Introduction
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 https://groups.yahoo.com/neo/groups/CFSupport/info. You can set your subscription to "Special Notices" only if you prefer to receive almost no email and read items on the Yahoo website.
Note: Only leaders can post to our list. Also, we keep the number of emails to far fewer than one per day on average. We know how difficult information overload can be.
As 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.
This newsletter covers What's Happening Now, Upcoming Meetings, Recent Meeting Reports, Media Highlights, Books, Web Updates, Research Participation Opportunity, Getting Help at Home via AIDD, Encouragement, Coping, and Acceptance Excerpts, Growth via Gratitude, and One More Thing: Healthy Home Products.
What's Happening Now
December 2012's discussion meeting / Annual POTS Luck will be on Saturday the 15th at 2 pm at the Sully Governmental Center. It is another opportunity for getting together to talk about matters of mind, of body, and of heart and soul.
Urgent topics such as coping with or quieting this or that symptom come up as well as big picture questions. Why and how is this happening to me? How does illness fit into my life view? What is health, really? We remind each other of the limits of practitioners as well as their skills and tools.
Bring your experience, expertise and questions to share. Bring also any comforts you need: pillows and seat cushions, warm water to drink, floor mat, blanket, ear plugs, safe snack.
Our annual potluck (which we nicked named POTS Luck to honor many members experience with the condition called POTS - Postural Orthostatic Tachycardia Syndrome which has to do with getting more symptomatic the longer one remain upright and not walking or fidgeting and to be an alert that we do potluck events differently to honor our situations.
Last year, our eating meeting was catered to try another experiment. It will NOT be catered this year. That turned out to be just as much work, maybe more, in packing up leftovers so back to tradition this year.
A traditional CFSupport POTS Luck encourages folks who are able to bring something to bring food that they themselves can eat. If there's enough to share, great. If not, that's okay, too. It's also fine to not bring food at all. We advise folks to not tire themselves cooking or assembling for everyone else, particularly since we don't know how many people will attend and so many in our group have food sensitivities to different kinds of food. There's no guarantee that anyone else at the meeting could eat something someone else cooked. If someone does cook something to share, it would be helpful if they know or could bring a list of ingredients."
Please refrain from using products with scents the day of the meeting or bringing foods with particularly pungent or strong smells. Thank you.
Our monthly two-hour plus dysautonomia and gratitude teleconferences continue as do our three Yahoo e-mail lists:
CFSupport, The Art of Healing Dysautonomia with Gratitude and Friends, and EGGdish. Our CFSnova FaceBook page has 134 "Likes" as of this writing.
Upcoming Speakers/Meetings for CFSNova with CFSupport
CFSNova with CFSupport aka NOVA CFS/ME, FMS, & OI Support Group
Meetings in 2013 will continue to be the
3rd Saturday of every month, 2 - 4 pm
James McDonnell Conference Room
Sully Governmental Center
4900 Stonecroft Blvd, Chantilly, VA 20151
Directions
Note: 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.
| Date/Flyer |
Topic/Speaker/Film |
More Details |
| Jan 19, 2013 |
Discussion |
Face-to-face talk time. |
| Feb 16, 2013 |
Discussion |
Face-to-face talk time.
|
| Mar 16, 2013 |
Discussion |
Face-to-face talk time. |
Keep up to date by using our Events
page. Some other groups' events are listed there, too.
Links, Notes, Topics of Recent Meetings
The August 2012 meeting was small, seven people at its peak. Any group size has its advantages, but sometimes a small meeting is very satisfying for the amount of time for each topic and each individual. It was a low-key meeting which suited attendees. Support was given and received. Faces that hadn't been there in awhile were seen. A common thread of overachieving, being achievement/praise-driven, being workaholics, or a combination of those things was discussed as well as how that can contribute to getting and staying sick for some individuals. Examining why we are the way we are now and how we were can help us find ways to be that help us cope with now, to heal those parts of us that can heal even as the rest of us struggles, lags, gets worse.
Brian Walitt, MD, spoke to our group in May and September. Read an August 2012 interview with Dr. Walitt at the Georgetown-Howard Universities Center for Clinical and Translational Science site.
