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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. vdt33

    Disparaging Mikovits Is Also Disparaging the Ruscettis, Lo, Alter, and Others

    FancyMyBlood, A person's history, experiences, accomplishments, biases, or conflicts of interest are usually what determine their integrity and credibility. When several people whose peers recognize their expertise and credibility make a judgement, that judgement is given serious...
  2. vdt33

    Disparaging Mikovits Is Also Disparaging the Ruscettis, Lo, Alter, and Others

    Eco, No where in my post do I state that HGRV causes ME/CFS. That has not been proven yet. What I state is that HGRV has been found in patients with ME/CFS. Frank Ruscetti, Sandra Ruscetti, Lo, Alter, and others would agree with my statement. vdt33
  3. vdt33

    Disparaging Mikovits Is Also Disparaging the Ruscettis, Lo, Alter, and Others

    FancyMyBlood, would you please make such a list of the highest accomplishments of the opposition group. I would be really interested. Seriously
  4. vdt33

    Disparaging Mikovits Is Also Disparaging the Ruscettis, Lo, Alter, and Others

    Thank you, Enid. Things have really gotten crazy. It is time for a reality check! :cheeky grin:
  5. vdt33

    Disparaging Mikovits Is Also Disparaging the Ruscettis, Lo, Alter, and Others

    Judy Mikovits did not work alone to discover human gamma retroviruses (HGRV), and the reputations of those who collaborated with her and supported her lend credence and integrity to her research, which was careful and meticulous. A mistake with a presentation slide and the hasty publication...
  6. vdt33

    Article: FIRST ME/CFS NEWSPAPER AD EVER - Published Tommorrow!

    I faxed my 3 letters to my congressmen with copies of the ad. I'm sure this will be the first time they have heard of XMRV. I'm going to send a donation to WPI too. Every little bit helps IMO.
  7. vdt33

    Comment by 'vdt33' in 'movies about cfs/me'

    Thanks for finding these, Andrew. At the time these movies were made, I did not even know there was such a thing called CFS, although I had been ill with it since at least 1975. vdt
  8. vdt33

    XMRV Message to members

    Free at last, I think that feeling ignored is more common than you know. I have seen other people express the feeling of being ignored, and I know I have felt that way many times. But I try not to take it personally. Not always successful. But I am too sick to read many posts or to reply to many...
  9. vdt33

    Telebriefing is up and available to listen NOW: 5 pm EST

    I listened to the teleconference and this is what I got from it. First, Lo and Alter both agreed that their research strongly confirmed and strengthened Judy Mikovits research. They used a PCR that detected mutations of the retrovirus (variants) in the samples. So there is more than one...
  10. vdt33

    New xmrv study - researcher responds to PCR ENV question

    Good job, judderwocky, and handled very deftly as well.
  11. vdt33

    Okay so can we PLEASE change the STUPID name to something else NOW???

    I haven't laughed this hard in years! :tear: :Sign Good one: The name might as well be WTF because when you tell people you are infected with XMRV, they will think WTF. Maybe Starryeyes can make a video around it. vdt
  12. vdt33

    XMRV YouTube Video

    Starryeyes, this is so well done! Ten stars! Thank you so much for getting our message across in such a powerful but entertaining way. vdt
  13. vdt33

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

    I think there is evidence that ME/CFS (XMRV) has been around longer than 50 years. It has affected 5 generations of my family. My grandmother became bedridden with an unknown illness in the 1930's. She was 28. My mother was diagnosed with diabetes, but she had all the signs and symptoms of ME...
  14. vdt33

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

    I didn't discover this news until 10 p.m. I was ready to PARTY!!! Now I am exhausted after reading the entire thread. :Retro eek: :Retro biggrin: I loved what everybody had to say. Here's Queen singing "We Are the Champions and We Will Rock You"...
  15. vdt33

    How to build a SENSE OF URGENCY

    Parvo, thank you so much for a brilliant and wonderfully expressed post. IMO, those who can't see that all people with ME/CFS are in an urgent situation are in denial. If you have the ability to face the truth, then you know how urgent things are. I don't know how to remove someone's denial...
  16. vdt33

    The Work Poll

    If I were still working at the job I had when I became disabled, I would probably be making about $100,000 a year by now. I have probably lost one and a half million dollars in wages as a result of not being able to work. I don't know how much I have spent on treatments not covered by...
  17. vdt33

    Money for Phoenix Rising and WPI: Isearchgive instructional video!

