The Northern Virginia (NOVA)
Selections from Emails, Meetings, and More
Welcome to the Rundown (pun intended), a summary of news and happenings for the Northern VA CFS/ME, FMS, & OI Support group aka CFSNova (website) and CFSupport (e-mail list). Our members often feel rundown to the point of non-functioning and such impaired cognitive function that items must be repeated over and over to be heard or understood. This is a rundown for the rundown folk and their carers.
This newsletter covers, repeated from just above in a different format for those who read prose and lower case easier than lists: the ME/CFS Assistant app for monitoring post exertional malaise, introducing Elizabeth Christy, her Why Does Mommy Hurt? book & her community for parents with pain, easing eye strain with kindle paperwhite, members kickstarting a draft into a dream, poetic congratulations, Renee Katz's changing the world by being real, the synergy trial recruiting folks to try K-Pax immune and energy nutrients with low dose ritalin, a Georgetown University exercise and brain scan study, Mitch Lambros coming to speak to us Sept 20 on applying for social security disability, the meeting location and remaining 2014 dates summary chart, highlights of items in the news, the CFS advisory committee meeting June 16-17, practitioner workshops, seminars, and books, useful bits, and how to get our CFSupport e-mail.
Please visit CFSnova's About Us for a rundown about our group, our history, our facilitators.
Our June 21, 2014, 2 pm meeting at the Sully Governmental Center will be discussion in the first hour and a presenter in the second hour about ME/CFS Assistant, a smart-phone app and wrist activity monitor system for recognizing how one's individual activity correlates with post exertional malaise (PEM).
June 21, 2014
(beta testers needed)
When one can more accurately identify patterns of activity that provoke symptoms and honor their toll on the mind and body by reducing them going forward, deeper rest and recovery can happen. Prevention of relapses can even happen!
The ME/CFS Assistant being developed to help individuals discover what is working and what is not with their current treatment regimes. For example, people might discover more quickly if there exercise program is helping or too ambitious for right now. It can be difficult to notice and more difficult to accept that an activity is a problem if it helps pain and fatigue, but makes cognitive function worse. If one's activities are making one too tired to answer questions on the app, that, too, could be a sign there is too much to handle in life right now and scaling back is necessary for recovering some capacity.
The developer of ME/CFS Assistant is someone who has seen ME/CFS up close. He is motivated and dedicated to bringing this tool to market. All profits from this product will be donated to ME/CFS research. Beta testers are being recruited now and at our meeting. Write firstname.lastname@example.org for more info or to sign up now. See also the ME/CFS Assistant Facebook page.
Saturday, June 21, 2014, 2 - 4 pmSully Governmental Center
As always, bring your experience, questions and comforts to the meeting. Comforts may include pillows and seat cushions, warm water to drink, a floor mat, blanket, ear plugs, a safe snack, and a sweater and throw in case the air conditioning is too high.
Please, please, please refrain from wearing scented products. Even mild smells can make many of our members feel unwell. Thank you.
Elizabeth M. Christy is a wonderful resource and new member to our group. She is author of the blog The Potomac Falls Mama, author of the new children's book, Why Does Mommy Hurt?, and founder of the non-profit Bottles and Books. Elizabeth has also just started a Parents with Pain Community web site which has a Parents with Pain Facebook Group.
Elizabeth M. Christy and James G. Miller, author and illustrator of "Why Does Mommy Hurt? Helping Children Cope with the Challenges of Having a Parents or Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease" (appropriate for ages 2-10), will be selling the book for 25% off ($7.50), and autographing copies on Sunday, July 20th, 6:45-8pm, at Herndon ArtSpace, 750 Center St, Herndon, VA 20170. For more information, please visit www.whydoesmommyhurt.com, or email: ParentsWithPain@gmail.com.
July 20, 2014
CFSnova members attending are beginning to plan meeting for dinner before this event! There is a rumor that the president of the National Fibro & Chronic Pain Association (NFMCPA), Jan Chambers, will speak at the event. The NFMCPA did a press release applauding the book Why Does Mommy Hurt?
