Charlotte CFS/ME/FM Support Group Newsletter
for April 3, 2009
Sick and tired finds company
By
Karen Garloch
kgarloch@charlotteobserver.com
Posted: Monday, Mar. 30, 2009
Dr. Charles Lapp leads a series of free classes at the Sharon Presbyterian Church in Charlotte for people with chronic fatigue syndrome.
ROBERT LAHSER - rlahser@charlotteobserver.com
In the mid-1980's, chronic fatigue syndrome was first identified as a cluster of symptoms in clusters of patients in a few spots in the United States. Dr. Charles Lapp, then a family physician in Raleigh, identified one such outbreak among all the members of the N. C. Symphony Orchestra. Seven remained ill with chronic fatigue.
· “Patients started coming to me with persistent flu-like symptoms,” said Lapp, now medical director of Hunter-Hopkins Center in Charlotte. “They would work one day and have to sleep for two. Perfectly well-adjusted people became disabled almost overnight.”
By the time Lapp notified the federal Centers for Disease Control and Prevention about his findings, the agency had heard similar stories from Lake Tahoe and Rochester, N. Y.
At first, because the illness seemed to strike middle-income, well-educated people, it got tagged with the name “Yuppie Flu.” Patients hated that because they thought it made light of their conditions. In time, researchers confirmed the syndrome was real, and it was given more respectful names – chronic fatigue syndrome, chronic fatigue and immune dysfunction syndrome, or myalgic encephalopathy.
Experts initially believed the syndrome was caused by a virus or retrovirus. But that proved wrong, and later research looked at immune system abnormalities. The most recent focus is on the central nervous system and the body's metabolic system, Lapp said.
Researchers in Spain and England have shown that certain genes in patients with CFS and fibromyalgia are turned off and on differently than those in healthy people, Lapp said. A blood test was recently patented but is not available commercially, he said.
The cause is unknown, and there's no cure.
About 70 percent of people who have chronic fatigue syndrome also have fibromyalgia, and vice versa. It's often difficult to distinguish between the two. Although fibromyalgia is not a new syndrome, it was officially defined by the American College of Rheumatology in 1990 as chronic widespread pain (at least three months duration) associated with at least 11 of 18 pressure points on the body. Like CFS, it can be extremely debilitating and interfere with basic daily activities.
Insurance coverage for chronic fatigue syndrome and fibromyalgia is sporadic, Lapp said. “In our practice, 30 percent of patients get full reimbursement, 30 percent get partial, and the rest get minimal.”
Karen Garloch
Most of the 15 people gathered for a support group this month did not look sick.
But when they began to talk about their common conditions, the list of symptoms went on and on.
Pain, fatigue, depression. Insomnia, nausea, headaches. Muscle spasms, ringing in the ears and sensitivity to heat, cold or light.
Dr. Charles Lapp has heard all of this before. He's medical director of the Hunter-Hopkins Center, a Charlotte clinic that focuses on patients with chronic fatigue syndrome and fibromyalgia. Many group members are his patients.
But instead of letting the support group descend into gloom and despair, Lapp tries to lead with hope and help.
He's currently offering a new series of free classes that help patients take back some control over their lives and better cope with the main symptoms: pain, fatigue and insomnia.
“They're all related to one another,” Lapp said. “If one gets worse, the others get worse. Conversely, if you treat one and it gets better, the others get better, too.”
Some 9 million U.S. adults suffer from chronic fatigue syndrome, but many go undiagnosed, according to the Centers for Disease Control and Prevention. Fibromyalgia affects as many as 6 million, says the CDC.
It's often difficult to distinguish between the two medical conditions. Some experts believe they are separate disorders. Others feel they are different facets of the same disorder. Pain is the primary symptom of fibromyalgia; fatigue is the main symptom in chronic fatigue syndrome.
The course Lapp is teaching was developed by Bruce Campbell, a California educator and psychologist who based the curriculum on his own experience in overcoming these often-misunderstood conditions.
Campbell's personal prescription involved “enforced rest” – setting limits and taking short rest periods every day – in addition to regular exercise, emotional support and medicine for symptom control.
“He was able to totally recover in five years,” Lapp said. “He can easily hike 10 to 15 miles, which is the envy of many patients with chronic fatigue syndrome and fibromyalgia.”
Clutter is common
At the recent support group meeting, Lapp asked the members – mostly women – to identify small, specific tasks they'd like to accomplish. Some mentioned the need to go to bed earlier or exercise regularly. Several wanted to organize their homes and get rid of clutter.
The clutter problem is almost universal with these patients, Lapp said. “They get so distracted that they start multiple projects, and the house ends up … a mess. It's overwhelming.”
As always, the group members offer ideas and support.
“Instead of trying to take on the whole room, maybe you could take on a table,” suggested Maggie Reed, 47, of Fort Mill.
“Or a corner of the table,” said Leslie Vann, 56, also from Fort Mill.
When Lapp asked for ideas on how to prevent fatigue and pain, suggestions included hot showers, massage, deep breathing and petting the dog.
Reed, who has suffered from chronic fatigue syndrome and fibromyalgia since 2006, said she visualizes a backyard pool and the landscaping she'd like to have around it to get her mind off pain or stress. “I go to what I call my ‘happy place,'” she said.
Kebbie Cannon, 45, of Waxhaw, who has had chronic fatigue syndrome for 22 years, said she tries not to get too cold because that causes her muscles to tense up in pain.
