Charlotte CFS/ME/FM Support Group Newsletter
for March 15, 2010
Hi Everyone,
Our meeting this weekThursday, March 18, 7:00PM - 8:30PM (social time 8:30-9:00PM) is with Dr. Myra Preston, Diplomat in Neurotherapy and Cognitive Behavioral Therapy. Dr. Preston will present the latest in neurofeedback which has been most helpful to many CFS/FM patients as well as with other disorders.
The meeting is at Sharon Presbyterian Church, 0.8 miles south of South Park Mall; Sharon Presbyterian Church is located 0.8 miles south of SouthPark Mall on Sharon Road. Use the entrance closest to the mall. We meet in the Charles Little Activity Building (or CLAB), which is the brick building at the rear of the parking lot. As you come into the building, go into the first door on your right. This is the Parlor of that building where we have our meetings.
PLEASE NOTE:
My husband and I hope to travel up north to visit family for Easter and will be gone about a week and a half and return around the 12th. I may not get the opportunity to send a reminder very early before the April 15th meeting. So be sure to write yourself a note, update your calendars, or ask a friend to call and remind you.
Upcoming Meetings:
- April 15 -- Kelly Gibson, CLL - L.A.U.G.H. Laugh And U Generate Happiness; 704-724-3899 - Kelly will teach us how to use laughter to cope with chronic illness.
- May 20 -- TBD
- June 17 -- Dr. Nancy Waring, PhD., a therapist who has CFS & Fibro will speak to us on coping with chronic illness
As always, I want to remind everyone who attends to be sure that you don't use perfumes or perfumed anything before coming to the meeting. It can be very toxic for some people. For those who may not be aware... MCS (Multiple Chemical Sensitivity) is a very serious illness that can be anywhere from mild to severe for some folks. Often this disorder accompanies CFS - I'm not sure about those with "just" Fibro. Dr. Lapp can answer that question.
From last month's newsletter and reminder - is the issue of sensitivity to heat and cold. This is very common with CFS and probably Fibro as well. At our meetings, we have about 4 heat/ACs and we can easily adjust the temperature. The problem comes when the room is either very cold or very warm when the first person arrives to set up for the meeting. They turn on the heat or AC. Later on it can get too warm or too cold so that its necessary to adjust the thermostat.
We can discuss this briefly at future meetings, but we could ensure that one side of the room is a bit cooler for those who get overheated easily and those who don't can sit on the other side. But we'll have to address the issue at the meeting to work this out. But any time you are very uncomfortable - either too warm - or too cold, please interrupt and let us know and we'll quickly adjust the thermostats. Kebbie or any of us on the Board will ask you at some point after the meeting starts whether we need to adjust the temperature. But do ask if you need to.
And as always, if you are having an achy day and need to get up and walk around, you know that you are free to do that. We have refreshments you can enjoy or browse the information table. Or just walk around. If you need to cool off quickly, you can step outside for a minute or two.
Important from a Past Newsletter but Bears Repeating:
This information came to me from an Internet friend who is in Facebook re: the W-P Institute and a general CFS group. She offers this info to us:
Andrea Whittemore - Goad is putting a CFS book together from patients around the world. If you are well enough or interested, please email her your story. I want to emphasize - anyone can participate! Our stories are powerful and she wants them told. She will add her story to the other stories out there. She would also like a .jpg file of yourself if its possible. She's also not decided on a name for the book so would love any suggestions.
Your story should be
concise
- about 2 paragraphs or about 500 words. You can email your submission to:
andrea.whittemore@wpinstitute.org
She
hates to put a time limit on this endeavor but would like to get the book done
by September. Right now there's no definite date by which she needs your input
submitted but if you really plan to do this, do it very soon. My friend Pris
will be monitoring this activity and report back to me if there's more info -
particularly a submission deadline.
Thanks and I hope our Charlotte group and others will be well represented in her book. To have this done by September I'm wondering if it will be a softcover book or pamphlet - more like a magazine? But Pris will update me anytime there's more info. With May 12th just around the corner, I think this is a wonderful project.