November 15, 2014
Support for Parents with Pain
Ms. Christy has just been scheduled to be our November 15 CFSNova meeting speaker. We are going to do it. Tackle, embrace, and surrender to this very big topic surrounding having conditions and being a parent, or not being a parent, or/and not being the parent you imagined you could be. It is huge. Everyone bring Kleenex, if not for yourself, for the people on either side of where you sit.
Keeping the emotions inside and deep down is necessary at times, and at other times we can feel and process some of the grief, sadness, self-punishment (guilt), anger, frustration, and more. Especially in a supportive setting with experienced, thoughtful people that will attend this event, we can make a healing place to discuss the topic, share coping ideas, and just let some stuff out that we haven't quite let out yet. We won't have to carry such a heavy load after, and we'll have this tool, this children's book tool that can be used with children (or adults!) to help people know more how to interact with and help us.
Elizabeth is joining our group and may be a somewhat regular meeting attendee starting in June in addition to being our featured presenter on Nov 15. To begin to get to know her and her story, listen to an interview by NFCPA president Jan Chambers on blogtalk radio from July 13, 2014: Elizabeth Christy, author of Why Does Mommy Hurt? shares insights about kids.
Kindle Paperwhite models, available through our Amazon Store, are getting rave reviews by our members because of less eye fatigue and strain. Users with the other kind of devices can turn down the brightness especially in low light conditions, but that only goes so far. The Paperwhite for reading books has made reading possible for some who had given it up completely!
Other features our members appreciate is the battery only has to be charged monthly instead of daily, it is light weight and can be held more easily in one hand than some other reading devices, and there is no glare in sunlight.
Barbara, an actual user, writes:
"Back-lit devices like computer screens, iPads (and other tablets), smartphones and TVs shine light through the screen directly into our eyes. This can quickly exhaust anyone with Chronic Fatigue Syndrome, Fibromyalgia, Orthostatic Intolerance and/or other neurological conditions. Back-lighting can cause headaches, fatigue and overstimulation in perfectly healthy people, too! The effect is more pronounced for those of us with these illnesses.
The Kindle Paperwhite is 'front-lit:' it has a built-in LED light underneath the frame that shines onto the display. The LED bulb is hidden, so it can't shine directly into my eyes. The lighting effect is similar to that of a lamp or clip-on book light: it shines light down onto the display from above instead of shining light through it like a back-lit iPad does. For me, it's actually better than reading a book with a clip light because there is no danger of accidentally shining the light directly into my eyes, and the illumination of the Paperwhite is more even and gentle.
The brightness/dimness of the light is adjustable. I have mine turned down very low. The text is so crisp and the contrast so clear that I find it easier to read than a paper book, even with the light turned all the way off. I compared the text of the Paperwhite to a regular Kindle, and the text of the Paperwhite is crisper. As with all Kindles, you can increase the size of the text. You can't do that with a paper book! This font-size-adjustment feature alone is a wonderful adaptive technology that helps tremendously with my unpredictable/unreliable ability to focus my eyes. You can also increase the spacing between the lines of text, which I found extremely helpful. After years of not being able to read books, I discovered I could read again with large, widely-spaced font. My vision is normally pretty good, so it didn't occur to me that font size and line spacing might make a difference. For me, it makes it possible for me to read books again.
Although the Kindle Paperwhite offers a couple of advantages (gentle lighting and crisper text) over the regular Kindle, if you can't afford the Paperwhite, the regular Kindle is still a good option that might help make reading possible again. I've noticed that the regular Kindle often goes on sale around major holidays."
For links to books for reading on your Kindle Paperwhite, see Books 2014 and Our Amazon Store. For thoughts on the many factors that factor into difficulty reading, visual symptoms, and comprehension problems, see our Q&A, Our Way page on Reading, Seeing, Understanding and Vision Problems.
