SELECTIONS From Our EMAILS and NEWSLETTERS
Ira Steps down as Group Moderator and Webmaster
New Group Webmaster & Updates
Our Group + NFA/CVS/Swiss Medica FM/CFS May 12 Awareness Day Event
New CFS Public Awareness Campaign
CFIDS Lobby Days 2006
New Location for Gilbert Clinic, Jonathan Gilbert to be June Speaker
Press Releases about Genetic Factors in CFS
Yahoo Chat Gone! Messenger Instead
Toni added as MVPS/D moderator
NIH Conference on Multi Vitamin/Mineral Supplements and Chronic Disease Prevention
May Meeting Summary: Speaker Member Andy Baer on Anti-oxidants for CFS
Introduction
Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo!
group at http://groups.yahoo.com/group/CFSupport.
As a member of our CFSupport Yahoo group, you would be able to browse
and search our
archives, use our Calendar of local and national groups, download
files, use our rideshare database as well as receive current updates of
interest regarding
CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.
Ira Steps Down as Group Webmaster and Moderator
Ira retired as sole webmaster for 7 years at the end of March.
Thank you, Thank you, Ira for all of that work and amazing
volunteerism. The website is such a valuable tool for our members and
it wouldn't exist or be so good if it weren't for him. The design and
basic structure he set up is fantastic. So many helpful links. Thank you to Ira!
Ira also stepped down from group e-mail moderator status
leaving Elly and Toni with those duties. We look forward to Ira's
continued contribution at meetings and such. He's not quite getting to
rest from leader duties yet as Elly keeps asking him questions, but
soon. : )
CDC & CAA issue Press Releases April 2006 regarding Genetic Factors in CFS
New Webmaster and Web Changes
Elly Brosius adds webmaster to many hats she wears for the
group. Inspired by the public awareness campaign and other news about
CFS and feeling better enough cognitively right now to learn some new
computer tricks, she has begun to make changes to make the website
easier to navigate, add new things, fix the occasional broken link, and
she put the
Practitioners List on the website!!!!!!!!!!!!!!!!!! Distributed across many pages, by category.
Other New Pages
Site Map
Search within our Site Page
MVPS/D & OI Group Page
Elly's Gratitude Group Page
Flyers for upcoming meetings.
The Prior Speakers page
now goes back to 1993 with updated contact information and a table to
search by last name. You can tell if Elly has worked on a page by
checking to see if date at
the bottom is after March 30, 2006, or check if there is the new
sitemap link
at the top and bottom. She is still going through the old group news
pages and some other ones.
On site newsletters are
resuming with this one. Elly is reviewing old newsletters, adding
tables of contents, and putting the tables of contents on the "Group
News" Directory Page. She is fixing old links and removing information
if too old, out of date. More often, she is updating to make
newsletters still relevant and useful.
New CFS Public Awareness Campaign!
The CFIDS Association and CDC
are launcning the first ever public awarness
campaing for CFS at the National Press Club, June 7 in Washington DC
(event is by invitation only).
Articles are to appear in the July Better Homes and Gardens and Ladies
Home Journal. There will be print ads, tv and radio public service
announcements, and more. See the Spring 2006 The CFIDS Chronicle for more details. Previous announcements:
National CFS Public Awareness Campaign to Launch This Summer
CFS Public Awareness Campaign: Countdown to the Launch
New Location for The GILBERT CLINIC for FM/CFS/Chronic Illness.
Gilbert to Speak to Group June 17.
Blackman to Speak to Group October 21.
The Gilbert Clinic
to open its new location in May in the Rockville / Bethesda area of Maryland. (301)
230-2530. Garage parking is available and there is street meter parking.
A Jonathan Gilbert
article "Perpective on Integrative Treatment" appears on page 20 of the
Spring 2006 CFIDS Chronicle. An online bonus to it
interviewing 3 Gilbert patients including me, Elly Brosius,
appeared on the web ~May 10: Q&A Perspective on Integrative Treatment.
Jonathan Gilbert, NCCAOM,
will be our speaker June 17th in the large conference room of the Mason
Governmental Center, 6507 Columbia Pike, Annadale, VA. Jonathan has
been featured in 2 FM Frontiers articles recently in addition to the
new one in The CFIDS Chronicle. He is a knowledgeable and engaging
speaker and at least 5 of our group members have done very well in his
program for CFS and FM. For links and article info, see the Gilbert Section of our Prior Speakers Page. For more information about location, see Meetings. Dr. Blackman will be our October speaker.