Dr. Klimas Article in Ms. Magazine
http://www.msmagazine.com/summer2006/wakeupcall.asp
Let me begin by
listing my reasons for writing this.
To share my experiences with
everyone who's interested but may never intend to see Dr. Peterson.To give some
insight to anyone who might be considering making an appointment but may have
concerns regarding what it may entailTo help someone prepare for a scheduled
appointment to see Dr. Peterson. To read more, go to:
http://forums.aboutmecfs.org/content.php?11-Corrines-Visit-to-Dr-Peterson-Part-I
The Art of Pacing - This was in the March Issue of CFIDSLink. I'm including it here for those who missed it.
http://www.cfids.org/cfidslink/2010/030302.asp\
Pain Treatment as a Human Right by Adrienne Dellwo; Saturday February 27, 2010; About.com
It's amazing how hard some things hit you. I saw the title of a BMC Medicine article titled "Access to pain treatment as a human right," and I started to cry. Actually reading the abstract brought up a complex mixture of emotions that included anger, sorrow and frustration.
The article is from the organization Human Rights Watch, which, according to its own mission statement "is dedicated to protecting the human rights of people around the world. . . . We challenge governments and those who hold power to end abusive practices and respect international human rights law."
In a nutshell, it talks about the nearly 50-year-old human rights law governments around the world adopted in order to work toward universal access to narcotic pain treatments. Today, Human Rights Watch finds governments have fallen down on the job.
The abstract says:
"Significant barriers to effective pain treatment include: the failure of many governments to put in place functioning drug supply systems; the failure to enact policies on pain treatment and palliative care; poor training of healthcare workers; the existence of unnecessarily restrictive drug control regulations and practices; fear among healthcare workers of legal sanctions for legitimate medical practice; and the inflated cost of pain treatment. These barriers can be understood not only as a failure to provide essential medicines and relieve suffering but also as human rights abuses."
In the U.S., we do have a functioning drug supply system, but in my opinion we're failing on the rest of it.
Leaving millions of us to suffer with pain from fibromyalgia, chronic fatigue syndrome and a host of other undertreated, painful conditions is a violation of the doctor's oath to do no harm and a violation of international human rights law. Wouldn't it be nice if we started to see some enforcement?
Someone commented here once that we consider it compassionate to put animals to sleep when they're in pain, but we'll let human beings suffer indefinitely. I hope Human Rights Watch will push for the humane treatment of people with chronic pain, and I hope at least some governments will do something about it.
I'm fortunate -- I have doctors who prescribe pain medications for my pain (novel concept!), even though I'm in a state with especially restrictive regulations. However, I'm always afraid my luck will run out with the next refill request, and it scares the heck out of me. When I think of all the people who are in pain like me and can't even get the occasional Vicodin, I can't help but cry.
As a pain patient and advocate, I obviously have my biases. I'm happy to say that many of the concerns I've expressed are highlighted in a Time Magazine article: Are Doctors Too Reluctant to Prescribe Opioids?
I'm planning to forward the Human Rights Watch article to my elected representatives. If you'd like to do the same, here it is:
The right to pain treatment -- that's one I'll fight for.
The Long Goodbye
CFS Facts Now on Facebook
Date:
Tue, 9 Mar 2010 13:35:05 -0500
From: "Karen M Campbell <SacWriterEditor@aol.com>
via. Co-Cure Moderator"
<ray@co-cure.org>
Subject: NOTICE: New at
Facebook: CFS Facts
Facebook | CFS Facts
http://www.facebook.com/pages/CFS-Facts/491983490593
Karen M. Campbell
Sacramento, Calif.
www.CFSFacts.org -- dispelling the
myths and providing the facts
NeuroEndocrineImmune (NEI) Center™
Resolution awaits passage in New Jersey State Senate
This news comes from the P.A.N.D.O.R.A advocacy group headed up by Marly Silverman.
Nancy Henson, Editor
Kebbie Cannon, Support Group Leader
Dr. Charles Lapp, Leslie Vann, Maggie Reed, Kebbie and Myself - Executive Bord
Our Website: www.CharlotteCFS.org