Charlotte CFS/ME/FM Support Group Newsletter

for December 17, 2012

 

Hi Everyone,

 Our December meeting, this coming Thursday, Dec 20th at 7PM, is our annual Christmas party except that Dr. Lapp will not be able to be with us.  Sadly, his schedule is fractured from his travels around the world so he's so sorry that he can't be with us.

 We will however forge ahead and will have some canned music for a sing-along.  And we'll also use this time to get to know each other better.  If you haven't been to one of our Christmas meetings in a long time, please come to this one as we share all kinds of goodies. Typically we bring items from real food to munchies or beverages of any kind. This is the perfect time to really get to know people in this group.  Email me if you have any questions.

 I want to thank all of you who took the time and "energy" to write me a note during this sad and difficult time.

 ******************************************************************************************************

As always, our meetings start at 7:00 PM and wind up around 8:30-9:00 PM at Sharon Presbyterian Church, located 0.8 miles south of SouthPark Mall on Sharon Road. Use the entrance closest to the mall if you can. There is a second entrance but you'll have to weave around in order to find the parking lot to the left of the sanctuary building (left as you would be facing the building).

 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 you should see a sign for the meeting, then after you get inside - go into the first door on your right - the Parlor - where our group meets.

 Remember no perfumes so as not to make those with MCS ill and no smoking anywhere on the church grounds.

 And if you need further directions, you can call me at 704-563-0657 or email any of the member of our board as listed at the bottom of this newsletter.

 **************************************************************************************************

 January 17, 2013 Meeting - Our Charlotte ME/CFS/FM Support Group Board is using this evening to have a planning meeting as we discuss what speakers to invite and topics for discussion.

 NOTE If you have been attending our meetings and think you could help, please don't hesitate to attend this meeting. We all have talents of one kind or another. Perhaps you can help in a way someone else couldn't. One asset we always appreciate is knowing a person in the medical field who would have something important to share with us about treatment for the symptoms of ME/CFS and/or Fibromyalgia.

 For example, we recently had Dr. Lloyd Bridges, a family primary care physician, of Pinelake which is part of Novant-Presbyterian.  There may be other doctors who would be willing to come and speak on their particular methods of treating the symptoms of ME/CFS and/or Fibromyalgia

 February Meeting - Open Discussion

 March Meeting      - Myra Preston - Go to http://www.siberimaging.com/about.html to learn more about Myra.

 ******************************************************************************************

 ***  VERY IMPORTANT - EMAIL BY DEC 20th ***

 ******************************************************************************************

 Email address: AAC@fda.hhs.gov

 Subject line: Treatment for Chronic Fatigue Syndrome - Ampligen

 

To The Advisory Committee Reviewing Ampligen:

 

My name is ________________________.

I have had ME/CFS for more than ___ years.

Before I became ill, I had a life that was ___________________________.

My life since coming down with ME/CFS has been _____________________________.

We need a treatment. ME/CFS affects every moment of my life in that ________________________. The symptoms I deal with include _____________________.

Thank you,

Full Name

Address Here

 

Here are links to some articles of interest.

http://researchnews.osu.edu/archive/chronfatigue.htm

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0049518?imageURI=info:doi/10.1371/journal.pone.0049518.g004

 

Practical Information and Community for those afflicted with ME/CFS and Fibromyalgia by Dan Moricoli

http://www.me-cfscommunity.com

 

 From Co-Cure.org

Date: Fri, 9 Nov 2012 05:41:55 -0700
From: ME Advocacy <info@ME-ADVOCACY.COM>
Subject: The encephalomyelitis in ME

http://me-advocacy.com/The_encephalomyelitis_in_ME.html

The encephalomyelitis in ME

“As encephalomyelitis describes an unproven pathological process - namely inflammation in the brain and spinal cord - many doctors have become reluctant to use this term. Some, including the author, have suggested that encephalopathy is a more acceptable way of describing the various neurological abnormalities and symptoms.“ - Charles Shepherd,
2006.

http://www.cfids-cab.org/rc/Shepherd.pdf

ME patients deal with a great many misconceptions about their disease from not only family members and friends, but also medics. The name itself, specifically encephalomyelitis, is arguably one of the most ontentious issues. Amongst those medics, researchers and scientists who deal directly with the disease or chronic fatigue syndrome, it has long been debated whether the name is appropriate to the actual disease. The answer is an unequivocal yes.

