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Support Group

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Spring CFIDS Chronicle Features our June Speaker and Group Members
Awareness Day Turns into Awareness Spring!
Spark! The Campaign to Ignite CFS Awareness
CFS Letter to Editor in NV Daily, May 13, 2006
Possible CFS Article featuring our Members
Casey Fero  ME - CFS Tissue and Blood Bank
Young CFS/ME Research Volunteers Needed
Tips, Time Savers, & Tidbits
Next CFIDS/FM Self-Help Course begins JUNE 12, 2006
Participants needed for online CFS Study
New Books and Videos (DVD, VHS) added to Website
New Awareness Items: CFS/FM T-Shirts, Beaded Jewelry


Welcome to a CFSupport Newsletter! Please visit Group Newsletter Directory, Home, or About Us for more information.  To receive our emails and news items, 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/CFIDS (chronic fatigue syndrome), FM (fibromyalgia), ME (myalgic encephalomyelitis), OI (orthostatice intolerance), and more. We keep the number of emails to less than one per day on average.

Spring 2006 CFIDS Chronicle features June Speaker, Jonathan Gilbert, NCCAOM
 and group members/patients.

Group members Debby S and Elly B were featured in a Question and Answer section following and article by June 17 Speaker Jonathan Gilbert, who is an NCCAOM certified acupuncturist and chinese medicine herbalist. "Perpective on Integrative Treatment" appears on page 20 of the Spring 2006 CFIDS Chronicle. An online bonus to it which continues the interview with 3 Gilbert patients is on the web ~May 10: Q&A Perspective on Integrative Treatment.  

The Gilbert Clinic  opened its new location in May in the Bethesda and Rockville areas of  MD. (301) 230-2530. Garage parking is available and there is street meter parking. For more information, come to the June 17 meeting

Our June 17th meeting will be in the large conference room of the Mason Governmental Center, 6507 Columbia Pike, Annadale, VA. Bring a sweater - that room can be cold! 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 the June 17 meeting, see our Events page. For more information about location, see Meetings.

Awareness Day turns into Awareness Spring!

Our meeting was listed in usual places to reach more people: News Channel 8's Event's page, Times Community online events pages, NFA/ events page, (FM Personal Support Care) events page, Pathways Magazine, and Novec Co-op Living Magazine.

More CFS Media:

Brave Hearts (Cover story of March/April 2006 Bethesda Magazine details CFS)
Like the subjects she writes about, Seabiscuit author and Bethesda native Laura Hillenbrand has triumphed over incredible hardships By Jody Jaffe

CDC runs national CFS print ads in July issues
of Ladies' Home Journal and Better Homes and Gardens.

Chronic Fatigue Syndrome - a hidden killer? ABC Victoria - June 19, 2006
The first ever death from Chronic Fatigue Syndrome has been recorded in Britain.
Will this finding change the way CFS is tackled?

See our "In the Media" Page for more stories about CFS, FM, MCS, Lyme, POTS & more.
Also has one click links to search engines for breaking news about the same.

Spark! The Campaign to Ignite CFS Awareness

Get Informed. Get Diagnosed. Get Help. That's the new slogan for the public awareness campaign for CFS by the CFIDS Associtaion of Amercia set to launch June 7 ath The National Press Club in Washington, DC.  The CFIDS Association has done two articles in CFIDSLink about it, National CFS Public Awareness Campaign to Launch This Summer and CFS Public Awareness Campaign: Countdown to the Launch. The Spring 2006 CFIDS Chronicle also goes into great detail.

Our group, (Elly), for its part to be ready for a large influx of people just learning about CFS, is upgrading website with a doctors and lawyers list, adding more navigation and search options to get people to what they need faster,  new newletters, and updates to the old one. We are also putting out more meeting announcements for more local publicity.

You can help. Be familiar with our website and to direct people. Take some extra business cards describing the group and cfids intro brochures to hand out to interested parties. Come to a meeting in you haven't been in awhile. Renew your subscription to The CFIDS Association. Your membership is important!!!

