Newsletter: Selections from Emails, Meetings, and More
Welcome to a CFSupport Newsletter! To receive our emails and
news items as they happen rather then wait until they've been compiled into a newsletter, please join our Yahoo! Group at
http://groups.yahoo.com/group/CFSupport. You can set you subscription to "Special Notices" only if you prefer to receive no email and read items on the Yahoo website.
Only leaders can post, and we keep the number of emails to far fewer than one per day on average.
a member of our CFSupport Yahoo group, you would be able to browse and search our archives, view our Calendar, download
files, use our rideshare database as well as receive current updates of interest regarding CFS/CFIDS (chronic fatigue syndrome), FMS (fibromyalgia syndrome), ME (myalgic encephalomyelitis), OI (orthostatic intolerance including POTS and NMH), and more.
Please visit About Us for more introduction, or check out the
Newsletter Directory or Home.
is heart month and another opportunity for getting together to talk
about matters of mind, of body, and of heart and soul. No speaker.
Bring your expertise and questions to share.
NOVA CFS/ME, FMS, & OI Support Group: Upcoming Speakers/Meetings
Meetings going forward are the
3rd Saturday of every month, 2 - 4 pm
James McDonnell Conference Room
Sully Governmental Center
4900 Stonecroft Blvd, Chantilly, VA 20151
view our directions as internet maps and GPS will talk you too far
north on Stonecroft. The building is very close to intersection of
Stonecroft Blvd and Westfields Blvd, very close to intersection of
Westfields Exit off Route 28.
Please be aware traffic on Route
66 on Saturday afternoons is heavy. Consider taking Routes 50, 29 or
267 (Toll Road) to Route 28 or coming some other back roads. Thank You.
|Feb 20, 2010
||Face-to-face talk time.
|Mar 20, 2010
||POTS Luck Social
||Bring what YOU can eat safely.
|Apr 17, 2010
||Face-to-face talk time.
Keep up to date by using our Events
page. Some other group events listed there, too.
December 2009 Meeting Canceled Due to SNOW.
POTS LUCK Social - Rescheduled for March 20, 2010
January 2010 Meeting Rundown
See full meeting rundown in CFSupport archives.
This is the short version.
The Northern VA CFSupport January
2010 meeting had great information sharing, a show and tell of mottled
skin, and creativity overflowing.
One discussion was about whether we look normal to
others or not. Yes, there is that component of looking normal or not
too sick, but with the unsteady ways people walk and move, and how
heads tilt over because they are to heavy to hold up, and with the extra
stiffness in posture for some, and with the mottled skin or paleness, with the
bouncing knees or busy hands, there is plenty to notice about us in
Previously, the word summary has been used. This month, we switched to a "Run Down."
2. Mottled Skin - signs of poor circulation, being past your point of being fine
3. Our Group within the Group of Crafters
Anyone remember the book by Katrina Berne,
CFIDS Lite: Chronic Fatigue Immune Dysfunction Syndrome with 1/3 less seriousness
in this book with cartoons and irony and absurdity about being ill with
CFIDS, there are 3 jobs suggested for people with CFS. One of them is
Our discussion last Saturday really reminded me
of that. Members talked of beds, of being in stores and lying on this
and that mattress for hours, about how the right mattress was found,
even as others complained of drawbacks about same models.
I Sleep Beds
Sleep Number by Select Comfort
Cost-co memory foam mattress
person loved climbing into a bed with COLD sheets. The way she said
cold you could just feel the capital letters! That helps her cool down,
relax. Another turns the
heater on for a few minutes before she gets in, then turns it off once
in the bed. That helps her symptoms stay calm.
The consensus was
not about a particular kind of mattress, but on how important it is to
have one that supports or comforts you, that provides adjustments if
that helps you adjust to your varying symptoms. It was also about it
being a good investment of time, of energy, of precious finances to get
something that truly supports helps since we may spend so much
time in or on the bed.
Another thing that became clear was that
we were describing ways our nervous system and symptoms were responding
to stimulii and how we were using that feedback to help ourselves.
Because the body does some major changes in response to too much cold
or too much heat or or too much hardness or so much sinking in so far
you feel like you’re being squished, there were many clues and things
to explore about our reactions.
Some beds or frames or mattress do
not allow for the recommendation for people with dysautonomia to tilt
the whole bed frame, so the hips and kidneys will be slightly higher
than the feet. (Wedges don’t work for this because they only raise head
above stomach and kidneys. Both wedges as pillows and tilting the bed
frame (head-up) help with reflux, GERD, heartburn, but only the tilt of
the whole frame helps reduce dehydration and improves potassium
retention in the blood so one may move around a bit easier in the mornings.
Staying at a hotel was highly recommended as an “all night” way to really try out different mattresses.
I started with a joke from the CFIDS Lite book, talking about beds is very important and useful
and serious. We won’t all end up with the same bed, though there are
some more popular than others. The Sleep Number fan at the meeting says
the sales person told her that almost all people with FM she knows
choose the same model of Sleep Number. Talking about these issues helps
us discover more about the health and comfort considerations of mattresses and beyond.
