your last sentence completely blows away your own argument "Anyone who does not act to stop the spread of XMRV, knowing it destroys life's like ME/CFS does, stands by and shies away from real action which could stop the crime, is an accomplice to the crime !"...
  4. J

    Is XMRV Causing finger print problems in CFS?

    At the IiME 2010 it was brought up, people who have had ME/CFS for a long time can lose their fingerprints. I think it was by Dr Cheney...sorry cant quite remember.
  5. J

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

    I just feel that this can no longer be hushed up anymore, it is true, it is real and it is out there. The roll it plays has yet to be determined but hands are being forced, can the NIH and FDA now deny this? Interesting but I for one feel a huge sense or relief today...hur...bl**dy...ray!! :) x
  6. J

    Do you fall down?

    Sorry to hear that Leela, not a nice symptom, and yours too Min. I had an acute vertigo attack along with a viral infection at onset....but not really since. I knows yours wasn't vertigo, lots of sufferers do have balance problems and probably due to that? I just have the usual ME/CFS symptom...
  7. J

    How long does it take to get the results from the culture test?

    Hi Redo, I am in the UK and was told it would take 3 weeks but in fact took 6 weeks (not that I minded). I was positive too...I am moderate (to severe when crashing and takes around 2 months to recover), had viral onset. Hope that this helps....I believe that the serology test will be out...
  8. J

    5th Invest in ME/CFS Conference - Programme May 24 2010

    I was tested by VIP and in the UK...VIP do not offer the serology test yet which is where the 95% figure came from from the WPI, they are only offering the culture test so far which yielded the 67% result...I believe that they are hoping to offer the serology test soon. I think that Cheney's...
  9. J

    The Swedish Study

    Is this the same person who was involved in the Swedish study whose death was announced a couple of months ago?
  10. J

    Plea from Dr Bell to donate to the WPI

    Thanks Fred...done :)
  11. J

    The Why We Don't Catch Colds Thread aka The George/Gerwyn Tag Team

    Hi Margaret, I have the sun thing too...it just makes me feel ill. I just don't think my body can cope with the change of temperature...it doesn't know how to regulate itself and sends it all wrong (very scientific me!). ;)
  12. J

    Dr. Judy Mikovits IACFS/ME Newsletter Apr 2010 Q & A

    Is it just me or is this frightening the life out of everyone too. For Sale: 1 Retrovirus, 1 careful lady owner, Full service history, Private Insurance, Reasonable Mileage. Extras: spoiler, Cruise Control, Central Locking, Immobiliser, De-conditioning, Climate control (faulty) Private Reg...
  13. J

    XMRV testing in the UK: statement from The ME Association

    This is what disturbs me with their thinking: "The MEA believes that a small but important part of further research into a possible link between XMRV and ME/CFS is to retest anyone who has sent blood to the US. This process would involve retesting at one of the retroviriology laboratories...
  14. J

    WPI UK XMRV testing/study

    Villagelife, I guess really that this different, it is a study with a goal to achieve, and as a result of the study we are getting our XMRV results. Hang in there. With the private testing I was advised I would get my results in 3 weeks and it took 6 weeks. Countrygirl's advice was good and I...
  15. J

    WPI UK XMRV testing/study

    This is the start of a journey for us all, no doubt there will be twists and turns along the way..but we are all in it together, both those being tested and those who are currently unable to be...regardless of the result, this is for the benefit of us all and that is of great comfort. God bless...
  16. J

    Finally - XMRV+ blood supply/standardized tests/MECFS Apr 4 '10

    Thanks Fred exactly correct, yes, Garcia, I know it is here...I have it. However I am just trying to defy the logic of those saying it isn't or that it is a different type. Does anyone know if and how the general blood banks are topped up if there is a shortage?
  17. J

    Finally - XMRV+ blood supply/standardized tests/MECFS Apr 4 '10

    Thanks very much Fred....great info....anyone know anything about the general blood banks?
  18. J

    Finally - XMRV+ blood supply/standardized tests/MECFS Apr 4 '10

    Does anyone know conclusively where the UK blood supply comes from, reason being I really want to nail Wessely on this...that XMRV isn't in the UK. As far as I am aware the UK were still importing US blood in 1985. I spoke to the British Haemophiliac Society and the person I spoke to said that...
  19. J

    XMRV positive by serology from WPI

    "AIDS drugs blocked a virus linked to prostate cancer and chronic fatigue syndrome, a study showed. Merck's Isentress fought the virus, XMRV, more powerfully than 44 other anti-HIV compounds tested against the pathogen in laboratory experiments, according to researchers from the University...
  20. J

    XMRV positive by serology from WPI

    I am just hoping that is why Glaxo Smith Kline stepped in to run a study, Dr Mikovits said that she had been working with a couple of pharmaceuticals...perhaps they know it is here, their drug retrovir is already proven to have an affect on XMRV in vitro when combined with another drug..perhaps...
  21. J

    Please see ERV Blog 23rd March March 2010 and respond.

    I am not remotely worried or offended if she questions the science, it is the tantrums and utter drivel that goes with it which is personal and vindictive. She does have to learn that old important lesson... 'what goes round comes round'. Thanks Fred for the 'u' :)X
  22. J

    Please see ERV Blog 23rd March March 2010 and respond.

    Hi Fred, thank you for your info.....she was asking if we were 'mentally handicapped!'...nice! I have written an email to the actionline@ou.edu. address, I did cc it to Chris Purcell at the regentspurcell email and it shot it back...did this address work for you? Please would it be possible to...
  23. J

    Please see ERV Blog 23rd March March 2010 and respond.

    I think you were right....ERV is off on a rant! She is very quick to judge others when the person she really needs to look at judging is herself.
  24. J

    NEW UK Study website for WPI

    I just want to add that I am working on the site too...we are very grateful to Fingers' son for all his help! Unfortunately we are not professional IT consultants and to be honest pretty impressed that we got this far!!! We are CFS/ME sufferers like you who want to help and make a difference...
  25. J

    WPI UK XMRV testing/study

    Great...good luck Ritzcarcker!!!
  26. J

    Please see ERV Blog 23rd March March 2010 and respond.

    I just wanted to say a big thank you to everyone for all your help with this. Great research everyone! Thank you jx
  27. J

    Please see ERV Blog 23rd March March 2010 and respond.

    Thanks Monkeybusiness...great info. jx