Charlotte CFS/ME/FM Support Group Newsletter
for September 12, 2009
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.
by Dr. Charles Lapp, MD*, September 8, 2009
From the August issue
of Dr. Lapp’s free e-newsletter (www.drlapp.net/news.htm)
In June 2009 the World Health Organization declared that the spread of a novel
H1N1 Swine Flu had reached pandemic levels. At the time of this writing, the
swine flu has become widespread in the southern United States, especially the
Southeast. However, the illness prevalence, the number of doctor visits, and the
morbidity is still no worse than the usual seasonal influenza. It is expected
that the number of cases will increase as school resumes because H1N1 is rapidly
spread by coughing and sneezing, hand-to-hand, or hand-to-body contact.
Many patients have been alarmed by reports of the seriousness and infectivity of
this new flu, and have asked if vaccination is advisable. Our usual
recommendations on influenza vaccinations are that:
• That they have been known to trigger flares of CFS/ME/FM,
• That many PWCs to do not respond to vaccination anyway,
• And that viral infections are uncommon in most PWCs due to upregulation of the
immune system.
Therefore, we would recommend seasonal flu vaccination only if you have
tolerated these well in the past and if you are at high risk.
Because the current swine flu is so novel, a new vaccine needs to be produced.
This is not expected to be available until late October.
Unlike seasonal influenza, H1N1 mostly attacks younger age groups, particularly
under age 24. Vaccine availability will be limited, so it will be offered to
specific target groups first. These include:
• Pregnant women,
• People who live with or care for children younger than 6 months of age,
• Healthcare and emergency medical services personnel,
• Persons between the ages of 6 months and 24 years old,
• And people ages of 25 through 64 years of age who are at higher risk for novel
H1N1 because of chronic health disorders or compromised immune systems.
We do NOT consider the immune system in CFS/ME to be compromised to the point of
being “high risk” unless there is a history of frequent viral infections and/or
pneumonia.
Based on information available at this time, H1N1 immunization may not be
available to the majority of our patients until late Fall, perhaps well after
the swine flu peak. Therefore, we are recommending that our patients:
• Avoid crowds and sick people (especially coughers and sneezers!),
• Wash your hands frequently or use alcohol-based hand cleansers,
• Avoid touching your eyes, nose, or mouth with your bare hands.
The symptoms of novel H1N1 flu virus in people include fever, cough, sore
throat, and runny nose, body aches, headache, chills and fatigue,
possibly diarrhea and vomiting.
If you suspect that you have contracted swine flu:
• Immediately contact your primary care office or Hunter-Hopkins for advice and
possibly medication
• Avoid contact with others for at least 24 hours after the fever subsides
• Consider wearing a surgical face mask if others are around you
• Recognize these warnings signs and seek medical assistance immediately for
difficulty breathing or shortness of breath, pain or pressure in the chest or
abdomen, sudden dizziness, increased confusion, severe or persistent vomiting,
and flu-like symptoms that improve but then return with fever and worse cough.
In lieu of swine flu vaccination two antiviral medications can be taken to
reduce the symptoms and severity of the illness.
These must be started within 48 hours of illness onset, and are not recommended
for prevention of the flu. The adult doses of these medications are:
• Tamiflu / oseltamivir
(75 mg tablets taken twice daily for 5 days) or
• Relenza / zanamivir
(two inhalations twice daily).
For more information go to the Center for Disease Control website at
www.cdc.gov/h1n1flu/
* Dr. Charles Lapp, MD
Hunter Hopkins Medical Center
Charlotte, North Carolina
drlapp@drlapp.net
10344 Park
Road, Suite 300 - until October, then:
721 Carmel Executive Park Drive, Suite 320
Charlotte, North Carolina 28226
____
Note: This information has not
been evaluated by the FDA. It is general and should not replace the attention
and advice of your personal physician. Nor is it meant to prevent, diagnose,
treat or cure any condition, illness, or disease. It is very important that you
make no change in your healthcare plan or health support regimen without
researching and discussing it in collaboration with your professional healthcare
team.
Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue. Patients who qualify for the study will be asked to complete three questionnaires over a six month period. Participating in the study will not alter the treatment that your physician gives you.
