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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. annunziata

    "By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

    From advocate Jeannette Burmeister's blog: http://thoughtsaboutme.com/2016/03/21/keep-an-eye-on-your-walitt-nih-study-poses-dramatic-risk-to-long-term-disability-benefits/
  2. annunziata

    Does anyone NOT have flu-like malaise?

    Jenny, I was trying to 'reply with quote' but had trouble with the feature...you said so many things that resonated with me! Yes, I would never -- and never did -- describe these awful sensations of extreme illness as 'fatigue'. I still remember how carefully I tried to describe it to Dr. #1...
  3. annunziata

    Does anyone NOT have flu-like malaise?

    This isn't exactly an answer...but I felt as if I had a terrible flu for about 17 years before it began to let up. It was just about unbearable. There were times (a lot of them) when I lay in bed and wanted to claw my way out of my own flesh, I felt so dreadful and it went on so unremittingly...
  4. annunziata

    Comment by 'annunziata' in 'Transcription of Dr Judy Mikovits webcast on Pro Health'

    Rachel, fantastic! Thank you so much. I am more impressed with Dr. Mikovits than ever -- with her knowledge and assurance. Very encouraging!
  5. annunziata

    CT scan vs. MRI

    Hi Bakercape, Just wanted to add that I agree with DrYes -- I have had an MRI that was normal, but my SPECT scan showed 'severe hypoperfusion' -- I do think it's important to get a SPECT scan done at a good institution, too; mine was done at Cornell Weill in NYC. Amy
  6. annunziata

    Cold weather response?

    Hi Robin, I noticed back in the 80s, during my first winter with ME/CFS, that cold was a big stressor. In addition, I nearly always have to do (or try to do) some things that are hard, like clearing at least some snow from my front steps and bringing in wood. Unless I have a major...
  7. annunziata

    new article "Taking the Scrooge out of Chronic Fatigue Syndrome"

    Jody, it must be so tough not to be able to buy gifts for your family. And thank you for saying what I couldn't bring myself to -- about dreading Christmas because of money. Yes, it is humiliating indeed. I am glad friends sent you gifts. You seem like a very endearing person ;), so I am...
  8. annunziata

    new article "Taking the Scrooge out of Chronic Fatigue Syndrome"

    Jodie, that was great, and all so very true. I confess I was feeling sorry for myself, spending the holiday alone (that has usually been the case), and being too poor this year to buy some small consolation (a book, a 1ml decant of perfume). The economic disaster that ensues from an illness...
  9. annunziata

    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    I agree with you, Martlet. I have three rather distinct muscular problems, beyond the sensation of heaviness and exhaustion that accompanies effort. The twitching, which is most often in my hands, doesn't hurt, but there is a weird sort of 'buzz' that precedes it. It's certainly weird, and...
  10. annunziata

    Hillary Johnson GONE?

    Golly, Quilp, that was beautiful and poignant. It has only just dawned on me that this disease may take my life before very much longer. It certainly inflicted years of a living death. I have some partial remission now, for which I am very thankful, while it lasts. I have always loved...
  11. annunziata

    Time for the Big Talk. How's the CAA doing?

    When you go to the CDC website, under "News and Highlights" at the right of their CFS page, it announces, prominently, "New Study Linking Sexual Abuse and CFS". I ask you, do you think that is legitimate CFS research? Reeves' whole slant has been the psychogenic, school-of-Straus one...
  12. annunziata

    letter to CFIDS re Dr Oz (wrong IMHO) stance

    I think I'm pretty sensitive about the casting of aspersions on CFS/ME, and I thought that the show was damned good. It was 12-minute segment on daytime television, and he treated it seriously -- I thought it represented an enormous leap forward. I'll have to look at it again, but I didn't...
  13. annunziata

    Time for the Big Talk. How's the CAA doing?

    Name change Well, with respect to the name change, I can only say that I feel this always should have been a priority, and I believe the 'old' CFIDS Assoc. was of that opinion, too. I am sure the studies showing that funding drops after a name change are accurate. However -- this is an...
  14. annunziata

    Time for the Big Talk. How's the CAA doing?