CFS Letter to Editor Published in NV Daily, May 13, 2006

Using the Grassroots Action Center at The CFIDS Association website, Elly Brosius sent 44 letters to media outlets about International CFS Awareness Day. The site makes it easy with a form letter and choosing 5 newspapers or tv/radio stations at a time. There is a space to add personal text about our group or yourself. In the first (of course!) group of 5 she picked was a newspaper of the Northern Shenandoah Valley area, The Northern Virginia Daily. Editor John Horan wrote back with a note he'd publish the letter if it was edited down to the paper's 350 word limit. Elly complied, and CFS/FM and our group made print. Here's the letter, which is not online at

Dear Northern Virginia Daily Editor,

May 12 is International CFS Awareness Day and as a local resident affected by this serious, misunderstood disease, I am asking you to help raise awareness about it.

Chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS) affects more than one million American adults and teens, yet few people understand its long-lasting, multiple effects. CFIDS is characterized by severe exhaustion, disabling problems with memory and concentration, widespread muscle weakness and pain and persistent flu-like symptoms. Science has documented abnormalities in many body systems.

The Centers for Disease Control and Prevention's research shows CFS is as disabling as multiple sclerosis and end-stage renal disease. Each year it costs our economy $9.1 billion in lost productivity alone.  Researchers have found that 80% of people who have this debilitating condition don’t have a diagnosis or adequate care. Health care providers aren’t skilled at diagnosing it.

This week, I went to Capitol Hill with 89 CFS advocates to ask Congress for help. It was my 5th advocacy trip in 14 years of having this illness severely enough to be disabled. It was very symptom provoking, but this condition is not getting adequate attention.

The Northern VA CFS and Fibromyalgia Support Group will give free materials at the Chantilly CVS Pharmacy between 4 -7 PM on May 12.  Regular support group meetings are the 3rd Saturday of each month from 2-4 PM, 6507 Columbia Pike in Annadale, VA. I am a leader of this group which hosts speaker meetings, discussions, and email outreach. Inquirers can call (703) 968-9818, email us, or visit our web home.

The local group and The CFIDS Association of America provide credible information to the public and the health care community. The CFIDS Association of America is the nation’s largest organization dedicated to conquering CFS and its website is

Thank you in advance for helping build understanding about this devastating condition that has such a profound impact on the individual and a significant impact on our community.

Elly Brosius, (703) 968-9818

Possible article featuring our members!

Throughout May and June everal group members have been interviewed for a newspaper article. When we know when it will be published, we'll send an email to CFSupport members. It will appear on our In the Media page as well when the webmaster gets back from a break. To look for it yourself, check the Loudoun Times Mirror online at weekly. They publish in print on Wednesdays, but articles online throughout the week.

To see an article about orthostatic intolerance and dysautonomia by the same reporter who interviewed us, go to "Support group for rare disorder meets in Sterling". Post a grateful comment with that article or the upcomping CFS one if you find either helpful.

June 17 Meeting
Speaker Jonathan Gilbert, NCCAOM

Chronic Fatigue Syndrome and Fibromyalgia: States of Unrest
How chronic overwhelming stress gets you there, possibilites for resolving symptoms.

Event Flyer
Speaker Contact Info:
One Central Plaza, 11300 Rockville Pike, Suite 1205; North Bethesda, MD 20852-3003
301-230-2535 (fax)

See our Speakers-Prior Page, Gilbert Section for info, articles and links about herbalist / acupuncturist Jonathan Gilbert's unique approach to treating FM and CFS, blending eastern and western modalities.

Elly's added a new webpage on our site for Speaker Gilbert.  It has parts of the June Meeting summary incorporated into it.

Casey Fero  ME - CFS Tissue and Blood Bank

On July 4, 2005, at the age of 23, Casey Fero died in his sleep. In September, a Madison forensic pathologist determined that Casey had Myocarditis, that is, viral infection of the heart muscle. Some medical researchers suggest that there is a link between cardiac problems and chronic fatigue syndrome (CFS).

Casey was diagnosed with CFS at age 9 and again at age 15. It caused him to feel weak, unable to think, and exhausted. He was plagued with headaches, stomach problems, and had major sleep disorder among a list of daily symptoms.  Casey persevered and did not want people to know his condition. Early on, he knew that medical help was unavailable and furthermore, he was met with disbelief in the school and in the doctor’s office. 