Perhaps we can be models, too, …. of mottled skin,
a sign poor or altered circulation
had a really good example of arm skin mottling at this meeting. It was
on the arms, bright red mottled in with pale. Sometimes people call it
patchy. My dictionary defines mottled with “smears of color.” How
frequently on legs, we see the darker blue or purply mottling with
paleness. The bluish more solid skin is often referred to as dusky.
or drained color, can happen of a variety of
skin colors. A person’s skin color, especially in the nail beds and
thinner areas with look different when there is a lot of fresh red
oxygenated blood in it, vs when there is less blood in total, vs when
the blood is bluer from having given up its oxygen, i.e., when the
more from veins rather than arteries.
Doctors who know to look
for the dusky skin may make patients still still with shoes and socks
off and pant legs rolled up. For those vulnerable, this will aid the
skin color changes and be the
evidence of circulatory problems.
If you are already very
symptomatic, you many be
already bluish and mottled, just from the anxiety of being at the
office visit. The test can provoke greater severity so you may want to
skip it. The longer one stands, if prone to this, then the more
more solid bluishness climbs up the leg. One
doctor I went to asked me to sit down because he was getting
watching it. I was uncomfortable and becoming more so, but it was so
“normal” to me I just kept increasing my will to stand there,
increasing the lock my joints mode, increasing the call on my
adrenaline to keep standing to do what was necessary to get help.
he finally felt uncomfortable and had me sit so I could stop trashing
myself and calling it a good thing. There was plenty of evidence
without this test that I had the problem, from history, from other
tests, but, it was quite striking for both of us to see it once again.
It did provide me with more motivation to help my circulation in all
ways I could learn and implement safely. Gratefully, I've learned this
forced expression doesn't lead to treatment and I can stop doing it,
and can invest the time in finding out how to alleviate it in regular
The mottling on
someone with FMS, or CFS, or OI, is usually a little different than you
see if you google it and find pictures of it in other illnesses. It
might be helpful for us to share pictures of our form of it.
Mottling can be a sign that circulation, which
is controlled by both the nervous and circulatory systems at the very
least, is under more strain than usual and not up to evenly
distributing the blood anymore. Some areas are getting too much, some
too little. Some blood vessels are constricting too much, some dilating
too much it seems.
When we have serious conditions, seriously
affecting our lives. Respecting the precious energy we have left and
respecting what capacity to circulate blood we have left becomes
particularly important and more serious than ever.
skin is another great clue, a great conversation starter from our
bodies. We can listen and offer something back. E.g. “Thank you body
for showing me this pattern of skin. I acknowledge your strain and your
art and how you are doing your best to move my blood around in this
situations, under these conditions."
Our Creative, Crafty, Jewelry and Clothing making Group within the Group
At least 3 of our attendees regularly bring craft projects to meetings,
two do beading and one knits. This month, two of them were crafting,
and a first time attendee was pleased to find and meet people to
immediately have two things in common with, conditions and creating
wearable art. She was wearing earrings she made. (Photos are in our CFSupport Attachment archives.)
one point, it came to our attention that a big-ish copper- or amber-ish
shiny bead had been dropped on the floor. The hunt was on, together
about half of us were trying to see the bead. It was a sparkly one, but
that didn’t help us find it though we looked at so many angles. I found
two tiny beads on the multicolor carpet from some other group’s craft
project among staples and snips of paper.
The opportunity to
stretch a little helped me, a good reminder that when doing fairly
well, it is still helpful to move around as tolerated to help that
The search for the bead on the floor, together
looking one small piece of a larger work of art, made me see how it
relates to our seeking and searching for something together…. kind of
like the seeking and searching together for ideas for coping, doctors
and treatment, and the seeking and searching together for support,
understanding, non-judgment, acceptance and compassion. Finding stuff
from other groups seemed to suit me well ‘cause I do that all the time,
use materials and ideas from other support groups.
May we all continue
to find the beads we were looking for and the surprise ones we didn’t know
would be there.
To get notices of upcoming meetings, read more
commentary about speakers and events, sign up for CFSupport
Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?
Discover Magazine - 1-6-2010
Mother cleared of ME daughter's attempted murder
BBC News - 1-25-10
A mother has been found not guilty of the attempted murder of her severely ill daughter who suffered from ME.
Woman finds relief from fibromyalgia pain
Suburban Chicagonews.com - 1-6-2010
Quest inspires Cherie Stechly to write book
the assistance of a supportive physician -- Dr. R.W. Schubert of
Joliet, who also wrote a forward to Stechly's book -- Stechly reviewed
her life history of illnesses, her environment and her lifestyle
practices. She then overcame her symptoms through researching possible
antidotes, which included dietary changes, stress reduction, practicing
a positive attitude, applying spiritual principles, adding vitamins and
herbal remedies. Stechly said her fibromyalgia is now in full
remission. "I took full responsibility for my illness and it was not
easy," Stechly said.