The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians. If you may be interested in participating in this study, please contact the study coordinator, Kathleen O’Connor at (801) 587-4741. For more information email kathleen.oconnor@hci.utah.edu or visit our website at https://hci-as2.hci.utah.edu/CFSurvey/app.
Advocates Respond to CDC’s Research Plan
By Kim McCleary, President & CEO, The CFIDS Association of America
For nearly two years,
the CFIDS Association of America has been working to effect a more robust
research effort at CDC. In spite of these diligent ongoing efforts, the past two
years of dialogue and public testimony have produced a 5-year draft plan from
CDC that is substantially the same as what CDC has been reporting since 2006.
Status quo. Groundhog day. Déjà vu. All over again.
(to
read on:)
http://www.cfids.org/cfidslink/2009/070108.asp
Post-Swine Flu
Chronic Fatigue Syndrome
Monday September 7, 2009
NEWSBRIEF: The IACFS/ME (International Association for Chronic Fatigue Syndrome/ME) reports that the organization has learned of a documented case of post-H1N1 chronic fatigue syndrome.
"The patient is a 15-year-old male New Zealander who contracted H1N1 on a trip to Mexico and never recovered," says Dr. Ken Friedman, IACFS/ME board member.
Many researchers believe in a genetic predisposition to chronic fatigue syndrome, so those with the condition may want to urge their family members to be vaccinated against the swine flu.
Because the swine flu is hitting younger people harder than most flu strains, it's raising the question of whether the pandemic will create a lot more cases of juvenile chronic fatigue syndrome. Here's one noted blogger's take on the situation: (to read on: http://chronicfatigue.about.com/b/2009/09/07/post-swine-flu-chronic-fatigue-syndrome.htm ).
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ME-CFSCommunity.com |
Note from Nancy: This is a very worthy organization. |
Carolinas Medical Center in Charlotte, NC
Offers" Prepare
for Surgery, Heal Faster."
Come take my Prepare for Surgery Training in Charlotte, Sept. 18-20.
Click on the link below to read the article in Monday's Charlotte Observer:
http://www.charlotteobserver.com/karengarloch/story/919816.html
Peggy Huddleston
Author, Prepare for Surgery, Heal Faster:
A Guide of Mine-Body Techniques
www.HealFaster.com
800-726-4173
peggy@healfaster.com
Donations to ME/CFS Research Organizations
I've again begun selling certain items on my Etsy shop at www.grannysgewelry.etsy.com
to raise money for ME/CFS Research. John Herd recently implied if we're going to raise money, we can't depend on the government. We have to do it. So all of you out there who can make crafts of any kind, would you consider helping in some way. I know that everyone cannot. But those of you who can, please consider this.
You can also donate directly to various research organizations - its quite simple if you want to make a $5 or $10 or more donation to either the IACFSME Organization,the Whittemore Peterson Institute for Neuro-Immune Disease, or the CFIDS Assocation.
Making Donations to the WP Institute for NID: http://www.wpinstitute.org/
You'll see a column to the left where you can click on "Donations."
Making Donations to the IACFS/ME Organization:
http://www.iacfsme.org , Look at the top and you'll see a link to the Donations page to click on.
To the CFIDS Association, just go to www.cfids.org .
From the Recent CFIDSLink E-Newsletter:
CFS Advisory Committee to meet in October
The federal CFS Advisory Committee will meet next on October 28-29, 2009 in Washington, D.C. The meeting is open to the public and time has been reserved on the agenda to hear testimony from members of the public.
Posted below is the September 4, 2009 meeting notice from the Federal Register, which can be viewed at http://frwebgate4.access.gpo.gov/cgi-bin/PDFgate.cgi?WAISdocID=068903155476+2+2+0&WAISaction=retrieve.
September is Pain Awareness Month
Subscribe to their e-newsletter to keep up with pain issues.
