• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Ruth

    Rumor Viruses author weighs in on XMRV debate

    Great post, Mark. I've been having a number of similar thoughts/conclusions. Hope to add a few thoughts tomorrow, but too tired right now. [That's one thing they have been able to count on, the CFS group has usually been too tired to speak up or fight back effectively. But this has to...
  2. Ruth

    SEPTEMBER 17 -- NEXT Friday -- Deadline to send your CFSconcerns to the US government

    Thanks, Frank, that's a great help. [actually, I'm not sure I'm on that list. Can you clarify? Thanks, Ruth]
  3. Ruth

    who is going to CFSAC meeting Oct 12-14?

    Note that there are a couple of related threads over on Action Alerts and Advocacy, such as "SEPTEMBER 17 -- NEXT Friday -- Deadline to send...." and "Fact Checking for CFSAC Testimony"
  4. Ruth

    SEPTEMBER 17 -- NEXT Friday -- Deadline to send your CFSconcerns to the US government

    Thanks, Hope, for highlighting the main details. That is very useful. I was too tired to do more than just get the notification out there last night so those interested could start working on it. We need to show that even though we've been given the minimum of time to respond that we can...
  5. Ruth

    who is going to CFSAC meeting Oct 12-14?

    Yes, it does make you wonder, especially with the non-working links at the NIH site where I've been watching for the schedule for the past couple of weeks. But at least the non-working link at NIH tipped me off that it must have appeared in the Register and so I went there to look it up. I...
  6. Ruth

    who is going to CFSAC meeting Oct 12-14?

    Now that the CFSAC meeting has been officially announced in the Federal Register for Oct 12-14 (Oct 12 is a "science day" preceding the 2-day meeting, but is also open to the public), we need a thread to help those plan who might be able to attend and/or provide statements. Deadline for...
  7. Ruth

    Chronic Cerebrospinal Venous Insufficiency

    cold wx and cryoglobulinemia and infectious venulitis[me/cfs] [sorry i hit the wrong key and posted prematurely above] here are the two things wanted to add to this discussion before i crash. hopefully some of you can help make the connections that I think i see but can't write about...
  8. Ruth

    Chronic Cerebrospinal Venous Insufficiency

    Just found this thread. Past too tired to think, but want to post two things: 1. Look into Cryoglobulinemic vasculitis 2. I looked into Infectious Venulitis and found this article:
  9. Ruth

    News of replication of WPI XMRV study...

    Bravo, Koan!! This is a very good distinction. Reeves' comment (that he didn't think it would be replicated) seemed definitely aimed at shaping expectations and he might have defended it by saying he was just trying to prepare people for the truth. I have wondered reading this thread if some...
  10. Ruth

    Medscape has placed new XMRV/CFS video in "Infectious Diseases" category

    Dr. Cunha states: "CFS has been excluded as a cause of EBV, although EBV infection may lead to a state of chronic fatigue...." Does this make sense to anyone? And there are a number of statements, particularly in the history of the disease section, that I would disagree with. Anyone else?
  11. Ruth

    Time Magazine mentioned using Mouse Retroviruses in Stem Cell studies

    How widespread is the use of mouse retroviruses to insert genes? Here is another article referring to using mouse retrovirus to insert genes into skin cells as part of the process to create stem cells. Notice the risks included ending up with multiple copies of the retrovirus in the...
  12. Ruth

    Attention DC area posters!

    will bring scissors to cut ribbon Hi Susan: I'll bring the scissors. I don't know if I'll have a ribbon before I get there, but you should be able to recognize me from my picture which I posted a day or so ago just so you would recognize me, but then I was too tired to write the message...
  13. Ruth

    Attention DC area posters!

    DC meeting Hi Tomk: thanks for the encouragement and condolences (for the dead PhD)and tips. We wish you were able to attend and I know you wish that too. I was amazed when my husband offered to drive us there and now I am really excited about it. Like Susan, I feel that I need to go to...
  14. Ruth

    Congressional Oversight Hearing ASAP &

    caa = cfids.org ? Dear Advocate [Re: Disappointed] By CAA do you mean the CFIDS.ORG site? If you click on What's New? on the left you go to a page where it is the first item and if you click on more...here you get the following: http://www.cfids.org/temp/xmrv-press-release-oct09.asp
  15. Ruth

    ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!

    Hi all concerned about Dr. Oz's misinformed show: It looks like he is a real doctor and a real medical researcher and with his background in cardiology should find interesting the cardiac symptoms (heart enzymes found in studies of Lerner and Cheney and others as I recall but would need to...
  16. Ruth

    Attention DC area posters!

    Hi Susan, I think I read somewhere that you are staying at the L'Enfant Plaza Hotel? I looked up its location and it looks like an excellent location and a very good price for the location. My husband and I are staying at a Fairfield out near Dulles (Have some Marriott points and need to...
  17. Ruth

    CCFS Advisory Committee Meeting - Will be Webcast Live

    thank you for clarification Hi Dasiymay, Thanks for the reply and encouraging words. I finally found the community tab that Islandfinn told me about--I was looking in the community lounge in the forums. I will try to go to the CFSAC meeting if I can. Where do you live in Scotland...
  18. Ruth

    Ken Lassesen's comments on XMRV

    anxious drivenness
  19. Ruth

    CCFS Advisory Committee Meeting - Will be Webcast Live

    Are you planning to attend the CFSAC meeting? Hi Daisymay, Since you mention you are in Washington DC, I was wondering if you are thinking of attending the CFSAC meeting next week. My husband has offered to drive us (from Wisconsin!) if I feel up to going. I would be more motivated if I...
  20. Ruth

    CCFS Advisory Committee Meeting - Will be Webcast Live

    where is that thread? Hi Islandfinn, Thank you for the suggestion. Unfortunately,:( I have been searching through the threads for a hour and cannot find that thread. Could you give me some clues? (for a quarter?;) Since like the CDC I too seem clueless, at least on where to find the...
  21. Ruth

    CCFS Advisory Committee Meeting - Will be Webcast Live

    thinking of trying to attend CFSAC meeting? Is anyone else thinking of trying to attend the CFSAC meeting in DC? Do you know if one would be allowed to record it? I'm not sure if I am physically up to attending meetings for two days, but I am strongly tempted to try. Anyone else? I...