To be an encephalomyelitis, ME patients would have inflammation of the brain and spinal cord. Advances in scientific measurements and understanding of causes of encephalomyelitis have revealed that specifically in the brain this is neuroinflammation, which is indicated by the presence of activated microglia (immune cells in the brain).

“Activated microglia secrete a variety of inflammatory mediators including cytokines (TNF, and interleukins IL-1β and IL-6) and chemokines (macrophage inflammatory protein MIP-1α, monocyte chemoattractant protein MCP-1 and interferon (IFN) inducible protein
IP-10) that promote the inflammatory state.”

http://www.molecularneurodegeneration.com/content/4/1/47


Microglia are activated by the adaptive immune response due to various triggers, producing various proinflammatory cytokines and immune mediators. This response can then become chronic due to sustained
activation and as a result lead to neuronal dysfunction and eventually neurodegeneration.

The presence of activated microglia in the brain and spinal cord is thus a hallmark of all neuroimmune diseases, such as Alzheimer's, Parkinson's, ALS, MS, and so on.

In ME, autopsies have already demonstrated that dorsal root ganglionitis, which is the result of inflammatory processes targeting the sensory ganglia, is present in patients. Dorsal root ganglionitis is an alternative name for sensory ganglionitis, which may occur as a result on inflammation caused by HIV.

In view of these findings and sciences understanding of the mechanism underlying encephalomyelitis and the availability of tools such as PET scanners to determine the presence of a biological process that is absolutely required for a diagnosis of ME, we must ask why there is a complete absence of any such research within the field? Why ignore such a simple diagnostic method that defies crackpot beliefs and would surely open a more fruitful area of investigation for treatments then the study of downstream symptoms?

ME Advocacy
9 November 2012

 

 How Normal Fatigue Differs From Chronic Fatigue Syndrome How Tired Is Too Tired?  (Co-Cure)

Date: Fri, 14 Dec 2012 13:59:35 -0600
From: kelly <kellylatta66@GMAIL.COM>

Note: The article below is the corrected version of an earlier one. After
an activist alerted Dr. Jason to errors in the story, he contacted the
reporter and together they worked to correct the mistakes. The article
erroneously stated among other things that “Sleepiness can turn into
chronic fatigue syndrome.” Dr. Jason did not say that. The error was
inadvertently introduced during the editing phase.

Please note that from time to time in any article on any subject there can
be errors introduced by an editor who is working on deadline to strengthen,
clarify and potentially shorten an article. Errors are not intentional and
in most cases publications are more than happy to work with a source to fix
such errors. ( This is not the same thing as a source being correctly
quoted, but the reader disagrees with the statements made by the source.)

*
*Prevention News*
How Normal Fatigue Differs From Chronic Fatigue Syndrome How Tired Is Too
Tired?

What your fatigue could really mean

by Markham Heid
http://www.prevention.com/health/sleep-energy/how-normal-fatigue-differs-chronic-fatigue-syndrome#ixzz2F3cqLWQG

If you're like a lot of people, the last time you hopped out of bed with a
spring in your step was Christmas morning when you were five—and you were
probably tired then, too. Whether it's your nutty schedule, a cat who won't
let you sleep for more than five consecutive minutes, or plain old stress,
it's usually pretty easy to see why you're dragging. Except when it's not:
New research warns that feeling fatigued too often can be a sign of some
eye-opening problems.

Chronic fatigue syndrome (CFS) is a mysterious condition characterized by
ongoing feelings of sleepiness that aren’t alleviated with more rest, and
don’t seem linked to other health problems. And while researchers have yet
to nail down the cause of CFS, a new study, published in the *Journal of
Psychotherapy and Psychosomatics*, suggests that chronic inflammation might
actually be behind the problem.

So how can you figure out whether your tiredness is CFS? Keep tabs on how
often you suffer from daytime lulls, says CFS expert Leonard Jason, PhD,
director of the Center for Community Research at DePaul University. Fatigue
for short periods of time is normal, whereas fatigue that lasts for days or
weeks is not.

“If you take a vacation from work, or spend a weekend catching up on sleep,
you should feel better,” he says. If that doesn’t help, then the issue may
be more serious, he says.

  

Flu Vaccines

Well its that time of the year again. Most oldtimers with this disorder already know the answer but for anyone who doesn't, here's what Dr. Lapp has to say on the subject of whether to take a flu vaccine or not:

*******************************************************************************************

Note: In general, relapses in ME and CFS may be tied not to the chemicals in the vaccine, but related to whether the virus is attenuated (live). MCS, if co-occurring, may also be a variable.

