Charlotte CFS/ME/FM Support Group Newsletter

for May 2, 2013

 

Hi Everyone,

Our meeting this month, May 16, is about Caregiving with Dr. Nancy Waring as our facilitator.     In the past, we've had either a panel or perhaps one person presenting information about this vital subject.  This time, we're going to do it in a more interactive way with an open discussion with Dr. Waring facilitating.  Dr. Waring is a psychotherapist at Carmel Baptist Counseling Center and also has ME/CFS/FM herself.

A meeting reminder newsletter will be published around May12 with all details about the May 16 meeting and the meeting room. You can also find some of this info at our web site:  www.CharlotteCFS.org .

Please note that we have changed the meeting place from the Parlor to Classroom 6.

May 12th is Awareness Day for many Disorders including ME/CFS, Fibromyalgia, and Gulf War Syndrome.

Web site for National Fibromyalgia & Chronic Pain Assoc.:  http://www.fmcpaware.org/

Upcoming meetings: June 20th - Physical Therapist who is very knowledgeable of both FM and ME/CFS.

Summer Lunches:  During the summer we will not have regular meetings but meet for lunch for a totally social event.  We meet at Panera's in Matthews and Pineville.  I'll continue with meeting reminders so that you have the details on the luncheons so that you know that they're at 1:30PM and I'll tell you which location we'll be meeting at those 2 months at that time.

September 19:  We will have Dr. Charles Lapp, our medical director, and who is the only ME/CFS and Fibro specialist in the Charlotte area.

 

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It's Dysautonomia, Not Laziness

Dysautonomia can affect digestive, skeletal, respiratory and cardiovascular systems. 

By ClinicalPosters.com staff

Something is wrong. You know you're sick but family, friends and perhaps even physicians disagree. Your eyes may be dry; vision is blurred. You have headaches, dizziness (vertigo), fatigue, excessive thirst (polydipsia), intestinal issues (reflux, nausea, constipation, diarrhea), slow or rapid heartbeat (tachycardia), excessive sweating (hyperhidrosis), perspiration depletion (anhidrosis), nerve pain or numbness (paresthesia or neuropathy), and joint pain (myalgia). [1]

To read further:

http://www.clinicalposters.com/news/2011/0325-dysautonomia-mitochondria-pots.html#6

 

What a Crash Looks Like (From Co-Cure)

Note from Nancy:  If you want something to show a family member or friend, etc., this may be helpful:

Date:    Tue, 30 Apr 2013 14:29:20 -0500
From:    kelly <kellylatta66@GMAIL.COM>
Subject: NOT:
What a Crash Looks Like by Jennifer Spotila

What a Crash Looks Like

April 29th, 2013 Jennie Spotila

On the suggestion of my friend Claudia, I recorded a video of myself on the
third day after the FDA Drug Development Workshop on ME and CFS. I had to
swallow my pride to do this. Even some members of my family have not seen
me in a full-blown crash like this.

But Claudia was right: the FDA needs to compare how patients looked at the
meeting to how we look and feel afterwards. It’s not pretty. But I also
know I am not the only person struggling through a crash right now, so here
goes:

http://www.occupycfs.com/2013/04/29/what-a-crash-looks-like/


 

More articles from Co-Cure

Date:    Mon, 22 Apr 2013 10:51:55 -0600
From:    Cort Johnson <phoenixcfs@GMAIL.COM>
Subject: MED, RES: Your Brain on Viruses: Study Finds Even Common Viruses Cause Cognitive Declines

People with chronic fatigue syndrome contend with ‘brain fog’, people with
fibromyalgia battle ‘fibro-fog’ and post-cancer fatigue patients – they
have ‘chemo-fog’. Thinking clearly is not definitely not at a premium in
these disorders and researchers may have uncovered a reason why – without
studying any of them

A large study in Manhattan, New York has concluded that common infections
(including herpesvirus infections) are associated with cognitive declines
in the general population. Interestingly, they pinned the blame for the
cognitive problems not on the brain but on another area of the body.

