• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    XMRV Message to members

    Hi, I too don't post on here very much - takes all my energy reading the wide range of topics!!! But sending you a very warm welcome indeed. x x xx
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    Anti-Virals working for XMRV?

    Thanks for the replies, Have the WPI put forward any recommendations? I guess not if people are trying different medications. Also am I right in thinking that you have to be closely monitored while on anti-virals? It would be interesting to know if peoples viral load drops while taking them etc?
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    Anti-Virals working for XMRV?

    Hi, Sorry but I am too brainfogged to read the long threads on anti virals. Could anyone possibly sum up for me which if any have ben used and are showing positive results? Thanks evaso Yawn x
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    Lightning Process to be Evaluated in Research Study on Children

    "Should research be done in children before adults? Children have the right to research particularly in illnesses which are different to adults. CFS/ME in children has a different outcome to adults and the treatment is different therefore research in adults cannot be extrapolated to...
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    WPI - other CFS/ME & Immune Research

    Wow - it is just fantastic to see the amount of research and ideas the WPI have to try and builld a whole picture to ME/CFS - I feel ike printing the link out and sending to medics here in the UK!
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    Lightning Process to be Evaluated in Research Study on Children

    Hi Suzy, Many thanks for the info. I think what you are doing is just fantastic - so much work. But appreciated so much by all of us with children with ME/CFS. Do we know how they are going to select the children if the study goes ahead? I am tempted to write and ask if it is possible to...
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    Lightning Process to be Evaluated in Research Study on Children

    Thank you Suzy for keeping us up to date with this. I am following the thread with interest as my 12 year old has ME/CFS (as do I) and I am appalled that this "study" may be approved . With the news of the Dundee study into blood abnormalities in children with ME/CFS showing activating...
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    Article: An MD on the Lightning Process

    Hi Suzy, I am not sure what the Tymes Trust have done publicaly - re the LP study. But I know they are not in favour of it. I spoke to the trust recently as I wanted to know who I could write to to express my concerns as a parent about the study. As you say Jane Colby will hopefully be be...
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    Article: An MD on the Lightning Process

    I have been following this thread with interest - Having an 11 year old with CFS - there is absolutley no way that I would allow my son to be part of the LP pilot scheme. As others have said any pilot project should undertaken on adults NOT vunerable , ill children. The last thing a sick...