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Upcoming Events
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Date and Time to be Determined: Q&A About Lyme Disease; Webinar
Every Thursday from 7-8 PM (PDT): "Chat" Night on Ning!
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The Outs and Ins of OI (Orthostatic Intolerance)
By K. Kimberly McCleary, President & CEO,
CFIDS Association of America
With summer heat on its way, and because treatment of OI through medication, dietary and postural approaches can provide symptom relief, it can be an important part of managing CFS - especially when temperatures rise.
Some Basics
OI is the development of a set of characteristic symptoms while standing or sitting upright. It has been associated with CFS in both adults and children.
The 1986 definition of myalgic encephalomyelitis (M.E.) by Melvin A. Ramsey, MD, includes "orthostatic tachycardia" as one of the accompanying features.
The first research study connecting OI and CFS was published in the Lancet in 1995, by Peter Rowe, MD, and associates at Johns Hopkins University, who identified a type of OI called neurally mediated hypotension (NMH) in CFS patients.
Since 1995, scientists have learned much more about the broader problem of OI in CFS. It is now thought that many CFS patients (up to 97% in some studies) have some form of OI and it seems to be a particular problem in young people with CFS.
Dr. Rowe presented a webinar about OI and its management on Sept. 1, 2010, as part of the Association's 2010 Webinar Series. The recording and his slides provide an excellent overview.
He also shared his clinic's written material about OI and medications, postural and dietary complements to comprehensive management of OI.
Types of OI
There are many types of OI. When you round up experts who study the autonomic nervous system (as we did at one of our research symposia in the year 2000), they have trouble agreeing on the names and definitions for the various types of OI. (Does that sound familiar?)
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Register Now for Post-Exertion Malaise Webinar, July 19
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On Thursday, July 19 at 2pm EST, the CFIDS Association of America will host a webinar on the information that ME/CFS patients ask for most - post-exertion relapse.
The webinar - "Top 10 Things You Need to Know about Post-Exertion Relapse" - will feature the Pacific Fatigue Lab's exercise physiologists Staci Stevens, Chris Snell, and Mark Van Ness.
This trio of fatigue analysts has worked for years, helped by CFIDS Association funding, to develop: 1) measures of post-exertion malaise (PEM), as a diagnostic test for chronic fatigue syndrome, and 2) measures of multiple body system functions as part of comprehensive disability evaluations.
Your questions are invited. You can help shape their presentation by submitting any questions you have when you register.
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Our Sponsors
![](http://portlandfibrocfs.com/wp-content/uploads/2012/04/WIP-Logo.jpg?width=300")
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The Thriving Fibromite
JULY 2012 |
Greetings!
Happy 4th of July! Hope your holiday was filled with fun, family and relaxation. PS... Think of one person with fibromyalgia or ME/CFS who has told you, "I wish there was some support for people like us!" and to him/her. |
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Practical Tips for Managing Your Energy with Tami Stackelhouse
Saturday, July 21st 1-4:30 PM
In July, our co-leader and Fibromyalgia Health Coach, Tami Stackelhouse, will provide practical, everyday tips to help us better manage our energy.
She will share with us the tools that she used to manage her life, energy and illness to help her overcome most of the symptoms of fibromyalgia. This includes incorporating periods of rest and activity as well as learning your body's own rhythm and how best to work with it.
Tami will teach us about scheduling, working effectively with our calendars and how to protect our healing time. This means learning to say "no" when we need to and also asking for help when the situation calls for it.
The best part is she will show us how to incorporate things we love to do back into our lives!
**Tami has generously offered a complimentary one-hour coaching call as a door prize for one of our lucky audience members. The drawing will immediately follow her talk and you MUST be present to win.
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Webinar: Q&A About Lyme Disease
 Date to be determined - email invitation will be sent
What do you know about Lyme Disease? Have you ever wondered if you might be infected? Do we have Lyme Disease here in Oregon?
Lyme disease is an infection caused by a spirochete (say "SPY-ROH-KEET") that humans can get from the bite of an infected deer tick. The spirochete's scientific name is Borrelia burgdorferi. Lyme disease is called "The Great Imitator" because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.
Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the east, midwest, and west coast. It seems to be spreading.
In August, Trish McCleary, survivor and now advocate of Chronic Lyme disease will speak to us about what Lyme Disease is, how it is contracted, diagnosed and treated.
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Two New Events in July
Walk Around the Lake
Saturday, July 14th 10:30 AM
Come join us for a walk around the lake at Murray Scholls Town Center.
The path is level and there are
benches along the way if you need to stop and rest. Then, after we're done, we can go somewhere for a bite to eat or cup of coffee or even frozen yogurt if we want.
Please feel free to bring spouses, partners or kids. The more the merrier! Here's the location: http://goo.gl/maps/K0kd. You can see the path around the lake on the map. There is a short bit that's along Murray, but the rest is right along the lake. Parking is right along the walking path. Social Get-Together  Thursday, July 26th 3:00 PM
Come join us for some fun social time!
We will meet in the Deli area of New Seasons in Cedar Hills. This should allow everyone to find the food and beverages to meet their dietary requirements as well as easy access and parking. (You may want to bring a cushion to sit on as most of the chair are wooden)
We look forward to enjoying your company in this relaxed environment where we can get to know each other in a way we don't have time for on meeting days.
Read more about these events or register here.
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A State-by-State Guide to Medical Marijuana
Marijuana is illegal in the U.S., but certain states allow it to be used as medical treatment. Here's a state-by-state guide to medical marijuana use.
Cont. Reading...
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June Recordings Available
Dr. Wendy Rogers on Adrenal Health and Sleep For various reasons that Dr. Rogers explained, our adrenal glands can become fatigued and not work the way they are supposed to. Our circadian rhythm can become confused causing our adrenals to pump out cortisol at the wrong times of the day. When cortisol is released during the nighttime, it will keep you from getting good quality sleep. This can a lot of times be paired with not enough cortisol in the mornings, which leaves you feeling exhausted and not ready to start your day. A simple saliva test can show your cortisol levels throughout the day. Dr. Rogers discussed what can be done to heal your adrenals and bring your cortisol levels back into balance. Dr. Wendy Rogers Video Recording Q&A About Medical Marijuana  Have you thought about using Medical Marijuana? Maybe you have questions about how to get your card or where to get marijuana once you have your card.
In 1972, the US Congress placed marijuana in Schedule I of the Controlled Substances Act because they considered it to have "no accepted medical use." Since then, 16 of 50 US states and DC have legalized the medical use of marijuana.
Proponents of medical marijuana argue that it can be a safe and effective treatment for the symptoms of cancer, AIDS, multiple sclerosis, pain, glaucoma, epilepsy, and other conditions. They cite dozens of peer-reviewed studies, prominent medical organizations, major government reports, and the use of marijuana as medicine throughout world history.
This was a practical discussion by patients who have been through the process.
Medical Marijuana Audio Recording Join our private web group here...
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 Join our Private Web Group
The Portland Area Fibromyalgia - ME/CFS Group provides a support system and social network for those dealing with fibromyalgia, chronic fatigue syndrome and other chronic illness and pain conditions. Our primary purpose is to encourage each other in thriving despite our illnesses.
By joining our private group, you'll have access to:
- Videos of our monthly group meetings featuring knowledgable speakers on various aspects of coping with and healing from chronic illness.
- Audio recordings of our monthly webinars featuring authors, doctors, naturopaths and other experts on fibromyalgia and ME/CFS from around the country.
- A compassionate online community where we share our stories and offer one another support.
- A library of articles on fibromyalgia and ME/CFS.
There are no membership dues and it is free to join. We hope that you will find exactly what you need in our group and look forward to meeting you!
Join the Portland Fibromyalgia-ME/CFS Group...
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Thanks for reading our March 2012 issue! We'd love your feedback on what you thought.
It would really help us if you would:
To thriving, not just surviving,
 
Tamara Staples Tami Stackelhouse
tamara@portlandfibrocfs.com tami@myrestoredhealth.com
(503) 476-9520 (971) 832-9322
Group Leader Co-Leader
Portland Fibromyalgia-ME/CFS Group |
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