Check out how common infections may contribute to cognitive problems in
ME/CFS and more interesting findings from the 'Manhattan Project' in

*Your Brain on Viruses: Study Finds Even Common Viruses Cause Cognitive
Declines *here -


http://simmaronresearch.com/2013/04/your-brain-on-viruses-study-finds-common-viruses-cause-cognitive-declines/

 Visit this web site for exciting information at www.simmaronresearch.com .

 

 

Date:    Thu, 25 Apr 2013 18:07:02 -0600
From:    Cort Johnson <phoenixcfs@GMAIL.COM>
Subject: RES, MED: Patients Give FDA the Scoop on ME/CFS in First Day of FDA Stakeholder Meeting

People with ME/CFS gave FDA officials a lot to think about in the first day
of the Stakeholders meeting as they gave them the lowdown on what it's like
to have ME/CFS. It wasn't pretty but it was effective. Plus we got some
physician perspectives and one researcher who proclaimed the end of ME/CFS
as we know it is near....

Check it all out in

*Patients Give FDA the Scoop on ME/CFS in First Day of FDA Stakeholder
Meeting* here:


http://www.cortjohnson.org/blog/2013/04/25/patients-give-fda-scoop-first-day-fda-stakeholder-meeting/



 

Kim McCleary Resigns

CFIDS Association of America CEO Kim McCleary announces her resignation.

http://www.youtube.com/watch?v=phg_Hx7cdPw&feature=youtu.be

 

 

Provided by a Lyme Patient:

LYME Disease

We all know about Lyme, we may know people who HAVE Lyme - I do!  That person asked me to include this info in our next newsletter and I said I'd be glad to.  I took the initiative to not ask anyone else about it because I'm that sure that its the right thing to do for thousands - probably many more - who have Lyme.

 Homepage for World Wide Lyme Protest - May 10 & 11, 2013

http://worldwidelymediseaseprotestus.blogspot.com/

Sign Petitions if nothing else -- for the childrens' lives that are being permanently destroyed.

http://worldwidelymediseaseprotestus.blogspot.com/p/active-petitions.html

 

 

From Co-Cure 4/24/13

Date:    Tue, 23 Apr 2013 09:33:39 -0500
From:    Tate Mitchell <tatemitchell@gmail.com>
Subject: NOT: Biological breakthrough offers fresh hope for ME sufferers

http://www.thetimes.co.uk/tto/science/article3746102.ece

Biological breakthrough offers fresh hope for ME sufferers
Hannah Devlin Science Editor
Last updated at 12:01AM, April 23 2013


Scientists have found compelling new evidence for an underlying
biological cause for the constant fatigue suffered by ME patients.

The study revealed abnormalities in the muscle cells people suffering
from ME which are likely to contribute to feelings of tiredness and
the inability to cope with sustained physical activity that many
experience.

An analysis of muscle biopsies suggested that the cells had undergone
substantial changes making them less able to cope with exertion.

The finding shows that whatever the initial trigger for ME, the
condition leads to a cascade of physical changes right down to the
cellular level.

Despite a growing body of evidence that ME has real physical symptoms, some patients still report facing stigma due to popular misconceptions that the condition is "all in the mind".

Professor Julia Newton, dean for clinical medicine at Newcastle
University who led the study, said that the latest science was
changing the way people view ME.

"You change people’s perception of this terrible symptom," she said.

She added that in some cases the patients reported feeling vindicated
by the findings which reveal basic biological differences between
patients with ME and healthy volunteers.

Professor Newton presented the findings in London yesterday at a
meeting marking the launch of a UK ME collaboration aimed at
generating more high quality research into the disease.

In the study, scientists took muscle biopsies from ten patients and
from ten healthy but sedentary volunteers.

The muscle cells were grown into small pieces of muscle in culture,
and subjected to "exercise" in the form of electrical impulses.

The cells from ME patients produced on average 20 times as much acid
when exercised, suggesting an underlying cause for the aching muscles that patients often experience as soon as they begin to exercise.

The cells also showed other abnormalities, such as reproducing more slowly.  "We have found very real abnormalities," said Professor Newton.

