Special Issue of CFIDS Chronicle
Elly - NoVA CFS/FM SG
moves me. I tend not to linger because of the message overload. Feel
free to use what you like and ignore the rest.
The NoVA CFS Support Group is excited enough about the special issue
of The CFIDS Chronicle that we are holding a dedicated meeting for
patients to discuss it and the benefits of belonging to The CFIDS
Association of America (CAA). I could fill a gratitude journal with
all the things the CAA has done for me and the CFIDS community.
Publishing Inclined to Recline: Our Tips for Living with Orthostatic
Intolerance in 2002 connected me and my co-author / co-leader Toni
Marshall, with many new friends who now have less severe symptoms - a
win-win situation. http://www.cfids.org/archives/2002/2002-1-
lwc02.asp. Back when I first got sick, the CAA practically saved my
life with their support in 1992. On yesterday's support group
conference call, Toni said the same thing for her happened in 1997.
As a support group leader, they have always come through with copious
free educational materials. They give hardship memberships to people
who can't afford the dues which has always touched my heart. My group
and the CAA put on a great KNOW MORE CFS conference last year in
Reston, VA. For the special meeting on the special issue, I've
ordered copies to be available and I will accept memberships on
behalf of the CAA, since follow up with paperwork is difficult for
our crowd.
I like Tom Sheridan's "The Link between Advocacy and Research"
article. I will be attending my 5th CAA CFIDS Lobby Days event in
2006. By using the new ruling SS99-2p, mentioned in the article, that
I helped fight for,
http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html
several of our group's members have won their cases on the first
application.
What great resources to have, the CAA and the special issue. It is
wonderful that this issue could be produced with special donations!
As is usual for Chronicles, it has no advertisements to distract us
visually impaired. There is never any "continued on page XX" because
they know we might forget what we were reading by the time we find
that page. I plan on using this issue to educate patients and their
families, doctors and the resistant for years to come. There is a
little too much color used for my tastes, but since I found out that
it doesn't cost any more money to produce in color or glossy these
days, and it does impress and draw in those outside the community,
then I'm all for it. See below for what else I sent to my Y! Group,
CFSupport.
Elly Brosius
Subject: [CFSupport] Science & Research of CFS: Special Meeting
Date: Feb 21, 2006 7:35:54 AM EST
To: cfsu...@yahoogroups.com (only moderators post)
Reply-To: CFSuppo...@yahoogroups.com
Northern Virginia CFS/FMS Support Group
Email: CFSuppo...@yahoogroups.com
Website: http://www.geocities.com/cfsnova/
Y!Group: http://groups.yahoo.com/group/CFSupport

My Groups | CFSupport Main Page
March 18 meeting topic:
2005-2006 Special Issue of The CFIDS Chronicle
The Science & Research of CFS
The 66 page, double "Special Issue" has been mailed to members of The
CFIDS Association of America. Ira and Elly showed their copies at the
meeting last Saturday. Single copies are available for $12 and we'll
have some for purchase at the next meeting. To order by phone, (704)
365-2343. Online ordering of Special Issue:
http://www.cfids.org/ecommerce/products.asp?setCategory=3
to add membership, $35,
http://www.cfids.org/ecommerce/membership.asp
Table of Contents included below.
There is so much in the special issue, we're setting aside a whole
meeting of The NoVA CFS/FMS SG to talk about it. It is a great
resource and reference to have in case someone asks "have you heard
of this or that research?" It is also a who's who in CFIDS. It is an
overall review, making it great for those getting started in this
world. A 12 page treatment article has great quotes by local
favorite DC internist Alan Pocinki MD; features our KNOW MORE CFS
speakers from last year: Lucinda Bateman MD and Staci Stevens,
exercise physiologist; and has a short piece called The New Frontier
on herbalist Jonathan Gilbert's team. (The next issue will have an
article on The Gilbert Clinic methodology and treatment model.) "Is
CFS a Brain disorder?" from the special issue is online already.
Link below.
Give yourself time to find/order your copy and read the parts that
attract you. Use post its and/or a highlighter to mark favorite
parts. Keep a list of questions or comments to share. We don't expect
anyone to have read the whole thing. Heck, even finding it and
remembering to bring it would be worthy of celebration! Come listen
if that is all you are up to. If your passion is science and
research, join us and help the discussion along.
At the last meeting, we heard the issue called both great and
depressing. Perspective and expectations are key. If you are
expecting to find the cure on page whatever in fine print, consider
how unlikely that is. After all, that would have made the cover!
There aren't many answers yet, hence all the research. Some members
store their Chronicles, they are too stressed or too not able to read
them now. We get that. We've been there.
Things that make Elly excited about the special issue is all the care
and work and time that went into producing it for CFS Community and
beyond. It was mailed it to an extended audience to expand education
and awareness. It highlights the dedication of the CFS practitioners
and researchers written about and interviewed. It contains some
patient publicly telling their stories so others don't feel so alone.
Even if you don't find anything startlingly new or that is helpful
now, the fact that so many people care and are talking about CFS is
extraordinary!
This issue will help people participate in advocacy with its
information and its bottom line that more needs to be done. In a
great advocacy summary article, Kim McCleary says "We are sitting at
about $15 million in annual spending on CFS. That number should be
higher. But if we hadn't started doing advocacy, we might be at zero
right now."
Special Issue Table of Contents
The State of CFS Research
Across the Pond
Association - Funded Research
The Link between Advocacy and Research
The Faces of CFS in the US
What Causes CFS?
Immune System gone Haywire?
Is Sleep the Root of all CFS Evil?
Is CFS a Brain Disorder?
Reproductive Issues
Pediatric Issues
Alphabet Soup (overlapping conditions)
Clinical Care for CFS
Patient Perspectives
From CFIDSLink:
The Science & Research of CFS: A Special Double-Issue of the CFIDS
Chronicle
The Association is proud to announce the first-ever issue of the
CFIDS Chronicle devoted entirely to research and scientific progress
on this complex illness. The result of months of investigation and
interviews, this expanded issue covers CFS research findings,
profiles key investigators, includes input from international
researchers and much more. So much, in fact, that it’s over twice
the size of the standard Chronicle. And we’ll be distributing it
broadly in an effort to get the word out on what we know, what’s new
and where CFS research is headed. This one-of-a-kind issue hits the
streets in early 2006. Keep watch here for your chance to reserve a
copy for yourself.
Is CFS a Brain Disorder?
The highly anticipated special issue of the CFIDS Chronicle is about
to be mailed to Chronicle subscribers everywhere. As a special
benefit to CFIDSLink readers, we're pleased to preview an article
from this double-issue.
In "Is CFS a Brain Disorder?" Gudrun Lange, PhD—one of the leading
researchers on CFS and cognitive function—provides a guided tour of
what research tells us about CFS and the brain. This informative
article addresses differences in CFS brain studies, the cognitive
difficulties documented and an explanation of the abnormalities
researchers are discovering through neuroimaging technology. Enjoy
this special preview at http://www.cfids.org/cfidslink/2006/
brain.pdf ...
Note: Discounts are available for orders of 5 or more copies. (704)
365-2343 (Charlotte, NC)
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