    Thanks for this information, Frank. I wish I had known about this sooner. I do a lot of searches.
  18. vdt33

    Does anyone have a good hypothesis of how XMRV could account for the 24hr delay?

    I think it has to do with dysautonomia and the brain's regulation of the genes, proteins, enzymes, etc. -- that is, the maintenance of homeostasis. There tends to be swings in hormones, neurotransmitters, immune system components, energy (ATP), etc. When we use up too much ATP with activity...
  19. vdt33

    A Moment of Reflection: Please Read!

    Where Are the Moderators? When I started reading this thread this afternoon, I went straight thru the roof after about 4 paragraphs. It wasn't what was said but the way it was said that was so inciting. I have been sick a very long time, and I *know* that I am dying. And I think I have the...
  20. vdt33

    Comment by 'vdt33' in 'Equal Pay/Equal Power/Equal.....Research Funding: the Campaign to End Chronic Pain in'

    Thanks so much, Cort, for this great article and for all that you do for all of us!! vdt
  21. vdt33

    Has Anyone Else Had Trouble Getting VIP DX Results from Their Doctor? 5 People So Far

    There is a shortage of Internists - at least where I live -- so they can be choosy. They can say they don't know enough about CFS or they aren't accepting new patients because they have more than they can handle. It takes a lot of time, and trial-and-error to find a doctor. You have to be...
  22. vdt33

    Has Anyone Else Had Trouble Getting VIP DX Results from Their Doctor? 5 People So Far

    I guess it's just the broken medical system. Why would my doctor want to keep my test results from me after she signed the form? vdt
  23. vdt33

    Starting Raltegravir

    Hi jimbob, I want to try Raltegravir. Where did you get it? You must have a very cooperative doctor. Thanks for any information. vdt
  24. vdt33

    Has Anyone Else Had Trouble Getting VIP DX Results from Their Doctor? 5 People So Far

    hidlyn, the exact same thing happened to me. This is really bizarre. VIP faxed my results to my doctor on April 30. My doctor won't even return my phone calls about it. I had to get VIP to fax it directly to me this week. vdt
  25. vdt33

    Video clip of Q&A at Peterson/de Meirleir presentation 26 May

    My comment doesn't apply specifically to this thread, but it does apply to the issue of testing for XMRV. My culture test for XMRV was negative. So I am wondering whether I have a different strain of XMRV. In my family, my grandmother was the first person to suffer from an ME/CFS like...
  26. vdt33

    Tongue Issues

    I have terrible problems with my tongue -- swelling, very painful red lesions and also white lesions from thrush. Sometimes I bite my tongue when I am chewing and then I invariably get a bacterial infection. My dentist told me I have "Hairy Leukoplakia" on the sides of my tongue and just...
  27. vdt33

    My XMRV Culture Test is Negative

    Thanks to everybody for helping me put it all back in perspective. :smiley-hug:
  28. vdt33

    My XMRV Culture Test is Negative

    God help me and my family because no one else can. Five generations of my family have been affected by this illness to different degrees -- my grandmother, my mother, my aunts, me, my son, and my grandchildren. Now that I have tested negative to XMRV, I won't be able to convince anyone else...
  29. vdt33

    I Can't Take Any More

    Thanks, Adam. I have met so many great British people since I've been on this forum -- a lot of empathy for other people and a great sense of humor. Yea, Brits! (Of course I am 50% British as well as Native American, French, and who knows what else. LOL!) vdt
  30. vdt33

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

    Thanks to everybody who has provided information. And thanks to Gerwyn and many others, I can understand some of it!