Your interest and
participation is vital! Its not too late for anyone to participate in
Virtual Lobby Days online. Form letters to Congress and other key
individuals await your few clicks at The CFIDS Association Grassroots
Action Center. http://capwiz.com/cfids/home/. You can also use http://www.house.gov/writerep/ for writing to members of the House.
The 14th Annual CFIDS Lobby
Days were held May 8-9 in Washington DC. I attended as did many people
from VA, MD, and DC. PA had the most people registered, but several of
those had to cancel. 90 advocates made it and had 100 meetings with
congressional offices about how they can help people with CFS. The
CFIDS Association along the its lobbying firm, distills our message and
requests into something feasible and easy to explain. The we bring the
unified plea along with our personal stories to Capitol Hill.
The "Asks" to Congress for CFIDS Lobby Days 2006
Sign
on to a letter asking Secretary Leavitt to renew the charter for the
DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) and respond to
its earlier recommendations.
Contact the Chair + Ranking
Minority Leader of the Labor/HHS Appropriations Subcommittee and tell
them to increase the Centers for Disease Control and Prevention (CDC) CFS research allocation to the FY05 level of $9 million.
Contact the Chair and Ranking
Minority Leader of the House Commerce Committee or Senate HELP
Committee and support NIH reform to improve transparency and ascertain
the number of CFS grant applications received and funded in FY 2004
& 2005.
Elly's Meetings/ Follow Up
While other Virinians were
assigned to visit aides of Representatives Moran and Tom Davis and
Senator Allen, I was assigned with others to visit offices of my
representative Frank Wolf and Senator Warner and a Representative Bobby
Scott (Norfolk area). The names and addresses of the people I met with
are below in case you to want to send an a note that you think CFS is
important, too, and repeat the asks. With extra time, group members
Shannon and Anthony and I requested an extra packet or 2
for "drop offs" - where you don't meet with anyone specific, but bring
a packet to an office in hopes that the health aid will look at it.
Shannon said, "I wish we could do my representative, JoAnn Davis." So I
pointed out we were standing next to her office as she said that! We
went in, chatted, and Shannon left a copy of her book about Anthony's
battle with CFS there. She also did a CFS event in Wyoming, so she
wanted to visit the Wyoming rep who was on the Commerce Committee. Keep
watch in Summer 2006 The CFIDS Chronicle for the group photo and report
and progress we've made.
Here is a little bit from my
thank you notes, the stuff that tells about the meeting for that office
so you can feel like you were there with us. Lobbying in person is
expensive in energy, money for cabs and hotel or both. To me it is a
miracle 90 people made it this year. Letter writing and follow up
letter writing is more doable. Perhaps my excerpts here or a
visit to the Grassroots Action Center will inspire you to participate.
I find it a good way to channel frustration into action that can help
others. That makes me feel a little better. -elly
Angela Stewart
Legislative Counsel
The Honorable John Warner
225 Russell Senate Office Building
Washington, DC 20510
Excerpted from Elly's TY note: It
was a pleasure to have you help us through the meeting and
introductions as the jargon and activity of a day on Capitol Hill are
overwhelming, especially when also dealing with a chronic illness. You
showed great interest in and compassion for helping us keep the CFS
Advisory Committee alive. It would be great if Senator Warner could
champion that or encourage a junior member to. We need your office to
help. Many Virginians are suffering. I had a letter to the editor
published in the Northern VA Daily newspaper which covers the northern
Shenandoah valley last weekend and my CFS website overflowed and shut
down from the traffic 8 times over the weekend! You are now a senior
person in your office with a law degree and much experience. Senator
Warner is well established and a statesman. The three things we ask for
are reasonable. Let's work together to help people with CFS.
Courtney Schlieter
Appropriations Legislative Assistant
The Honorable Frank R. Wolf
241 Cannon House Office Building
Washington, DC 20515
Excerpted from Elly's TY note:
It was a pleasure to meet you in person. I had emailed you last June
about a KNOW MORE CFS conference co-sponsored by The Northern VA
CFS/FMS Support Group and The CFIDS Association of America that was
held in Reston, VA. We need your office to help people with CFS. Many
Virginians are suffering. I had a letter to the editor published in the
Northern VA Daily newspaper which covers the northern Shenandoah valley
last weekend, and my CFS website overflowed and shut down from the
traffic 8 times over the weekend! The three things we ask for are
reasonable. Let's work together to help people with CFS. If Congressman
Wolf would start that sign-on letter to the Secretary of Health or
encourage someone else to, it would help tremendously. I am probably
the most active patient advocate in Virginia, even though I have had
this condition for 14 years to the point of being disabled. What I can
do is limited. Most of the work for my support group gets done in my
home in Congressman Wolf's district. Please find a way for his office
to support my efforts.