Member and CFSupport moderator Sarah Councell Turner and her husband Bob Turner have a Kickstarter campaign this June for getting Bob's book Our Father Who Aren't In Heaven: Subversive Reflections on the Lord's Prayer published. Sarah contributed as Special Assistant / Cue Card Lady for the video. This photo of the couple is from Bob's Portfolio.
Publisher Wipf and Stock has accepted the book for publication, but as they are a small firm, authors have to pay for several up front costs.
Sarah is a special lady due credit for adapting to her conditions and finding ways to pace her participation in a Kickstarter project and for being a special assistant in our support group via her in-depth sharing about symptoms, frustrations, insights, set backs and healing moments. We are grateful she remains connected to us though she is no longer able to attend meetings.
Contributors can donate as little as $1 and payments can be made via Amazon. Donations of $20 or more will qualify for copies of the book. A contribution of any size is welcome and appreciated. Sarah and Bob have been through so much and remained with our group and supportive of those with CFS. If you can help with words of support or dollars that would be awesome. Birthing a book is a big project. It can lead to so many new options for the author and provide a family some financial security. The last day to donate is July 5th.
May this project bring the Turners life, much liberty and independence, and some energy for their pursuit of happiness! The title sounds like it could spark some fireworks, too. Healthy debate - the highest potential of America.
On June 9, member Melinda M. was named a winner of the CF Alliance 2014 Seasons of Hope Awareness Poetry Contest on CF Alliance's Facebook Page. That's marvelous for Melinda and us! Her words will be placed on awareness postcards and available for purchase. Wow!
As our members go through the healing process, especially in our writing group for gratitude practice, poetry starts happening. The heart starts talking more as the brain calms and quiets. Sometimes art and crafts start taking on deeper meaning. See examples of our art and artful words in the CFSnova Art Gallery.
Member Renee Katz has a new book out, a book of healing poetry with the same name as her music cabaret singing CD from years back. The titles are Never Been Gone. The new book comes in digital form or in print with a CD.
Renee, pronounced reee-knee, lives in New York City. Her story and poetry of healing is not (yet) from symptoms normally discussed here, but from much of the trauma she experienced from having been pushed in front of a moving subway train and the trauma of a media attention frenzy.
The line "change the world by being real" is from one of the poems in the new book called Never to be Silenced. That poem also urges us to not be scared to feel and deal. Thank you, Renee! You are an incredible example coming from that violence and being the first to have hand re-attachment surgery. Read more of this poem at Renee Katz Music. Also on that page is a sneak peak of the book that ends with the following.
"It's taken years for me to come to this place of gratitude. I know how hard it is to face a challenge, to face uncertainty, to face fear ... and what it's like to suppress those feelings and pretend everything is okay. I understand why it's so easy to just go through the motions of life."
"If you allow yourself to feel those feelings, embrace them, and never erase them, you will be amazed at the journey that awaits you. I continue to embrace life joyfully, grateful to add to the layers of perspective, compassion, and love to my soul."
Renee is sending a book with CD of Never Been Gone down for us to have at meetings or to draw from in our gratitude group. A Queens, NY, newspaper article dated June 12, 2014, discusses the book and author, Flushing woman pushed off subway platform releases book.
K-PAX Pharmaceuticals is the creator of the over-the-counter K-PAX Fatigue Protocol which they expect to get FDA approval for as the first safe and effective therapy for CFS. The Fatigue Protocol is for immune functioning and mitochondrial health and energy production. A one week trial size is available for $39.95. 1-877-777-5729.K-PAX is now involved in a drug trial that includes nutrients as well, The Synergy Trial. Low dose methylphenidate (generic ritalin) plus a highly potent combination of mitochondrial support nutrients (the ME/CFS Nutrient Formula) was recently provided to ME/CFS patients as innovative therapy and many patients reported rapid and sustained reductions in fatigue as well as improvement in concentration (brain fog). The Synergy Trial represents the next phase of study for this intervention. It is believed that the mitochondrial nutrients help the methylphenidate work better and be better tolerated.
The Synergy Trial has already enrolled 90 patients. 40 additional patients are now needed by August 1, 2014.