To the contrary, Reed said she works to avoid getting too hot. “I start to feel like I'm suffocating.” Several in the room said they also have trouble with heat.
Reed almost cried for joy when she heard that. Until she made these friends, she felt lonely and misunderstood.
Reed was a data analyst at Transamerica in Charlotte before going on medical disability last summer. “It just got harder and harder for me to continue working,” she said.
Having worked since she was 17, it's hard to be at home, “barely able to do a load of wash” or take care of her 13-year-old daughter. Because she doesn't look sick, she says other people view her skeptically. “I look fine, and I'm a large woman. You're automatically perceived as being fat and lazy. There's tremendous guilt and isolation,” Reed said.
The support group helps. “You can get together and make friends and say ‘I can't do it today,' and they understand,” Reed said. “We've had to create our own community because we're the only ones who understand what we're going through.”
Karen Garloch: 704-358-5078
From Co-Cure:
Subject: Annette Whittemore and Judy Mikovits (WPI) on Nevada TV
A person on the CFIDS Assoc. Facebook page posted this link-
Pretty neat video, Judy Mikovits talks about some pretty neat research that's
pending publication. Following the link to the video there is a link to an
unoffical written transcript.
(If the video doesn't work you can open the mp3 file and have audio - right
click and open).
http://www.nevadanewsmakers.com/video/nnmstreamm.asp?showID=816
Co-cure Article with the Unofficial Transcript:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0903e&L=co-cure&T=0&F=&S=&P=2101
Sender:
ME/CFS and Fibromyalgia Information Exchange Forum
From:
Tate Mitchell <[log
in to unmask]>
Subject:
Annette Whittemore and Judy Mikovits(WPI) on
Nevada TV
A person on the CFIDS Assoc. Facebook page posted this link-
Pretty neat video, Judy Mikovits talks about some pretty neat research
that's pending publication.
(If the video doesn't work you can open the mp3 file and have audio - right
click and open).
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0903e&L=co-cure&T=0&F=&S=&P=958
This is from the latest issue of the CFIDSLink E-Newsletter published by the CFIDS Association of America. Remember that their website is www.cfids.org .
Six
Non-Profits Join Forces to Help Millions of Patients
Suffering from Chronic
Medical Conditions
In an effort to help millions of Americans suffering from multiple chronic medical conditions, six independent nonprofit organizations have come together to form the Overlapping Conditions Alliance. The new Alliance will promote research into the underlying connection(s) between coexisting conditions. As part of this effort, the Alliance has launched an informational web site - www.OverlappingConditions.org.
Millions of Americans suffer from one or more of these chronic disorders: chronic fatigue syndrome, endometriosis, interstitial cystitis (painful bladder syndrome), irritable bowel syndrome (IBS), temporomandibular joint and muscle disorders (TMJ) and vulvodynia. Health care providers receive limited training on these conditions, leading to frequent misdiagnosis and inappropriate treatment for millions of patients.
Studies indicate these conditions often "overlap." "The label that doctors use to make a diagnosis for these conditions often has less to do with patient's particular symptoms than it does their familiarity with one or more of these conditions. We can help by pointing out where the similarities and differences lie," said Kim McCleary, president & CEO of the CFIDS Association of America. Much more research is needed to understand the connection(s) and develop more effective treatments. All of these conditions cause enormous physical and emotional distress for sufferers and their families. In addition, they cost the US billions of dollars each year in medical costs and lost productivity.
The mission of the Overlapping Conditions Alliance is to change this situation by advancing the scientific, medical, and policy needs of individuals afflicted with multiple chronic conditions. The Alliance is composed of six independent nonprofit patient advocacy organizations: the Chronic Fatigue and Immune Dysfunction Syndrome Association of America (CFIDS), Endometriosis Association, Interstitial Cystitis Association, International Foundation for Functional Gastrointestinal Disorders, National Vulvodynia Association, and The TMJ Association.
Re: Fibromyalgia
Note: For some unknown reason, Fibromyalgia was not included in the list of major overlapping disorders but is listed under CFS: http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp
Latest ME/CFS/Fibro Info from ProHealth
http://www.prohealth.com/me-cfs/index.cfm
From the New President of the IACFSME:
http://www.iacfsme.org/OrganizationInformation/tabid/124/Default.aspx
Reno Wrap-Up: A Report on the 2009 IACFS/ME Conference, By Kim McCleary and Suzanne Vernon, PhD, The CFIDS Association of America
http://www.cfids.org/cfidslink/2009/040102.asp?view=print
9th International Research and Clinical Conference for CFS/ME, Hosted by the International Association for CFS/ME, March 12-15, 2009, Reno, Nevada, Coverage by the CFIDS Association of America:
Conference Overview Article by Kim McCleary & Scientific Director
Daily On-Site Conference Reports Posted to Facebook by CFIDS Association President & CEO Kim McCleary
If the following links do not work, skip down to the link below "Day Four...." to view more about the conference.
Day Two (Research & Clinical Conference)
Day Three (Research & Clinical Conference)
Day Four (Research & Clinical Conference)
http://www.cfids.org/cfidslink/2009/040103.asp
Quick-Fix Mentality" Doesn't Work With Fibromyalgia & Chronic Fatigue Syndrome
Do you have a "quick-fix" mentality? Are you seeking that one drug, that one supplement, that one elusive anything that will be the perfect treatment?
Sorry to fill up your in baskets so much lately but there's been a lot of news of late.
Nancy Henson
Charlotte Area ME/CFS and Fibromyalgia Support Group