For more media coverage, see our In
the Media page
Awareness for CFS Media page at CFIDS.org
Restful Insomnia: How to Get the Benefits of Sleep Even When You Can’t
The Healing Powers of Chocolate
Innovative Holistic Approaches to PTSD and Life Stress: Path to Success and Freedom
Overcome Your Fibromyalgia
Living Well with Pain and Illness: The Mindful Way to Free Yourself from Suffering
Chronic Fatigue, ME, and Fibromyalgia: The Natural Recovery Plan
EFT for Fibromyalgia and Chronic Fatigue
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection
A Mindfulness-Based Stress Reduction Workbook
Awakening to the Secret Code of Your Mind: Your Mind's Journey to Inner Peace
The Fibromyalgia Cookbook: More than 135 Easy and Delicious Recipes to Fight Chronic Fatigue
Muscle Pain: Diagnosis and Treatment (Textbook by Dr. Gerwin of Bethesda)
For links, more books, audios and videos, see our Books 2009 and Books 2010 pages.
Our Newest &
Most Updated Web PagesIn 2009, we changed our domain
name to cfsnova.com. Please update your bookmarks.
C -- for CFS, CFIDS, and CFS/ME
F -- for Fibromyalgia syndrome
S -- for all the similar Syndromes we invite / include in our group
NOVA -- for Northern Virginia
Practitioner Updates - new Myofacial Trigger Point Therapy Section
Events 2010 added
Our most frequently updated pages include:
Events, In the Media,
Groups & Association,
The Creative for A Second or Two Project
Following the success of Creative for a Second (www.creativeforasecond.com), Melbourne artist and designer I & The Others (a.k.a. Kirrily Anderson) has just launched her next CFS/ME/FM project, Creative for a Second or Two.
Inspired by the 1000 Journals Project (www.1000journals.com),
Kirrily is organising to send blank journals around the world to people
with ME/CFS/CFIDS/FM for them to fill up with anything they like -
artwork, thoughts, photos, found objects, deep dark secrets!
person will have a journal for two weeks and then post it [send it by
snail mail] on to the next person on the list (there will be a mailing
list in the back of each journal).
Should a contributor not be
well enough to contribute anything within the two weeks they can add
their name to the bottom of the list so the journal can come back to
them, but it must keep moving. (The project is about expressing - not
making a work of art necessarily, so even during the time of a crash,
some frustration may be expressed in some way on the pages!)
There will be photo updates on the Creative For A Second Facebook group
(feel free to join - just search for Creative For A Second under the
groups section). Contributors can scan or photograph the journal while
they have it - even make a movie, and upload it to the group so
everyone can see how the journals are progressing!
months or so of circulating all the journals will be returned to
Kirrily and she will take them apart and have all the pages on display
as part of an exhibition, starting on Awareness Day (May 12, 2011).
With finances permitting a book will also be published.
a project for anyone and everyone with this debilitating illness - not
just "artists" - we all have creative bones within us!
For more information, or to register your interest (just send an email with your postal address), email Kirrily directly at email@example.com
read and view the first book full size, Creative for a Second: Creative Works by People Living with CFS/ME, visit
the website and click on Open Publication. A few copies of the print
softcover edition are still available.
Encouraging E-mail (It might take an e-Village)
Toni and I joke about and are very serious that it takes belonging to many
e-mail lists of encouraging quotes or encouraging stuff to feel
encouraged. We cite two main reasons:|
1) With all the challenges
we face, with all those years of self talk amounting to putting
ourselves down, we're gonna need many bits of encouragement throughout
the day in our present to rebalance. We’re gonna need many reminders to
view the world a little differently, to look at perhaps some smaller
details we missed or some "bigger pictures."
2) Some of the
quotes or other words in the daily or weekly emails aren't as
encouraging as one is hoping for. Instead, they actually reinforce the
old ideas suggesting you are aren't good enough, or that you could do
more, do more, do more, should do yourself in doing more.
better each day at deleting faster those that don't feel encouraging,
and lingering more on the ones that "glow" with us, where we are that
day. When you only get one a day, and its a stinker or just
Here are links to some e-mail lists that we belong to now, have in the past, or are just starting with, in no particular order.
are more out there, but we trust that if you are open and look for
them, you will find the ones that best suit you (or you can unsubscribe
and can seek another five to try).
- Elly and Toni, early 2010
The EGG Dish
Elly's Gratitude Group (EGG)
is a mind, body & soul discussion group for people with CFS,
FM, & OI. Members help each other practice appreciation to
We have teleconferences (see table below), a Yahoo E-mail Group called EGGdish,
and occasional meetings in Washington DC area restaurants.
EGG meetings are:
Feb ??, 2010
?:00 PM EST
for Dial-In Number and access code.
Dial number, enter code, followed by #.
Say a name (or not), the # again.
Mar 29, 2010
1 PM EST
for Dial-In Number and access code.
Dial number, enter code, followed by #.
Say a name (or not), the # again.
One More Thing: Ashely raised $1000 for CFIDS!
Next HTML Newsletter