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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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    Exercise and immunomodulation: what type of exercise IS good for CFS/ME?

    Sorry Hip, doesn't work for me either. I am relaxed and understanding of mind methods. Did these things before ME struck so very experienced. When the ME started the PEM got very bad and like UKxmrv the Postural blood problems set in as well. Sorry to hear that your focus has been drained...
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    NHS Tests.

    Knackered, I recognise some of the tests that Dysautonomia listed but they were only done "by the luck of the draw" on being investigated by the right NHS person and at the right hospital. Some of there were done after an accident to investigate injuries and were refused to me for ME...
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    XMRV Positive? What are your symptoms/medical history?

    The members of my family who have ME or like ME have abnormal cervical smear or have had cervical cancer. Are "night owls" well before ME strikes. All have large moles or warts on their body ("beauty marks on their faces)
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    XMRV Positive? What are your symptoms/medical history?

    The survey looks good and I am very grateful to all of you who have taken the time to create this valuable resource Before the survey gets rolled out would you be happy for a few XMRV+ people to test drive it first. I'm just a little concerned with so many non + people creating the survey...
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    Cross-posting: Over-the counter remedies for retrovirals/XMRV

    Thanks Knackered, it wasn't directed at you in person. Someone else asked me. Just a general comment. We are all different and can tolerate / not tolerate different things. ========================================================= Boomer - I am better in colder climates. The summer...
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    Cross-posting: Over-the counter remedies for retrovirals/XMRV

    Warfarin and paracetemol both make me feel very toxic indeed. I'm very wary of these types of lists as I've watched friends with AIDs try and fail with different things over the years since it started. XMRV replication is slower than HIV so some drugs may have no effect or only bad effects...
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    Help, worried that my husband has now got me/cfs

    Coxy, I also worry about my husband. Over the years he has had ups and downs in his health but never developed anything like CFS or ME. When my husband had cancer treatment he did get very tired and rundown for a long time but eventually he came back to himself again. I do know that the...
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    Cross-posting: Over-the counter remedies for retrovirals/XMRV

    The problem for me is that this list contains things that I have already tried and that make me worse.
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    Why would groups try to replicate XMRV study NOT using WPI techniques?

    IC heard about this new thing a "chocolate cake". They had never seen a chocolate cake and didn't think that it existed in the UK. They had however seen a fruit cake and baked it themselves. Up to now there had only ever been fruits cake to them. They had never seen another cake. Because the...
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    XMRV Replication Studies

    Thanks for making that clear. Much apprecaited
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    Understanding the news: a quick Q&A

    Hi Muffin, Glad to hear that the papers are better for you. I can confirm that the UK papers are totally different and we don't need your warning Do all PWCFS feel that it the case and are all USA newspapers fair and balanced? Just a question as it appears things are very different
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    XMRV Replication Studies

    Your original post Esther said I'm increasingly dubious about this XMRV stuff. It looks like it''s either surprisingly difficult to replicate the WPI's work, or there's something wrong with the WPI's work. Can you please provide any proof that it's "surprisingly difficult" to replicate...
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    XMRV Replication Studies

    Esther, I genuinely don't think that there is any evidence in this thread to determine that IC was a real attempt at replication. Can you please point to them as I have read this thread very carefully and cannot see them? Please give this some thought as you seem fine to read large...
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    XMRV Replication Studies

    This is probably just a misundertanding, Flex.
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    XMRV Replication Studies

    Esther, Why would you think that there are any problems replicating WIP's work (other than deliberate attempts to pretend so). The IC research wasn't anywhere near an attempt to replicate. Do you know about something else? If so , please make this clear. I don't think that it is fair...
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    Understanding the news: a quick Q&A

    What a strange Q & A. Very naive. This certainly does not apply in the UK. Newspapers are often owned by private individuals who blatantly control what is in the papers. They only cover news that reflects their point of view or the political slant that they wish to push. Is there...
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    Azt?

    Death has a way of catching up with us all. I've been ill with ME for around 27 years and my quality of life is very low. Rapid death versus slow drawn out death. The slow drawn out death only has some value in the equation if something works in the end and there is something...
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    Dr Bell XMRV lecture Jan 15th (Santa Ana)

    Thank you Shelly for letting us know. Especially about all the doctors. Hope that your husband got some extra understanding as well. Very kind of him to take all the notes. Sounds like you have a great hubby there.
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    Newly refined test from the Whittemore Peterson Institute

    Reply from VIP dx about the new test ------------------------------------------------------ VIP Dx has updated the technology and improved the culture method which eliminates the need for additional PCR testing on whole blood. This one test combines two previous methods for a high...
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    Newly refined test from the Whittemore Peterson Institute

    Does introducing a Western Blot test get around any of the problems mentioned in the critiques of the testing methods? I did ask VIP in December and they thought it would be available by February
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    Newly refined test from the Whittemore Peterson Institute

    Hi Kurt and all. These were the original tests offered by VIP when I first spoke to them XAND by PCR for XMRV active infection ($400) XAND1 for virus culture for XMRV latent infection ($500) XAND 2 (both for 650) Coming soon XAND with Western Blot (Reflexive) as confirmation of...
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    Newly refined test from the Whittemore Peterson Institute

    How is this new test different from the old Culture test? Kurt - do you mean "repackage" the existing culture test?
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    XMRV transmission and relationships.

    I've now got a wonderful husband but previously I told potential partners that I had ME before any contact takes places. Reactions have varied from initial lack of interest to a complete rejection. Media interest, public preception and reports has a lot to do with their initial reactions plus...
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    Imperial College XMRV Study - Media Response

    Hi Knackered, The insurance policies affected include : Those taken out by people to cover their salaries if they became ill (Income protection), Personal Injury( by people who developed CFS or ME after an accident or their CFS or ME became worse after an accident) Mortgage and...
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    The Fight is on...Imperial College XMRV Study

    The normal "term of affection" widely used in the UK is The Weasel
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    The Fight is on...Imperial College XMRV Study

    Jenny, Can you get a referrel to Dr Main's CFS clinic instead? It's run under St Mary's in Paddington but in fact is held at St Charles Hospital (near Ladboke Grove instead). The only reason I am mentioning this (as there is nothing in the way of biomedical treatment) is that Dr Main has...
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    The Fight is on...Imperial College XMRV Study

    Jenny, I guess that it would depend on your expectations in a GP on how happy you would be. The drugs and tests you have had are very poor compared to seeing a private doctor or seeing a USA CFS. I am glad that you are being treated with respect, being listened to and that your GP is open to...
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    The Fight is on...Imperial College XMRV Study

    Hi Jenny, What experimental drugs have you had access to? I live London and would love to compare notes? Have you been able to have a full immune system workup (TH1/TH2,NK cells, Rnase L) and tests for common viri (EBV, CMV, HHV6 etc)? If so, would you mind saying where they were done.
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    The Fight is on...Imperial College XMRV Study

    Simon Wessely's Father was one of the jewish children evacuated to Britain as part of the Kinder Transport program before or during the 2nd world war. He (Wessely senior) was once did a radio or tv prog on that (so long ago I can't remember which). There is a link to a longer interview with...
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    The Fight is on...Imperial College XMRV Study

    Mithriel and all, As an ex-London ME Support group leader I can confirm that the patients who went to Kings College regularly were often a particular type. Some fought the system and went there to make a point. Others went there once and never again as they were scared to go against their...