The October meeting had a problem with the room being overbooked, but the November meeting went smooth. November was also a small group which was appreciated. With all our vehicle's for connection, Facebook, CFSupport e-mail, conference calls, with our location, it makes sense that we have some smaller meetings. Glad to hear people like those as well as the speaker meetings and other offerings.
To get notices of upcoming meetings, read more
commentary about speakers and events, sign up for
CFSupport emails.
-
CFS Patients Suffer From Heart Rate Variability
French Tribune -
11-20-12
Conna further informed that these people are not at peace even when they are sleeping. It has been found that their stress-responsive neural systems are quite alert and high when they are asleep. The study researchers were able to reach at the above given conclusion after carrying out an experiment.
-
Settlement Eases Rules for Some Medicare Patients
NY Times -
10-22-12
In a proposed settlement of a nationwide class-action lawsuit, the administration has agreed to scrap a decades-old practice that required many beneficiaries to show a likelihood of medical or functional improvement before Medicare would pay for skilled nursing and therapy services.
Books We're Talking About
Chronic Fatigue Syndrome:
A Treatment Guide, 2nd Edition
Erica Verrillo
Kindle - September 14, 2012
Only $2.99.
Hundreds of pages added. Electronic format eases searching,
not being overwhelmed.
Beating Chronic Fatigue:
Your Step-by-step Guide to Complete Recovery
Kristina Downing-Orr
Paperback - July 2012
For links, more books, audios and videos, see our
Books 2011 and
Books 2012 pages.
Our Newest & Most Updated Web Pages
2012 saw an increase in our CFSnova Facebook page started in 2011. One does not have to be a member of FaceBook to view the page, see the posts. Administrators make meeting announcements and post occasional links to articles on our cfsnova.com site and articles from around the web. Fans post occasional links, news, or questions.
CFSnova.com has been undergoing a behind the scenes upgrade which will make pages load faster, be easier to maintain. Our most frequently updated pages continue to be:
Home
Events
In the Media
Practitioners
Research Participation Opportunity
The Expressive Writing Paradigm:
A Study of Therapeutic Effectiveness for Chronic Pain
clinicaltrials.gov/ct2/show/NCT01639196?%20term=NCT01639196&rank=1
The purpose of this study is to explore the effects of writing about chronic pain on mental and physical health. The effectiveness of two different types of brief online writing interventions will be explored in individuals with chronic pain [self-compassion writing and self-efficacy writing].
Note from the researcher:
Dear Support Group members,
I'm a doctoral student in counseling psychology at University of Maryland. Along with my advisor, Mary Ann Hoffman, Ph.D, I am conducting my dissertation research on chronic pain through an online study. I thought that the members of this support group who experience pain might be interested in participating.
The study is completely online and involves completing 2 surveys and 3 writing exercises. Participants complete either a 20-minute survey or a 20-minute writing exercise once a week for five consecutive weeks. The purpose of the study is to better understand the experiences of individuals who suffer from chronic pain. Some people find writing as a way to record what happens to them or as a way to talk about difficult experiences.
This is your chance to help others in pain and help teach researchers how to better treat chronic pain.
All of your information will be kept confidential and your participation is completely voluntary.
Participants need to be
- at least 18 years old,
- experiencing pain on most days of the month for at least 6 months, and
- experiencing pain that isn't directly caused by a terminal condition (e.g., stage 4 cancer).
If you are interested in participating, please e-mail
chronicpainstudy@umd.edu
For information about clinical trials in general, more studies,
please see our
Trials and Surveys page.
Getting Help at Home at via AIDD
Administration for Intellectual and Developmental Disabilities (AIDD)
www.acl.gov/programs/aidd/index.aspx
(Links updated June 2014)
The AIDD is a US federal agency through which disabled people may find local help as Toni did soon after retiring on disability in 1998. As an agency of the Department of Health and Human Services, AIDD is now part of a new agency called Agency for Community Living, a far cozier name for a helping agency.
Once Toni applied for help from the DDA (as it was known in the '90s) and approved, she was placed on the DDA waiting list and assigned a service coordinator who visited her yearly, getting Toni help through a church (which was problematic but for which I remain grateful) through the local Service Coordination Agency.