David Dailey
Office of The Honorable Bobby Scott
1201 Longworth House Office Building
Washington, DC 20515
Dear Mr. Dailey,
Excertped from Elly's thank you note:
Thank you very much for visiting with me and the couple from Norfolk
about their 15 year old and chronic fatigue syndrome (CFS) on Tuesday,
May 9th. It was not your meeting (he came out to tell us it was
canceled), but you listened to some of why we were there anyway and we
appreciate your sincere interest in the issue.
I could not find an email
address for Ms. Jacqueline Ayers with whom our meeting was scheduled.
Could you forward this letter to her. We very much were disappointed we
didn't get to ask her directly for help with CFS issues, while at the
same time we were delighted to meet you and find out all you had in
common with the folks from Norfolk.
The Portsmouth VA CFS
Support Group Co-Leaders have attended an event held by the group in
Northern VA and we stay in contact by email. There is so little aid for
people with this devastating illness, it helps when groups far and wide
can support each other. But it isn't enough and those in groups are
sick or have loved ones who are ill. We need the federal government's
help.
Group leader Toni Marshall adds MVPS-D_OI_NOVA email moderator to her
duties. She send a great message to both that group and CFSupport. See it on new
MVPS/D & OI page.
Awareness Day Event - Us, CVS Pharmacy, NFA and Swiss Medica
Adapted from the NFA the press release: Chantilly, VA ---- On Friday, May 12, 2006, Chantilly CVS Pharmacy
teamed up with the Northern VA CFS/FM Support Group, Swiss Medica,
Inc., the makers of 024™ Fibromyalgia, and the National Fibromyalgia Association (NFA) to commemorate National Fibromyalgia Awareness Day.
Members of the Northern Virginia Chronic Fatigue Syndrome and
Fibromyalgia Support Group were at the Chantilly CVS Pharmacy
located at 3919 Centreville Rd from 4 p.m. to 7 p.m. to provide to
customers free samples of 024™ Fibromyalgia—an
all natural topical pain reliever formulated for those who have
fibromyalgia—copies of NFA’s FM AWARE magazine,
and other informational resources.
The theme of this year’s awareness day campaign is
‘But You Don’t Look Sick! The Invisible Pain of
Fibromyalgia,’ to bring awareness to the fact that—although
we may not have bruises, discoloration, or other visible indicators of
pain—the pain and other hidden symptoms are real.
Fibromyalgia (FM) afflicts over 10 million women, men and children of
all ethnicities. However, the medical community has not yet discovered
a marker for diagnosing this chronic pain condition. This often leads
to friends, family members, and medical experts dismissing fibromyalgia
patients’ symptoms as imagined.
We are excited and grateful to CVS, Swiss
Medica and NFA for providing this opportunity for us to share
information, give samples, and offer hope to the community.
Elly's Report
A successful No VA CFS/FMS Support Group FM Awareness Day Event May 12, 2006
with National Fibromyalgia Association, Swiss Medica, & Chantilly CVS Pharmacy
Our Fibromyalgia/CFS
Awareness Day event with NFA, Swiss Medica, and CVS was a success! The
Northern VA CFS/FMS Support Group sent two representatives to the
Chantilly CVS Pharmacy store for 3 hours, from 4 p.m. until 7 p.m.
Volunteer Maria Yaworsky and I hadn't yet met, so this event gave us
time to get to know and provide support for each other in addition to
helping others by giving out FM Aware magazines and 024 Fibromyalgia
samples.
Maria and I talked at length
with 7 people. One man who had FM was so grateful to learn of a local
support group and pick up the samples of pain neutralizer 024 and all
the NFA materials. We'll be seeing him at a meeting soon! Another man
gathered up all the materials for his fiance with FM. He considered
calling her to come visit with us, but she she was too far away.
We met one gentleman who needed information about the social security
disability application process for his different pain condition that
interferes with work. We provided him a pamphlet on SSDI and an
attorney referral. He was please to get some 024 samples, too. A group
member who finds our regular meetings too far was able to come to this.
She specifically made the trip for FM Aware Magazine and free samples.
She sat and visited awhile, too. CVS provided 2 chairs for us and we
brought two more since we know how hard it can be to stand still while
having symptoms.