The four sites are located at the following clinics:
Palo Alto, CA (Jose Montoya, MD)
Salt Lake City (Lucinda Bateman, MD)
New York City (Sue Levine, MD)
Ft. Lauderdale (Nancy Klimas, MD)
The Synergy Trial is for 3-months and there are 4 in-person visits and 2-3 phone calls. Remuneration is provided at $50 per visit (after the screening visit) to cover expenses. A free 3-month supply of the ME/CFS Nutrient Formula will also be provided to all who complete the trial.
K-PAX has posted a webcast covering all the Synergy Trial details including the mechanism of action and the early data that has been collected.
More information about the K-Pax Synergy trial is available through "The Hope Line" at 1-855-318-HOPE (4673) and via K-PAX Research Coordinator D.email@example.com.
Principal investigator James N Baraniuk, MD, is recruiting volunteers in Washington, DC.
Study Purpose: to understand Exertional Exhaustion in Chronic Fatigue Syndrome (CFS)
Who: Adults (over 18 years old) with and without CFS are invited to participate.
What: Subjects will have magnetic resonance imaging (MRI) brain scans then bicycle exercise tests. Subjects will stay overnight, then have a 2nd exercise test and MRI the next day.
Where: Clinical Research Unit, Georgetown University, Washington D.C.
Compensation: Time and travel will be paid.
Georgetown University Medical Center
Telephone: (202) 687-8231
E-mail: firstname.lastname@example.org or email@example.com
CFSnova and FM Fight Club are planning a joint meeting about this study. Stay tuned.
For information about clinical trials in general, more studies, please see our page about Trials and Surveys.
Attorney Mitch Lambros will visit us again to describe in detail the application process for SSDI with special considerations for people with CFS, FMS, and similar.
September 20, 2014
Applying for Social Security Disability Income (SSDI)
Mitch will likely go over the highlights of SSA rulings on CFS (updated this year) and FMS and many other considerations including keeping a paper trail of documentation over the years before and while on benefits and reviews of cases. Mitch answers questions and shares relevant stories. He also takes a lot of time to explain that people who are on disability just need some help. They're not functioning right now. It isn't their fault. He is very understanding and compassionate. Even those who don't need to or can't apply or already have benefits attend Mitch meetings for the care and knowledge of CFS and CFS practitioners shared.
Here are some useful SSA information for those contemplating SSDI now:
Social Security Administration (800) 772-1213,
How you Qualify for SS Disability
SSR 14-1p: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)
SSR 12-2p: Evaluation of Fibromyalgia
SSR 11-1p: Procedures for Handling Requests to File Subsequent Applications for Disability Benefits
To contact Mitch for a complimentary phone consult about your case, call him. J. Mitchell Lambros, at (800) 652-0044, or visit his page at LambrosLaw.net and fill out the "Quick Contact."
To read our facilitator Toni Marshall's recently published piece on the new ruling 14-1p for CFS, see her article Applying for Disability? The Guidelines for CFS Have Changed".
For 2014, meetings of the Northern VA CFS/ME, FMS, & OI Support Group, also known online as CFSNova with CFSupport, will continue to be the 3rd Saturday of every month, from 2 - 4 pm, near the Westfields Conference Center in southwestern Fairfax County, about 20 miles from Washington, DC, and Maryland.
Sully Governmental Center
James McDonnell Conference Room
4900 Stonecroft Blvd
Chantilly, VA 20151
Our directions page includes a photo of the building. The building is very close to both the intersection of Westfields Exit off Route 28 (use the west exit from 28) and the intersection of Stonecroft Blvd and Westfields Blvd. Follow signs toward conference center, but turn immediately left into parking lot after turning right onto Stonecroft Blvd from Westfields Blvd.
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.
June 21, 2014
(beta testers needed)
July 19, 2014
July 20, 2014
Month? Day?, 2014
Event in works with FM Fight Club (Vienna or Arlington) on exercise brain scan MRI study
August 16, 2014
September 20, 2014
Applying for Social Security Disability Income (SSDI)
October 18, 2014
November 15, 2014
Support for Parents with Pain
December 20, 2014
POTS Luck Social
Bring a dish you can safely eat.
