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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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Search results

  1. J

    catch nothing, catch all...what does our immune system tell us?

    I didn't have a cold/virus for 4 years after getting sick with cfs. This always struck me as so strange considering before cfs I caught everything. When H1N1 went through my office at work I had absolutely no fear because I knew I wouldn't catch it. Now suddenly, after 5 years (maybe more who...
  2. J

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

    Didn't Dr. Mikovits once publicly speculate that if xmrv is a cause for some autism and a child has xmrv and receives vaccines that activate the immune system - you are essentially quickly replicating immune cells and so therefore replicating xmrv and fast (since xmrv is in the cells...
  3. J

    Curious about What they used to blame the swollen lymph nodes and low grade fever on

    Oh how my fevers annoyed my doctors. Because I think even they felt foolish trying to blame a new constant higher than usual temperature on depression or anxiety. After 4 trying years I gave up trying to explain to them that I had no real clinical symptoms of depression or anxiety but sure did...
  4. J

    "The best" of the Phoenix Rising ME/CFS Forums

    http://www.forums.aboutmecfs.org/showthread.php?2875-I-remember I hope this link works. I've loved this and gone back to read it time and time again. So much good stuff on this forum but I felt this particular post so much I cry thinking about it.
  5. J

    sedimentation rate during remission?

    also - I remembered there is another thread that kind of touches on this topic - I think it was a thread about salivary glands or sjorens....
  6. J

    sedimentation rate during remission?

    I've read that too. Mine's been tested three times - 0,0,1. Two general practioners have made a comment on how unusual this was (but perhaps not in cfs). Wonder what a cfs doc would say... and I wonder if this hypercoagulation fits in with low blood volume and POTS that CFS patients often...
  7. J

    Anyone feel better when they get the flu or a cold?

    The Why We Don't Catch Colds Thread aka The George/Gerwyn Tag Team - has a lot about this.
  8. J

    Taking Adderal, Ritalin or Concerta for Cognitive problems?

    I'm on adderrall now and at first it helped with concentration but now it's kind of like Otis says, and my racing mind certainly can't focus on or complete any task. I continue to take it because without it I would be way too tired to work. It's saved my life in that regard, but probably does...
  9. J

    Wakefield MMR findings confirmed! Wake Forest finds vaccine virus in gut of children

    Doesn't it sound like it is referencing a new study confirming walker's study? Some dumb doctor gave my mom this vaccine when she was pregnant with me. Interestingly enough, my CFS started like a stomach flu 4 yrs ago and I still have so many GI symptoms today.
  10. J

    Retrovirus in salivary glands from patients with Sjgren's syndrome

    Thanks Warbler for finding this.... interesting...
  11. J

    Retrovirus in salivary glands from patients with Sjgren's syndrome

    I hope this isn't too off topic - I'm curious about the sed rate thing because I've read that some doctors, Dr. Cheney included I think, report really low sed rates in CFS patients. Several places I've read that CFS is like one of three diseases/disorders where ESR is extremely low; the other...
  12. J

    xmrv - prostrate cancer study

    I apologize if this has already been posted or is not new information. http://www.granthamjournal.co.uk/news/health/national-health/prostate_cancer_virus_link_1_349981
  13. J

    The Why We Don't Catch Colds Thread aka The George/Gerwyn Tag Team

    I'm relieved to see others do not get colds, flus, etc. I use to get multiple colds and sinus infections per year but since I got sick with CFS/ME four years ago I have not had them at all! I've pondered this for so long and was worried that this absence of frequent infections and sicknesses...
  14. J

    Recent visit to Cleveland Clinic

    I've been going mostly to cleveland clinic doctors since I got sick almost 4 years ago. I've certainly been unimpressed and have wasted way too much money at the clinic. My last couple experiences there were with doctors who acknowledged my autonomic nervous system issues and low grade fever...