As a lasting tribute to Casey, the Fero family, the Wisconsin Chronic Fatigue Syndrome Association, Inc., and Mothers against Myalgic Encephalomyelitis, Inc. (MAME) will create the first universal access blood and tissue bank for ME-CFS patients. 

Sound medical research is the key to understanding the cause of these disorders and to developing treatments that can help patients manage daily living.  Many recognized illnesses, such as Alzheimer’s, were poorly understood before the creation of tissue and blood banks.   Precious gifts of tissue and blood benefit all individuals and families living with illness. 

A universal access specimen bank means that any scientist can ask for samples provided that their study meets careful guidelines. The Institute for Viral Pathogenesis, a Medical Diagnostic Laboratory in Milwaukee, will house the freezer for specimens. <> Government regulated procedures are already in place to care for donated tissue and blood.

Right now, we are fund raising to buy an additional freezer for storage at the facility. The cost is about $10,000. Will you help us?  Your contribution is tax deductible through the Wisconsin CFS Association, Federal ID number 39 -1614649.  You can send a check to the association at the address listed below. Please specify CASEY’S FUND. Contributions are dedicated to Casey and will not be used for any other purpose. 

Wisconsin CFS Association
747 Lois Drive
Sun Prairie, WI 53590
Donate online at

Youth CFS/ME Research Volunteers Needed

The Center for Community Research at DePaul University is studying
ME/CFS in children and adolescents.

A significant problem in ME/CFS Research is the lack of both a pediatric definition of ME/CFS and a reliable instrument to assess it. The DPHQ was developed as a response to these problems.  It is hoped that findings from this study will help to develop an accurate case definition of ME/CFS in young people and that the DPHQ will become an instrumental tool for correctly identifying cases of Pediatric ME/CFS.

DePaul University researchers are looking for children and adolescents ages 5-17 and their parents/guardians to complete the DePaul Pediatric Health Questionnaire (DPHQ).

* The DPHQ is a short questionnaire and will take about 30 minutes to complete
* Participation and answers will be kept confidential
* You can either mail the questionnaire back.
   Your time and voluntary assistance are needed and appreciated.

For more details of the study, see our page of Clinical Trials.
If you and your child are interesting in volunteering, please contact:
Michelle Choi, MS, RN; Email:, Telephone: (773) 325-4976

Research Team's website:
Principal Investigator: Leonard Jason, PhD
Enrollment will take place at least until the end of 2006.
Advertised with permission.

Tips, Time Savers, & Tidbits

Free 411 

If you or any other members have issues with lifting heavy phone books and turning the pages or punching too many keys at once or not having the strength to press keys repeatedly, you would be eligible for FREE 411 if your doctor will sign the Verizon note for it. - Joan
Here is the more info I could find quickly: 1–800–974–6006, Verizon Solutions for People with Disabilities. There are services for people with mobility, speech, hearing, visual and cognitive problems. If you have more information and want to write it up, send it in. - Elly

Think Globally, Search Locally - Site Search

Did you know it is easy to confine a Google or other search engines to one website? For Google, what you do is add the word site and a colon and the website next with no spaces. Here is an example of what you type in the search box if you wanted to look for the word sleep on The CFIDS Association website: "sleep". This is great for the times you know you've seen something on a certain website, but you can't find the right page again. Or sometimes a site's search engine leaves something to be desired. It gives you results but you can't figure out what you are looking at. I and others have had that trouble at Using the Advanced Google Search option from allows you to set many parameters, but I'm very happy with just the site search trick above. I learned about it when I was creating our own site search for this website. I first programmed it with Google, but have since changed our site search to be an Advanced Yahoo Search. To do the above example in any general  web Yahoo search box, type "sleep"   - Elly Brosius

Small Lightweight Glass Bottles

For those who are avoiding plastic to carry around water for drinking in, especially in summer when the heat in your car can accelerate the plastic taste getting into your water, look for products to keep the bottle from for refilling. Coke is making 8 oz glass bottles again. I've seen them for the new product called Coca-Cola Black, a coffee coke drink. Whether or not you are interested in that product, you may think the price worth it to get a small glass bottles with nice lids that reseals. Sobe and Honest Tea bottles are also nice choices, if you can handle the weight of a bigger bottle and more water. On a Sobe bottle, I have used an craft knife to cut away parts of the lable I find unattractive and end up with a pretty bottle. - Elly

