Intending to share the journey of treating XMRV.

Jamie Deckoff-Jones MD

Santa Fe, NM

"My daughter and I are XMRV positive by culture. We have started specific antiretroviral treatment. My intention is to share our journey with the medicine and science in context as it happens."

 http://treatingxmrv.blogspot.com/2011/03/reentry-phenomena-part-8.html?spref=fb

UPCOMING CFS CAREGIVER SUPPORT GROUP

cRochelle Hall and Elizabeth Basile, co-Facilitators for CFSBayArea Support Group, have begun a new support group for friends and/or family who provide care to you. If you think this new group would be of interest to the caregivers in your life, please pass this information along to them.

We meet once monthly; our next meeting will be next Monday, March 28th, from 6:00pm - 8:00pm, in our office, at 201 San Antonio Circle, Suite C-125 (building C), Mountain View. We gather to share successes and concerns, exchange knowledge from our own experiences in this role, as well as ideas to navigate challenges we've encountered.

Please feel free to contact Elizabeth Basile at EBasile.mft@gmail.com or telephone my office number at 408.718.6915 with any questions you or your family member(s) or friends may have, as well as directions to our office.

Sincerely,

Elizabeth Basile and Rochelle Hall
Co-Facilitators

PACE Study May As Well Say Cancer Is All in Your Mind

"By now, many of you have heard news reports about the PACE study out of the UK, suggesting that cognitive behavioral therapy and exercise are helpful for chronic fatigue syndrome, and misguided and misinformed media reports suggesting that this shows that the illness is all in people's minds. Understandably infuriating - and about on par scientifically as news reports about space aliens making Lindsay Lohan pregnant!
Welcome to the news media. On a good note, it leaves one wondering, what if many of the articles in those newspapers are equally off-base? Hmmm...
Anyway, two other studies came out recently as well, which add perspective:"

 To read more of Jacob Teitelbaum's thoughts, go to:
 http://www.psychologytoday.com/blog/complementary-medicine/201103/pace-study-may-well-say-cancer-is-all-in-your-mind

Defining an Illness Is Fodder for Debate, article in the NY Times

"The study, published last month in The Lancet, reported that exercise and cognitive-behavioral therapy could help people with the illness. Advocates and some leading experts dismissed the findings and said the authors’ case definition was largely to blame."
To read the article:
http://www.nytimes.com/2011/03/08/health/research/08fatigue.html?_r=1

Cover-up and contamination theories

"While the days, weeks and months pass, the scientific community continues to work on what isn't, instead of what is. The question of how a lab contaminant produces an immune response in patients hasn't been addressed by any of the contamination theorists. And how do you manage to contaminate the patients' samples at a higher rate than the controls when all samples were blinded and run at the same time? In fact, it is the patients that are contaminated with a family of MLV-related retroviruses, not Dr. Mikovits' lab."

 To read more, go to:http://treatingxmrv.blogspot.com/2011/03/cover-up-and-contamination-theories.html

One man's deciding to come "out of the closet" with CFS

"Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis. " - John Falk

To read the article, click here:
http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html

We are on Meetup.com!

Our group is now on meetup.com.  Let other people know that we are a collection of good people, good support and good times as well! Go to:
http://www.meetup.com/Bay-Area-CFS-Support-Group/
and sign up as a member of our group.

Wishes of warm baths and hot tea,
Ambelrin