Visit our Events page for the most up-to-date meeting information.
Market failure can be sign of fatigue
Reuters Opinion / 06-11-14 / by Edward Hadas
Chronic fatigue syndrome (CFS) — also known as myalgic encephalopathy (ME) — is a case in point. The economic benefit of treating this difficult condition should be material for patients, drugmakers and society. Yet the treatment is poor.
Baffling Chronic Fatigue Syndrome Set for Diagnostic Overhaul
Scientific American / 05-16-14 / by Katherine Harmon Courage
Researchers might soon redefine the mysterious condition, while the latest findings point to the role of brain inflammation.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) to the secretary of health will meet from 9 am to 5 pm at DHHS in DC on Monday, June 16, and Tuesday, June 17, 2014. CFS is the only condition to have its own high-level committee like this.
The meeting will be live-video streamed at hhs.gov/live and archived through the CFSAC web site: hhs.gov/advomcfs/. Listening-only via telephone will be available on both days. Call-in information will be posted on the CFSAC Web site.
In-person registration and written submission dates have passed. Full meeting details are at the federal register notice. Many of our members and leaders have participated and attended in the past. Members who watch who are moved to write up their observations or feelings for CFSupport are welcome to send them in to us for just the leaders or to share with the group, with a name or anonymously.
Health care providers on our practitioners list have scheduled classes, free seminars, and published books. Here are a few.
Sun, June 22, 1 - 5 pm in Centreville, VA
Sat, July 29, 10 am to 2 pm, at Tri Therapeutic Massage in Reston, VA
Find out more at I Embrace Wellness. (571) 232-9979
Thursday evening options, 7 - 9 pm:
June 19 or July 10
Saturday 10 am to 12 pm selections:
June 28 or July 26
Held at Bethesda Crossing, Suite 760 in Wisconsin Tower East.
Find out more at The Gilbert Clinic. (301) 215-4177
Book published 2014:
Total Recovery: Solving the Mystery of Chronic Pain and Depression.
See also Dr. Kaplan's website.
Brian Walitt, MD, has moved full time to NIH. His FM clinic at Georgetown is closing soon. Patients received a letter this week about the shift where he states it is with heavy heart he reports not being able to interact with patients anymore in clinic, and where he invited us to keep him informed of life and health developments by e-mail.
Read more about POTS - Postural Orthostatic Tachycardia Syndrome has to do with getting more symptomatic the longer one remain upright, standing or sitting upright at a table or on a couch with feet down, and not walking or fidgeting. When you understand the orthostatic intolerance symptoms, POTS or its alternatives, you can really make great connections about how to manage and reduce severity of symptoms.
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.
To receive e-mail of items as they happen rather than wait until they've been compiled into a newsletter, please join our Yahoo group CFSupport. Subscriptions can be set to "Special Notices" if you prefer almost no e-mail and read items on the web. Alternatively, one can subscribe by sending a blank e-mail to firstname.lastname@example.org to start the joining process.
Note: Only leaders can post to our CFSupport, announcement only, list. Members can send in suggestions or requests for posts that go through the moderators. This way, we keep the number of emails to far fewer than one per day on average. We know how difficult information overload and overwhelm can be.
Yahoo ID-holding members of CFSupport who can remember or find their Yahoo passwords may browse and search our archives, view our calendar, download files, see the rarely used rideshare database and more. All members may receive our current updates of interest regarding CFS/CFIDS (chronic fatigue syndrome) / ME (myalgic encephalomyelitis), FMS (fibromyalgia syndrome), and OI (orthostatic intolerance including POTS and NMH) via e-mail or the web.
Disclaimer: CFS Nova contributors are volunteers with the experience of puzzling syndromes with no intention to act as medical, counseling, or legal professionals. Please use or ignore our content at your own risk and for your own reward. Seek qualified practitioners for diagnosis, treatment, and legal matters.