Influenza Vaccination - Should I get a flu vaccine?
Dr. Charles Lapp, Hunter-Hopkins Clinc

Due to reports of severe relapses following immunization, flu vaccinations are generally NOT recommended to persons with CFS or FM unless (1) you have taken flu vaccinations in the past and tolerated them well or (2) you have a serious chronic illness (such as emphysema, diabetes, or heart disease) in addition to CFS/ME/ FM. Not only do some patients relapse after flu vaccination, but many do not sero-convert (develop antibodies) to the vaccination. Thus you may suffer the discomfort of a “shot” plus the misery of a relapse, and not even develop immunity.

These are the current recommendations from the Hunter-Hopkins Center:


If you have tolerated it in the past, you may take a flu vaccination this year if you wish. Recognize, however, that you may not develop protective antibodies.

If you are elderly, infirm, or have a serious chronic illness for which vaccination is recommended, weigh the risk of immunization against the risk of contracting the flu.

If you don’t take the flu vaccination, “antivirals” are available to fight influenza. These should be started within 72 hours of onset in order to reduce the severity and the length of your illness.

These drugs include:


Symmetrel (amantidine) 100mg bid for 5 days for influenza A
Flumadene (ramantidine) 100mg bid for 5 days for influenza A
Relenza (an inhaler) 2 puffs bid for 5 days for influenza A or B
Tamiflu One tab bid for 5 days for influenza A or B
(Tamiflu and Relenza are currently preferred due to resistance that has developed to the other antiviral agents.)

There have been anecdotal reports of relapses being triggered by Hepatitis B and Rubella vaccines as well, but pneumococcal, H. influenza, and tetanus seem to be tolerated satisfactorily.

 

Opinion: The real story of chronic fatigue syndrome

By Ryan Prior for USA Today, October 2, 2012

Researchers published a study two weeks ago discrediting the link between the retrovirus XMRV and chronic fatigue syndrome (CFS), a little-known illness that the FDA says is as devastating as cancer, heart disease and epilepsy.

The study marked an end to a three-year saga in which much of the medical community believed the virus and syndrome were linked. That belief followed a 2009 study in Science that established a correlation between the virus and the syndrome. For many, the hope to identify the cause of the tragic illness was dashed.

I’ve suffered from CFS since October 2006, and it continues to radically change my life. But I couldn’t hardly care less about XMRV. I think researchers who focus on the single retrovirus are completely missing the picture. I’ll explain why.

But first, a little back-story: To continue reading this, click below:

http://www.usatodayeducate.com/staging/index.php/ccp/opinion-the-real-story-of-chronic-fatigue-syndrome

Pain Management - Studies in the News such as:

PTSD Symptoms developed by 1/5 of fusion patients.

Eating cherries lowers risk of gout attacks.

To read those articles plus 18 others, go to: http://www.aapainmanage.org/pain_management_news/NEW_newsletter/email/currents-2012-10.html?utm_source=newsletter&utm_medium=email&utm_campaign=Currents-2012-06&utm_content=trouble-viewing

New Support Group in Charlotte for young women with disabilities ages 16 and up. Meetings are held once a month at Caribou Coffee on Park Rd. Covered topics include safety, relationships, health and beauty, and more. For more information, contact : ariel Kliem, Therapeutic Recreation Specialist, at 704-432-4327 or email Ariel.Kliem@MecklenburgCountyNC.gov. This notification came from the newletter I receive periodically from Arthritis services. They also have a daytime Fibromyalgia/pain support group offering support/education for people with FM. Meets the third Wednesday of the month at 1:00 pm at Arthritis Services office (500 E. Morehead St, St. 320, Charlotte, NC 28202.


**********************************************************************************************

 

Our Support Group Leader and Board Members:

 

- Our Support Group Leader is Kebbie Cannon at kebbie1@windstream.net or Asst. Support Group Leader, Maggie Reed at Maggie_Reed@comporium.net

 

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Sites at www.drlapp.com where there is ample info about his clinic and making an appointment if you need. Another site, which is primarily directed toward helping your doctors treat these disorders, is: http://www.cfstreatment.info/

Also, there is the site primarily directed toward helping your primary care doctors or any other doctors who need to know this information that treat you on a regular basis. It is http://www.cfstreatment.info/

 

- Treasurer is Leslie Vann at llvann@usa.net

- Newsletter Editor is Nancy Henson at nmhenson@aol.com

- Visit our web site at www.CharlotteCFS.org