The Newcastle team now hopes to use the muscle samples as in-vitro
test beds for potential medications that could help reverse the
symptoms of ME.  However, she said that scientists are still struggling to understand what causes the condition in the first place.

The disease affects more than 600,000 people in Britain with a quarter
of those cases unable to perform even basic activities or look after
themselves. Current treatments on the NHS include talking therapy and
exercise.

             

To read the ProHealth Newsetter,

for topics such as:

Report From Paris: Peterson Reports Antiviral (Vistide) Effective in Treating Herpesvirus Infected Chronic Fatigue Syndrome (ME/CFS) Patients
At the HHV6 Conference in Paris. Dr. Peterson reported on the results of a study of severely ill CFS/ME patients given a course of Vistide. Remarkably, seventy percent of patients showed significant improvement.

 -- or --

Is Chronic Fatigue Syndrome an Autoimmune Disease?
Evidence has been accumulating for decades that CFS/ME is an autoimmune disease. Yet, researchers have been ignoring it. Recently, studies have pinpointed some of the autoimmune features of CFS/ME, and researchers have re-examined CFS/ME as an immune system disorder.

go to: 

http://www.prohealth.com/em/EM042413C/index.cfm?slvor=11092.1093580.0.1.0.86766&eid=nmhenson@aol.com

 

The following is the #1 article from that newsletter:

You Are Not Alone

By Erica Verrillo • ProHealth.com • April 24, 2013

One of the harshest punishments that CFS/ME inflicts upon its sufferers is isolation. Human beings are social animals, and we do poorly when we are placed in situations that remove us from contact with other people.

Isolation is not the same as loneliness. Loneliness is an emotional state, the result of feeling alone, even when other people are present. Isolation is a state of being prevented from interacting with other people. The distinction between the two terms may appear to be a fine point, but the crucial factor is that isolation is usually imposed upon us. The kind of sustained loss of control produced by isolation places people in a state of enforced helplessness, if not outright trauma.

Of course, there are those who voluntarily remove themselves from society, but these people – recluses –  are usually content with their state of separation from the world. Why? Because they have chosen it. When people don’t choose to be isolated, when it is forced upon them by circumstances beyond their control, it is unbearable. This is why solitary confinement is the ultimate punishment for inmates in prisons. It robs inmates of their humanity.

To read further:  http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=18019&B1=EM042413C&utm_source=EM042413C&utm_medium=em&utm_campaign=MECFS&slvor=11092.1093591.0.1.0.86766&eid=nmhenson@aol.com

 

How to Recognize the Plastics That are Hazardous to You

Plastic #1: Polyethylene Terephthalate (PET) (1 of 7)

Typically used to make bottles for soft drinks, water, juice, mouthwash, sports drinks and containers for condiments like ketchup, salad dressing, jelly and jam, PET is considered safe, but it can actually leach the toxic metal antimony, which is used during its manufacture.

http://articles.mercola.com/sites/articles/archive/2013/04/11/plastic-use.aspx?e_cid=20130421_SNL_MS_1&utm_source=snl&utm_medium=email&utm_content=ms1&utm_campaign=20130421

 

Proposed New Screening Tool Identifies Likely Fibromyalgia Patients

In recent years, fibromyalgia experts have been trying to develop new and better ways to accurately diagnose fibromyalgia as quickly and easily as possible.   The original diagnostic criteria, established by the ACR in 1990, relied on a single symptom – pain – and required that the diagnosing physician be trained in how to do a manual tender point exam. While many still feel that the tender point exam is the most accurate way to diagnose FM, not all doctors have the time or inclination to learn how to correctly conduct the exam. Too many people were still waiting several years for an accurate diagnosis.   Then in 2010, the American College of Rheumatology (ACR) proposed a new set of diagnostic criteria that elim...

You can read the rest of this SharePost by visiting:
http://www.healthcentral.com/chronic-pain/c/5949/160655/identifies-fibromyalgia

ChronicPainConnection.com Team, Part of HealthCentral

 

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

- Howard Honeycutt, Publicity Chairman at honeycutt2194@carolina.rr.com

- Visit our web site at www.CharlotteCFS.org