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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. B

    Media Coverage of Dr. Alters NIH paper, post stories here

    http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html
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    Dr. Alter Paper embargo ends today at 3:00pm, press conference today

    try this link: http://www.pnas.org/content/early/2010/08/16/1006901107
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    big new post from Hillary Johnson

    No Wayne, that is not 'it', it is the article before that one, named: Rubber meets Road, here is a link: http://oslersweb.com/blog.htm?post=718351
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    Anyone else finding it hard to prioritise Austen over XMRV?

    You are fast beginners! I'll start today, I promise :-) Also a lot going on yesterday re XMRV. I didn't see it as fun though, am very worried that CDC will once more sweep xmrv under the carpet, but I guess this is not the place to discuss thát, should stay on topic here
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    Van der Meer strikes again

    yes Justin, pretended is the correct translation of Dutch pretendeerde. Note though, that it is not a direct quote by Van der Meer. (but it is his opinion, that is for sure ..... )
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    Retrovirus Conference in Prague, April 29-May 4, 2010

    That's right, they are working very hard for us as patients at the moment. They are investigating and trying to find the truth and publish it. :cool: Perhaps Congressional should be just "congress"? I believe it was a Google translation and it translated Congres to Congressional.:innocent1:
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    How not to find Viral RNA The Dutch approach

    Hi Gerwyn, I am trying very hard to understand what you are saying, and believe me for a layperson it is a very difficult subject. But one of the things you seem to be saying is that you cannot use blood that is 15 years old. But didn't they use stored 'old' blood in the Science study? And do...
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    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    Hip, I have exactly the same thing. It seems to have to do with sensory overload. I recognise exactly what you describe. Am not so sure it has to do with Asperger's. I never had this before I got ill.
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    XMRV Study No. 4

    I believe it is the editorial in the bmj about the VAn der Meer paper
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    XMRV Study No. 4

    thank you so much,Gerwyn, I am not sure that I understand all of it, but this is just what I needed. Is it okay if I PM you?
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    XMRV Study No. 4

    study Van der Meer Well, I am Dutch, and I am VERY upset by this article. Professor Van der Meer is a professor of internal medicine at the University of Nijmegen, he has been involved in research into ME since at least the early nineties. He has always strongly opposed any bio-medical cause...
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    Is this the second coming of reeves and wessely et al

    I think that one thing will make a difference, and that is the fact that XMRV could be contagious. That would make it very hard not to give us treatments. Even the insurance companies could not possibly benefit from more and more people getting sick. I hope so, at least ....:Retro confused...
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    Imperial College now offering PCR XMRV testing

    to Mark :cheeky grin::cheeky grin::cheeky grin::cheeky grin::victory::victory::victory::smiley-hug::smiley-hug::smiley-hug: Exactly! bettine
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    Imperial College now offering PCR XMRV testing

    In my most cynical mood: Anyone in the UK who is not familiar with IC's test results of zero XMRV, might in their innocence have themselves tested at IC. The result will of course be negative. So for Wessely c.s. there is one more patient who is XMRV negative. So there is no need for...
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    new article "How Do Kidneys Like High Protein Diets?"

    thanks Jody. Reassuring article! started high proteine, no wheat, no gluten about 14 days ago, and feel much better. bit worried though about whether it was healthy so much protein, so thank you for writing that up :-)
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    Email from Dr Mikovits

    Thank you Quilp for posting this, and thank you Judy for giving us hope!
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    Toxoplasmosis anyone?

    If I read it well (and very vague in head right now) a couple of things strike me: first of all the inconclusive tests for toxo. I read a post where you were asked to come back because they thought they mixed you up. This kind of confusion happened to me when I started to be ill. Second: the...
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    Toxoplasmosis anyone?

    Hi Shane, when I first got ill with ME, I was referred to an infectious disease doctor, because in my blood I had very strange toxoplasmosis values. I don't know exactly what was wrong. But apparently they drew blood several times over a couple of weeks and they didn't understand what was...
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    XMRV transmission and relationships.

    Hi Spit, CJBrennan, @ Spit, you are right, the two things go together, remembering our old selves and accepting each other's current situations. But I have the same experience you both have that generally it is difficult to keep up with friends you used to know when you were healthy. Both...
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    XMRV transmission and relationships.

    ME and MS? My husband and I were boyfriend/girlfriend in my late teens, his early twenties. We broke up, went our separate ways. After 20 years we met again, he had developed MS, I had developed ME. Coincidence? (the nice thing about it is, though, that he remembers me from a time when I...
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    Comment by 'bettine' in 'Essential Peripherals'

    Hi Carla, do you happen to be Dutch? because of the 'nl':) bettine
    • bettine
    • Blog entry comment
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    my third article, "Musings on Retrovirus XMRV and Chronic Fatigue Syndrome"

    Jody, as your other articles: beautifully written, and you put into words what many of us experience and feel. It is so good to read it!:) bettine
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    CCFS Advisory Committee Meeting - Will be Webcast Live

    Summer Summer, thank you so much for posting all the links for the CFSAC, including the timezone converter, and the RealPlayer download site. Very handy, I always forget how many hours the time difference is between the USA and The Netherlands, so this is a perfect instrument! So thanks...
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    Letter To DR. OZ

    I too have sent a letter to doctor Oz today, and also asked a friend of mine who doesn't have ME/CFS, but who is a great fan of him, to also send a letter...:) Bettine
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    XMRV and Transmission: The Big Question

    Suppose you could have carried the virus for a number of years before actually getting sick. In the pre-AIDS era, healthcare workers, people in general were much less focused on blood or needles or dentist's drills etc. being potential carriers of infectious agents. If I remember correctly...
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    MAES M.:July, 2009. Co-enzyme Q10 deficiency in myalgic encephalomyelitis

    Hi Michelle, How would you know whether it is the Omega oil or the Q 10 that makes you less foggy? Omega oils (the three 3,6,9) make me clearer in the head. Also Vit.D helps clear my head, but I guess it is different for everybody! bettine
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    Brain Stress Results in Vicious Cycle

    Hi Janis, you wrote: I was so amazed when I read this. I have been ill for 17 years, and I know exactly what you mean by the hyperarousal, but I have NEVER NEVER thought of lying upside down and let the blood flow back to my head. Next time it happens, I will certainly try it out. Because...
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    Question about MCS

    Janis, thanks for the link, I will check it out, I had heard of him before, but will read up on him/it. Mike, also thanks for your comments. More and more it seems that detox is a major issue .... Thanks, bettine
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    Question about MCS

    Hi all, Many of you have problems with MCS. I was wondering, as far as I know I do not have that problem. (I have many other ME problems, but this one not). This therapy that Mike did, and also the methylation therapies, which I find very interesting, are they ONLY helpful/suitable for...
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    Where We Stand (mid-August 2009)

    This would be so wonderful! If more people could get as well as Mike is. It's an amazing story and am very interested to see things develop!