Selections from our
EMAILS and NEWSLETTERS
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
Introduction
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
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/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/Fmaware.org events page, FMPSC.org (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 cfids.org 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 nvdaily.com.
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 cfids.org.
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.
Sincerely,
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 timescommunity.com
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:
TheGilbertClinic.com
One Central
Plaza, 11300 Rockville Pike, Suite 1205; North Bethesda, MD 20852-3003
866-546-0777
301-230-2530
301-230-2535
(fax)
info@thegilbertclinic.com
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. <www.ivpresearch.org> 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 http://www.wicfs-me.org.
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: mchoi7@depaul.edu, Telephone: (773) 325-4976
Research Team's
website: http://condor.depaul.edu/~ljason/cfs/
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
site:cfids.org". 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 cfids.org. Using the Advanced
Google Search option from www.google.com
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 domain:cfids.org"
- 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 cfsresearch@latrobe.edu.au.
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 http://www.latrobe.edu.au/psy/staflist.html.
[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
Books
Fibromyalgia
& Chronic Fatigue Syndrome:
7 Proven Steps to
Less Pain And More Energy
by Fred Friedberg, PhD; June 2006
Amazon: http://www.amazon.com/exec/obidos/ASIN/1572244593/cfsupport
On site: http://www.geocities.com/cfsnova/bookstore06.html
Book's site: http://www.lifebalance7.com/
See
Elly's review at Amazon or book's site.
CFS is a Call for
Soulwork
by Gretchen Brooks Nassar; May 2005
Amazon: http://www.amazon.com/exec/obidos/ASIN/1583850716/cfsupport
On
site: http://www.geocities.com/cfsnova/bookstore05.html
Two
chapters online at author's website: callforsoulwork.com
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
Producer: http://www.lifebeyondpain.com/
At
ImmuneSupport, DVD only
On site: http://www.geocities.com/cfsnova/bookstore06.html
Preparing for Your
Social Security Hearing
Producer: http://www.ssaprepvideo.com/
On site: http://www.geocities.com/cfsnova/bookstore05.html
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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