Health care practitioner Sam Makoul heard
about the event and found us. He asked for FM Aware magazines and NFA
brochures. We happily gave them to him for his nutrition/stress
management office. He visited with us for more than an hour. Five
people in all signed up for more NFA information, one being ready right
then to write a donation check to begin getting FM Aware at home.
Overall, it was very worthwhile as there was information exchanged
about Lyme, more doctors for our lists, and treatment. Maria has lots
of Lyme info and a Lyme bumper sticker on her car, and is going to send
me a Lyme bracelet for my collection. I gave her the pink/crimson FM
bracelet I've been carrying around to meetings. Among other doctors,
she sees Dr. Levin for IV vitamins (Meyer's) in Aldie, VA, (we both
compared our sensitivities to the vitamin C in them) and for Lyme,
she's been seeing family practice doctor, Paul Beals, MD, whose office
just wrote me to let me know of their website: http://drbeals.net/
Offering materials in a
pharmacy/store is a great outreach activity! It was important to
be there. Next year, May 12 is a Saturday, so more people may be able
to attend or will happen past the nationwide displays. I would
definitely do it again, for awareness day or another kind of occasion,
and maybe we'll get enough volunteers to do two stores. Thank you to
NFA for all its generosity!
The Chantilly CVS Pharmacy
employees were helpful and placed the display table in the Hallmark
Mother's Day cards section making sure there was significant foot
traffic. Congratulations to NFA, the other sponsors and us for
arranging this successful Awareness Day outreach!
Why is Chat not available in Yahoo! Groups anymore?
Due to Yahoo's ongoing efforts to enhance the user experience,
Java-based chat is no longer available for Yahoo! Groups. They are
focusing on improvements to this service using the latest Yahoo!
Messenger chat technology, which the majority of users prefer and is
available.
Find out more about Yahoo! Messenger.
Find out more about Conferencing with Yahoo! Messenger.
* If this is your first time visiting
the Yahoo! Groups site online, you may be asked for your password. If you don't recall your password (or never
received one previously), just go to Sign In Help. There is a way to fill in the email address at which you receive our support group emails, and get your
password emailed to you or sign up for a new Yahoo account.
NIH State-of-the-Science Conference
Multivitamin/Mineral Supplements and Chronic Disease Prevention
May 15-17, 2006, to be held at the Natcher Conference Center (Building 45)
National Institutes of Health, 9000 Rockville Pike, Bethesda, Maryland 20892.
There is no fee for
attendance, and the meeting is open to the public. There is a
parking lot next to Natcher Auditorium that can generally handle
conference attendees. There is a fee to park there for the
day. The fee was ~ $7.00 or so per day in November
2004. There is provision for accommodating individuals with
special needs. Registration is required and can be completed
through a link near the top of the page at the URL below.
http://consensus.nih.gov/2006/2006MultivitaminMineralSOS028html.htm
Comments by member Ron P:
The fact that such a conference is being held at NIH is a sign of
progress. The conference appears to be the good work of the
Office of Dietary Supplements at NIH. For those of you interested
especially in bone health, one of the speakers will be Robert P. Heaney
of Creighton University. He is eminently well qualified to speak
on this topic. Among other subjects, he has studied the
connection between vitamin D status and bone health. See the
agenda at the above URL for other topics.
The draft statement will be available at http://consensus.nih.gov on Wednesday, May 17, 2006
May Meeting Summary: Speaker/MemberAndy Baer on Anti-oxidants for CFS
Member Andy Baer
gave us an interesting talk about anti-oxidants, CFS and oxidative
stress and how that might tie into symptoms, how diet makes a
difference, supplements and he brought his friend Jina Kim who shared
with us her Pharmenex BioScanner for measuring oxidative stress. Most
of the attendees had the test done ($10), and most of our scores were
low, showing oxitdative stress on us. Andy and Jina both take Pharmenex
LifPak supplements and feel improved, she from allergies, he from CFS.
They gave us samples of the GAC fruit juice and the energy bar. Andy
gave lots of techical infomation and referenced one paper of particular
interest:
Oxidative
stress levels are raised in chronic fatigue syndrome and are associated
with clinical symptoms. Kennedy, Spence, McLaren, Hill, Underwood,
Belch Free Radic Biol Med. 2005 Sep 1;39(5):584-9.
Anyone who wants papers, references, etc is invited to contact Andy: 703-979-0302,
drbaer@mybigplanet.com
http://www.drbaer.mypharmanex.com (for supplement ordering)
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