Saturday, November 21, 2009

Dr. Oz doing a show about Fibro!

Mac informs me:
Maybe there is Hope ??

Gosh I wish I could have been there for the CFS taping yesterday
to SEE how well or not THAT show went,...
But, maybe just BUT, he is getting THE message ???

Now is see he is doing a Separate show/segment for FM..

Here is the link to submit your story about FM.
If he picks you and you can't attend he might
have you do a Skype interview, at least your story
will ADD to the info he learns about FM.

I wonder how many with FM will end up testing Positive for XMRV?
My guess is MOST..


How to help fund research (many at no cost to you!)

Everyone who uses the internet can help to fund research at no cost to
themselves.  No percentage of any funds raised for research is used
foranything else.  We are but one of just a handful of charities in the
United States that can truthfully make this claim.  Here are a few ways to
help the
National CFIDS Foundation raise funds for  research:

1. Make every gift you purchase count by putting the maximum percentage
toward research:  Buy gifts from Avon!  To date, over $500 has been raised
within just weeks as the representatives for this fundraiser donate their
entire percentage to the National CFIDS Foundation for research.  Right
now, there are special offers available to make this fundraiser even

Go to:

2. Buy any gifts you purchase online via  and designate
the National CFIDS  Foundation.  A percentage of every purchase will
automatically be given to  the NCF and put, 100%, toward research. Specials
are always popping  up when you shop from that site.  And thank you to all
who have done this on a regular basis to help.

3. donates a similar percentage of each purchase when The
National CFIDS Foundation is designated as "YOUR ORGANIZATION HERE".  You
pay nothing extra but receive money saving coupons as well as free shipping
We've just been told a check is in the mail from this site and we  direct
it all toward research.

4. Adding the toolbar to your browser easily can earn money for research
with every click you make!  Go to  to add
this feature.  There's no easier way to support CFIDS/ME research  this
holiday season.

5. Order your Holiday Cards and not only send greetings to all on your list
but include where your own personal  funding has gone that will help spread
information!  Go to our website to order these (click resources,
fundraisers to see the glossy, original cards available and to place your
from the United States, Canada or overseas. You'll receive your order
within a week's time. You can see the breathtaking picture on the card,
taken by a patient, at

Thank you all in advance for helping us help you and ME!

Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02402-3931


Friday, November 20, 2009

A Primer for XMRV and XAND -


Congratulations, Ellen!

The MEA have appointed Dr Ellen Goudsmit as a consultant on psychological
issues. Ellen is a registered health psychologist with a background in
medical and psychological research. Her PhD described three studies of
people with ME (Ramsay defined) and post-viral fatigue syndrome.

Ellen is a Visiting Research Fellow at the University of East London, and is
a co-editor of the ME and CFS references, a list of all published papers on
ME, CFS and related conditions, which she has compiled for the Melvin Ramsay
Archive since 1989. She was elected a Fellow of the British Psychological
Society in September 2009.

Ellen has been a long time critic of the CBT-model for CFS. She introduced
the concept of psychologisation ( the emphasis on psychological factors
where there is little or no evidence to justify it ) and devised the
strategy of pacing for ME.

Neil H Riley
Chairman of the ME Association


Monday, November 16, 2009

Share your story 
  Share Your Story!

  Have You Been Diagnosed With Chronic Fatigue Syndrome?
  Dr. Oz is doing a segment on Chronic Fatigue Syndrome and the discovery of a new virus that may be causing it. If you or someone you know have been diagnosed with Chronic Fatigue and are willing to appear on The Dr. Oz Show please write and tell us your story.


Chronic fatigue patients fight ‘lazy’ label, support awareness


Volunteer for Research

Research Studies and Clinical Trials

direct link to form-

New treatment strategies for immune modulation and antiviral
strategies have been successfully developed for chronic inflammatory
disease over the last decade. Each of these drugs has had to undergo
extensive investigation before obtaining approval for general use.

A critical need is sub grouping the spectrum of neuro-immune disease
in order to stratify patients according to the appropriate therapy.
The current translational and clinical research studies at WPI have
clinical trials as endpoints. While WPI currently has no open clinical
trials, when trials are initiated they will offer patients the
opportunity to participate in clinical trials that are designed to
test the effectiveness of new forms of therapy. Clinical trials are
voluntary, and our team will only involve patients who are entirely
comfortable with the process.

Another critical need is a comprehensive database of patients with
information on your diagnosis, conditions, family health and similar
items. You can help by completing the research questionnaire and
including your information for our researchers to study.

All clinical trials conducted here at WPI are approved and closely
monitored by the University of Nevada's Institutional Review Board
(IRB). No WPI staff have any financial interests or holdings in the
various pharmaceutical companies who produce drugs used to treat
chronic diseases.

If you would like to be considered for participation in current or
upcoming clinical trials, and include your information in our research
database, please complete this research questionnaire-

For more information, please contact:

Research Program Coordinator
Whittemore Peterson Institute
6600 N. Wingfield Parkway
Sparks, NV 89436