CFIDS/FM Self-Help Course begins JUNE 12, 2006

The CFIDS/Fibromyalgia Self-Help Course is now accepting signups for its next quarterly class. The course is an eight-session, solution-oriented email discussion group that focuses on practical strategies for improving quality of life and, where possible, increasing chances for recovery. The discussion centers on sharing techniques that group members have found helpful in coping with common problems of CFIDS and fibromyalgia. The course is based on similar self-help programs for arthritis and other chronic diseases developed at Stanford University. The course has been featured  in the "CFIDS Chronicle." 

Participants needed for online CFS Study

Dear CFS Group members: My name is Michelle and I am undertaking a Postgradate Diploma in Psychology at La Trobe University in Melbourne, Australia. Myself and another student, Karen, are working in conjunction with our supervisor Dr. Helen Lindner (Health Psychologist) to investigate the role of illness perceptions, styles of thinking, coping behaviour, depression and adherence to treatment in CFS. More specifically, we are examining some of the factors which may underlie depression in CFS. We are hoping that by gaining a better understanding of why some CFS patients develop concurrent depression and some don't, it will enable targeting of particular areas in treatment and may conceivably reduce the levels of depression in CFS in the future.

We do realise that many CFS patients are wary of any research connected to psychological issues. We totally understand your apprehension but would like to make it clear that whilst we do realise that there is controversy surrounding whether CFS is a physiological or psychological illness this is not our area of interest. As you no doubt realise when somebody is diagnosed with a chronic illness, whether it be cardiac disease, cancer, diabetes, or asthma it will have a psychological impact upon them. It is this impact we are interest in, not the aetiology of the illness.

If you are 18 years of age, have been medically diagnosed with CFS, but are otherwise healthy (i.e. No other chronic illness, such as cardiac disease), we invite you to participate in our study. You will be required to spend approximately 20-30 minutes completing an online questionnaire.

If you are interested in participating in this research please contact the researchers via email at You will be supplied with an ID number and password to access the online questionnaire.

If you have any questions or concerns regarding this study please feel free to contact Dr. Helen Lindner on 011 61 03 9479 5045.

The results of this data may appear in publications, or presented at scientific conferences.
Results will be published in the students’ theses and may be viewed the week beginning November the 27, 2006, on Dr. Lindner's page at
[As of 2/25/07, not there.]

Michelle Noonan (BBSc, PDGP) and Karen Walker (BBSc, Hons)
School of Psychological Science
La Trobe University, Bundoora Campus, Victoria, Australia
Note: Study closed in August 2006.

Additions to our Books and Videos Pages


Fibromyalgia & Chronic Fatigue Syndrome:
7 Proven Steps to Less Pain And More Energy
by Fred Friedberg, PhD; June 2006
On site:
Book's site:
See Elly's review at Amazon or book's site.

CFS is a Call for Soulwork
by Gretchen Brooks Nassar; May 2005
On site:
Two chapters online at author's website:

Also added on Page 5, both reviewed in the Spring 2006 CFIDS Chronicle:
Havens: Stories of True Community Healing by Leonard Jason, PhD and Martin Perdoux
Fatigue as a Window to the Brain by John DeLuca (editor)

Video: DVD, VHS

Fibromyalgia: Show Me Where It Hurts; June 2006
At ImmuneSupport, DVD only
On site:

Preparing for Your Social Security Hearing
On site:

Awareness Items

New CFS or FM T-Shirts and Notecards

Slamdunks Apparel Home Page
CFS & FM Awareness Collection
Many kinds of shirts, nightgowns, designs including butterfly, blue ribbon and more.
Proceeds to the CFIDS Association of America
By Ashley, an 11 year old with an Aunt with CFIDS

Our list of stores that sell CFS and FM items

CFS/FM/ME/ribbon charm Jewelry: Necklaces, Bracelets

Beads of Hope by Nan (out of business 9/06)


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Updated May 11, 2011