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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


Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo! group at

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. 

Lobby Days 2006 

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. You can also use 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:

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.

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 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, (for supplement ordering)

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Updated May 11, 2011