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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. P

    Lipkin bad news folks

    One positive about the dire early media coverage (actually the only positive) is that people like Lipkin will see how totally misrepresented we have been in the media and therefore the public conciousness (sp) . How frustrating for him and the others to see their their carefully crafted work so...
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    The difference between MS and ME

    This thread is brilliant, don't stop! A lot is over my head but makes so much sense. When my alarm went at 5 am this morning my arms and hands were so dead that i couldn't turn on the light and was late for work. Worst it's ever been. Like trying to throw a switch with a lamb chop...
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    Judy Mikovits has been arrested

    I do enjoy you Angela!
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    "Rituximab in CFS: More research needed" letter in PlosOne

    There is a post in Plos One from the Ass. Editor admonishing people for inappropriate comments and reminding them of the forum rules. I can't for the life of me see anything wrong with them, except of course for the not so subtle Van der Meer put downs. One thing that always strikes me...
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    Another UK ME doctor up before the GMC

    SOS (Same old s***) 'Fatigue disorder' and 'absence of evidence' sort of leaps out at you. Sounds familiar. :Retro frown: You would wonder how one would gather evidence when Wessy and the boys have the biomedical search for evidence in a neck lock.
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    Invest in ME London conference 2012

    Hi Kate, thanks for that.. Think I'll go again next year. Any news on speakers yet?
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    Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

    Hi Firestorm, Yes it was Canada that Dr Judy mentioned, I don't know why I didn't say so. Probably worried that it might backfire. Mind you I suppose that if you say something in public then it's in the public arena. I thought that the grant info was generally known. I have witnessed...
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    Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

    Hi Firestorm, given that most of the audience had never heard of XMRV I imagine that it would have completely confused people if a potted history of the last two years was given. I've been on PR and Facebook every day for the last 2 years (exactly) and I could see the eyes of friends present...
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    Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

    Dr M in Ireland I'm just back from the Tullamore Ireland conference at which Dr M spoke. She got a great reception even though some of the audience didn't know anything about XMRV. This is the third time I've seen Dr M speak and she was in flying form, very relaxed and very open to...
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    Disparaging Mikovits Is Also Disparaging the Ruscettis, Lo, Alter, and Others

    Thank you very much VDT, I needed this. I have been reading very nasty things about Dr M. today. Seems like a lot of people are gleeful about recent events, and give no credence to Dr M and her close colleagues. I don't want to put words into your mouth but what I get from your first post...
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    Ruscetti Acknowledges Reuse of WB Image

    Gallo I can confirm the Gallo part. I asked him to his face what he thought of XMRV. He said he had an interest as he had had PC. He then went on to say that ME was more than likely psychosomatic. That answer bore no relation to the question. He then got his wife to bump into me - in...
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    Mikowitz accused of manipulating XMRV paper

    erv Did she really say this? Can we bring this to the attention of T.T's employers. God if trash like this is put in print can you imagine whats going on in the background?
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    The Waning Con?ict Over XMRV And Chronic Fatigue Syndrome - new WPI sequences

    Thanks Rusty, you have put into words my own feelings that I can't articulate as well. I often think WPI are between a rock and a hard place. Back when this all started, I remember patients clamoring for a test. Obviously it was premature, but some companies were offering it, and WPI...
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    Applying Venture Philanthropy to Chronic Fatigue Syndrome - article on WSJ blog

    Back atcha Wessy :cheeky grin: I was thinking something similar myself Eric. Isn't it a funny old world. Some people hold on to power and influence for the good of themselves and their buddies, others have it and give it away freely. :victory:
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    WSJ on CFS: "Wave of New Disabilities Swamps School Budgets"

    Once again the facts get in the way of these awful statements. The reality is that many of us continue to work even when it's not in our best interests. No choice really. My days off and afternoons are spent in bed to keep well enough to be able to continue. My workmates have got used to...
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    Annette Whittemore on Nevada Newsmakers again