The IACFS/ME August E-Newsletter
I thought you'd be interested in what they have to say about Swine Flu and CFS which I included above. You may be interested in the entire newsletter as well.
http://iacfsme.org/NewsletterAugust09/tabid/388/Default.aspx#Swine_Flu_and_CFS
The Latest from the Pain Connection with Karen Richards
http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html
The next meeting of the CFS/FM Support Group of Gaston County will be Thursday, September 17th from 1 - 2:30 p.m.
We meet at Bethlehem Baptist Church on S. New Hope Rd. ,Gastonia near Tee Time Golf.
Dr. George Raad will be our speaker. Dr. Raad treats Fibro patients in private practice in Charlotte using The Metabolic Treatment of Fibro Protocol. He is also with Metrolina Research. This topic should be of interest to many of you who have thyroid conditions. Dr. Raad will address the connection between thyroid abnormalities and chronic illness.
For further information, contact Derice Falls, 704/867-7829, or Tammi Rhoney, 704/864-6565.
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If you are interested. . . . . .
A new 6-week class "Handling Chronic Illness" will be starting on September 21 at the Senior Center in Dallas. The class will meet from 10 a.m. - 12 noon every Monday. Call to reserve a spot before the class fills up (It is limited to 16 participants).
For more information, call Cheryl Miller or Doris Graham at the Senior Center. You can reach them at 704-922-2170
Victoria Bonner, Support Group Facilitator
From About.com - The Forum and Information Site "About" ME/CFS and Fibromyalgia, Adrienne Dellwo
15 Terms Everyone with Fibromyalgia Should Know: http://chronicfatigue.about.com/b/2009/08/29/15-terms-everyone-with-fibromyalgia-should-know.htm
15 Terms Everyone with Chronic Fatigue Syndrome (ME) Should Know: http://chronicfatigue.about.com/b/2009/08/31/15-terms-everyone-with-chronic-fatigue-syndrome-should-know.htm
Fibromyalgia HealthWatch , September 9th, 2009
http://www.prohealth.com/em/EM090909F/index.cfm
Dr. Oz will see you now! In his first O column, he analyzes the different treatments for Fibromyalgia.
Defining Fibromyalgia: Though classified as a disorder of the musculoskeletal system, the condition is now seen as a central nervous system problem. Symptoms include increased sensitivity to pain, achy and stiff joints, fatigue, and specific tender points on the back, chest, arms, and legs. Migraines, sleep disorders, and irritable bowel syndrome are also common complaints. Up to 3 percent of the population may suffer from Fibromyalgia, but with no clear cause, the condition is difficult to diagnose.
To read on: http://www.oprah.com/article/omagazine/200909-omag-dr-oz-fibromyalgia
Subscribe to the PainConnection Newsletters
http://www.healthcentral.com/utils/news/chronic-pain/subscriptions.html?ic=4036
Blood Biomarkers for CFS: A Light at the End of the Tunnel
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By Suzanne D. Vernon, PhD, Scientific Director of the CFIDS Association of America
A biomarker is an indicator of a biologic state used to objectively measure processes in the body that occur during health, disease or in response to treatment. Researchers studying CFS have been looking for blood biomarkers so that diagnosis of CFS would not have to rely on self-reported symptoms like fatigue, pain and unrefreshing sleep that are difficult to measure by objective means. Finding a consistent and reproducible blood biomarker that could be turned into a clinical test would be a huge leap forward for care and credibility. (To read more:)http://www.cfids.org/cfidslink/2009/080503.asp
E-MAIL SUPPORT GROUPS
Karen Clinton
20 online e-mail support groups
for those with CFS and/or FM
ckarenfriend@aol.com
Pam
Horne
Fibro-Research Support
pamhorne@carolina.rr.com
http://health.groups.yahoo.com/group/fibro-research
Sign up to Be Reminded to Click on the Breast Cancer Site plus others such as the Animal Rescue and Hunger sites. If you are a new registrant, the sponsors give even more towards free mammograms.
http://www.theanimalrescuesite.com/clickToGive/subscribe.faces?siteId=2&subscribeTo=reminder
Spiritual Corner
God is our refuge and strength,
an ever-present help in trouble.(Psalm 46:1, NIV)
Nancy Henson
Editor, Charlotte Area ME/CFS and Fibromyalgia Support Group E-Newsletter