    To reduce this to something very simple, I cannot put Ms. McCleary's salary together with the fact that this disease is still called "Chronic Fatigue Syndrome". I miss the kick-ass, grassroots organization that Marc Iverson began years ago. It has become completely unrecognizable.
  15. annunziata

    Dr. Suzanne Vernon updated statement on XMRV

    I agree with this. The XMRV breakthrough made me think of that line of Winston Churchill's: "Now, this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." My personal beginning has dragged on for 23 harrowing years, and I'm more than...
  16. annunziata

    new article on Aphasia

    At first, I had an Emily Litella moment and wondered what Aspasia http://en.wikipedia.org/wiki/Aspasia had to do with CFS/ME. Never mind. Jody, that was just excellent. So many people have laughed at me :( when I have told them that a simple sign, e.g., one saying "Fifth Avenue", suddenly...
  17. annunziata

    They be watchin us. . .

    Exactly. There was a colossal failure by the medical profession, a failure of intellectual curiosity and of clinical acumen. Has your friend in Boston tried Komaroff? I don't know if he still sees patients, or to whom he might refer someone. I haven't consulted him myself so am not sure...
  18. annunziata

    They be watchin us. . .

    It is not unreasonable to expect doctors to understand the significance of things like low NK cell function, which is very serious and known to correlate with the way a patient feels. There are thousands of peer-reviewed medical journal articles documenting the organic basis for this disease...
  19. annunziata

    Dr oz preview - "simple stretching for xmrv"

    I agree with Koan, this is a brilliant summary. I'm tempted to needlepoint a pillow with it.
  20. annunziata

    Dr oz preview - "simple stretching for xmrv"

    Motion intolerance I have tried to explain to people that even very simple movements make me feel sicker. Not tired, sicker. Most of the time, I keep relatively still. I can sometimes save up energy credits for something, but it's not a very reliable system. In the last few years, the...
  21. annunziata

    Going in the closet

    Over the many years I've been ill, only one friend expressed concern -- he and his wife had just had a baby and were worried. I completely respected their fears that I might transmit something to their newborn, even though this was distressing for me. I still think they're among the more...
  22. annunziata

    Dr oz preview - "simple stretching for xmrv"

    This is so true. In "Illness as Metaphor", Susan Sontag pointed out that there were all kinds of psychologizing/romanticizing notions about TB, which only finally changed with the advent of isoniazid.
  23. annunziata

    Dr oz preview - "simple stretching for xmrv"

    Years ago, Oprah did a show on CFS. There were patients who attempted to describe what the illness had done, I think some of them wept; at the end she wheeled out psychologists who explained it was all essentially depression.:mad: I could be wrong, but I believe she subscribes to the upbeat...
  24. annunziata

    News of replication of WPI XMRV study...

    The awful thing is that the situation with CFS/ME is so dire it's hard to be certain that it is a joke.
  25. annunziata

    Simon Wessely. XMRV. Discussion.

    Ramakentesh, my sentiments exactly. My own doctor has been shaking her head at the idea that it's news that the disease is real and organic. (Not that the XMRV study isn't huge news.) I'm so interested that you mentioned the norepi levels. My doctor was doing a study on CFS and...
  26. annunziata

    Concern over government cohorts

    The discourse here may all be wildly over my head (it's more than likely!), but Wildaisy, I think Tina was just teasing me about the honesty of the hospital where the NK cell study was done...I meant, Thomas Noguchi was not involved in a 1990 NK cell study :). Seriously, though, for years...
  27. annunziata

    Concern over government cohorts

    I'm pretty sure Thomas Noguchi was not involved ;) Amy
  28. annunziata

    Concern over government cohorts

    I would just like to add something which, sorry, is anecdotal but does come from impeccably truthful me. It speaks to the matter of whether or not researchers might conceal damning evidence knowing full well how significant it is. In the early 90s, a major hospital in NY (not sure if I...
  29. annunziata

    DeFreitas 1991 Retrovirus/CFS Study

    Dr. de Freitas' silence Cold Taste of Tears, I met Dr. de Freitas and I can tell you she was one feisty woman. I don't know why there has been no comment from her. I've wondered if Hillary Johnson has spoken to her. I would really like to hear what she has to say about XMRV. I hope she...
  30. annunziata

    Simon Wessely on XMRV

    Holmsey, I have to add my name to those who have told you this is out of line. One of the things that attracted me to this site (not having been active in CFS/ME advocacy or support groups for many years) was the obvious intelligence and decency and often, great kindness, of the various...