Years later, Toni's service coordinator noticed the 11 bags of trash in her kitchen, the fact there was no longer any place to sit in the living room other than Toni's recliner and a folding chair in the foyer which had to be folded and put away to get out the door.
Eventually, thanks to her service coordinator, Toni received "emergency" aide through another local agency. Five hours a week is enough to get dishes done, trash out to the curb, and a few other things including putting away clean clothes after laundry is done. Five hours is strenuous enough to have to direct someone how to help!
We recommend people with limited resources in need of help around the house or aides to get to appointments, etc. call the AIDD (federal) agency to ask for an application for help through AIDD. It may take awhile, take detours and other referrals so starting sooner rather than later. Here is their contact info. To read more, see
AIDD website.
AIDD Phone: (202) 401-4541 (updated June 2014)
For information about help at home in general,
please see our
Q & A, Our Way Help Managing the Home page.
Encouragement, Coping, Acceptance Excerpts
10 Things I've Learned From Living With Chronic Illness
by RA Guy
Nov 5, 2011
6. Achieving acceptance is hard.
(I used to think that doing so meant "giving up.")
Just when it feels like I've accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don't think there is such a thing as "complete" acceptance... there's just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
|
Confessions of a Sick Person
By Toni Bernhard, J.D.
October 1, 2012
- I don't shower every day.
Nope, I don't. This would have been unimaginable to me before I got sick. But you know what? My skin seems to appreciate it.
|
Growth via Gratitude
Elly's Gratitude Group (EGG)
is a mind, body & soul discussion group for people with CFS,
ME, FMS, & OI. Members help each other practice appreciation to
accelerate healing.
We have teleconferences, a Yahoo E-mail Group called
EGGdish,
and occasional meetings. As time goes by, our gratitude practice grows, evolves, and we ourselves change, changing the way we talk of gratitude, our groups, our lives, usually for the more enjoyable.
Here is how Toni Marshall recently described our group:
"We may strive for positive results in our lives through gratitude practice, but we also have CFS, OI, FMS and other related or unrelated chronic conditions so we don't guarantee positivity.
Our gratitude group was organized by Elly Brosius as a place to examine what we have been taking for granted by expressing gratitude for those things to witnesses who suffer similarly.
We also catch ourselves and each other using language that dissuades gratitude practice. Language like good or bad or perfect are not descriptive enough to express what I mean so, whenever I first type such words, I ask myself "what do I really mean to say here." By the way, I am grateful typing makes such changes possible, seemingly seamlessly.
We also find we appreciate help that gratitude practice provides to overcome our usual judgment in conflicts with others such as family, friends, neighbors, professionals, telephone and cable company personnel, etc. For instance, I had to call my supplement company 5 times to get what I ordered - ack and grrrrrrrrrrr, and, I am grateful some supplements were delivered today.
Sometimes it takes a very long rant to get to any gratitude at all. But we get there. Sometimes entertainingly, sometimes boringly, sometimes achingly, but we usually find something for which to be grateful. Or lots or just enough.
If you still feel like this is a practice you might like to join, let me know. You may just read for awhile if you like or jump right in and express some gratitude for whatever.
Some of us read everything written to
EGGdish, practicing our appreciation of everybody's practice of gratitude."
One More Thing: Healthy Home Products
Shopping ideas / Discounts / Special Products
Member Terry Sopher, Sr, a very educated member about sensitive products and/or or quality products for sensitive people, who has shared many items with us before. Now we have a more comprehensive list about the products he has become a reseller for since they have helped him so much.
Terry uses these products himself. He became involved in a business to have discounts for himself, to make money to pay for his having to live with illness, to pass along some discount to others in the group in similar situation who need sometimes expensive items for
filtering air and water, ...
organic clothing, cosmetics, caulk
special, harder to find, or high quality supplements
more
See the list with links to products at manufacturer's websites:
cfsnova.com/HealthyHomeProducts.html
To contact Terry about the specifics of the discounts to our group members, to learn more about
why this or that product has made a difference, reduced symptoms for him, others,
his phone number is
703-256-2836,
his email is
HealthyHomeProducts@verizon.net
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