    Maybe Dr Fredericks already had some patients in his practice who transferred. Just guessing. One of the co - authors of the ICC is a Professor in the research dept at the medical school in my local University. His speciality seems to be Endocrinology. Prof Austin Darragh. I will take...
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    New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

    John Lewis Just joined the facebook group - or at least applied. Quick question - is the John Lewis vote daily? I'm not the smartest cookie today and can't figure that out. :Retro rolleyes: Will this mean a daily link/reminder by Facebook as on the WPI/Vivent contest?
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    Annette Whittemore on Nevada Newsmakers again

    SAM SHAD Hi Glen, if you look at some of the old interviews between Sam Shad and Annette, you will see he mentions at some point that a family member is a sufferer. Many of those segments are on the WPI Youtube channel. He seems like a really nice guy anyway but as we all know some of our...
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    Dr. Francis Collins: "Forty similar deliberate-infection studies conducted in US" ???

    A few months ago there were front page headlines in Ireland's two national papers about a story that pretty much sums up our shameful history of child abuse. The story concerns an American woman who was adopted from Ireland in the late 40/50's and grew up in the U.S. As many do, she...
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    Did Dr Gallo first discover MuLVs in human leukaemias and lymphomas in the 1970s?

    Dr Gallo gave a talk in my local medical school a few months after the Science paper. I saw the word 'retrovirologist' in the newspaper ad and thought I would go along and ask a few questions. I mentioned XMRV and got some very strange looks from students and faculty. Dr Gallo mumbled a bit...
  21. P

    Were you ever a nurse or do you know of a nurse that has CFS/ME?

    I know two nurses with ME/FM. One of them has been working for quite a while in a private clinic handing prostate biopsies. Without gloves.
  22. P

    Has Anyone Seen Dr. Kogelnik?

    Invest in ME There is a Dr Kogelnik on the poster for the London Invest in ME conference in May. I assume it's the same one.
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    Nature article about Judy Mikovits and XMRV

    Dr Silverman I've read most of this thread, and seen references to Dr Silverman haveing a change of heart. A post about a new paper from him has just appeared on XMRV.ORG facebook page. I'm dopey :Retro confused: today but it doesn't read as if he had abandoned his beliefs.
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    Article: In the Dragon's Jaws: How To Be Sick - A Buddhist Guide to CFS by Toni Bernhardt #1

    Just to second what Jane says Cort. When I first found this site it took me ages to post as people seemed so educated about ME/FM. I was a lurker! I am guilty too of taking it for granted now and visit every day, sometimes more when news might break. As I'm sure like many others I get very...
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    Lung issues, Tuberculosis and related issues (mods, sorry unsure where to post!)

    Hi Silverblade, Pardon my medical ignorance here but does TB affect the immune system? I'm in my 50's and was in a sanitorium for the best part of a year with it when I was 4 or 5. There were 7 kids in a 3 bed house, not uncommon for those days and I remember all sorts of illnesses among...
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    Sleep/wake and hot/cold cycles causing sleepless nights

    Hi Zuriel, I don't blame your anger and sadness, just be careful who you tell. I was dismissed for so many years and suffered so greatly it makes my blood boil. I was told it was overwork, menopause etc etc The very natural anger and grief you feel will be twisted and turned against you...
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    Can anyone recommend an online pharmacy that sells Famvir and/or Valtrex?

    I've heard people say they got some things OTC there that are prescription here, but how that works for individual meds I don't know...the Irish love to talk about how expensive life is here so the price seems to be the focal point. Paddy
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    Can anyone recommend an online pharmacy that sells Famvir and/or Valtrex?

    Hi Orion, I recently went to see Dr Wood in Seattle. Some of his talks in relation to FM are on the Offerutah site. Where I live is a dead end for medical science so I made the trek. He recommended two sites to buy his recommendations, neither of which he has any interest in. They are...
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    A Survey to Define the Toll Disbelief Takes on Fibro Patients - You Can Help 2/16/11

    Just did it but I made a very specific comment that I would not wish my input to be used for any Wessely-ish babbling. How very sad that he and his cronies have made us so distrustful of them.:Retro frown: