Charlotte CFS/ME/FM Support Group Newsletter

for January 1, 2013

 

Happy New Year

 

Dear Friends,

This is the Mid-Month Newsletter - I'll have more details on meetings and speakers in the reminder you'll receive just prior to the meeting (Board Meeting).

The last few months have provided two exceptional meetings for our support group. November's meeting, with Dr. Lloyd Bridges, Pinelake Family Practice, Matthews, was very exciting indeed. And then the Christmas Party, which I unfortunately missed, had an excellent turnout despite the horrible rainy conditions.

Our next meeting, coming up January 17th, will be a planning meeting for the Administrative Board to work on speakers for the coming year. We already have a meeting scheduled for March with Myra Preston (review her web site at

http://www.siberimaging.com/about.html

 

Quick Note About Upcoming Meetings

 February Meeting - Open Discussion

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

 Remember, more details in the reminder meeting in 2 weeks.

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

 Sign Ampligen Petition

http://www.ipetitions.com/petition/ampligen/?utm_medium=email&utm_source=system&utm_campaign=Send%2Bto%2BFriend

  

Fibromyalgia Network December E-News

http://www.fmnetnews.com/pages/enews/eNewsAlert-12-12.html

 

Nutrients to Combat the Modern Stress Epidemic (ProHealth.com)

By Jeffrey Castle*

Be it work, finances, relationships, or health issues, most of us experience stressful events at some point in our lives. But today, researchers are witnessing levels of stress that are virtually unprecedented.

A startling 80% of Americans now report experiencing intense, chronic stress over personal finances and the economy.
(1) And the problem is global: the World Health Organization estimates that stress-related disorders affect nearly 450 million individuals worldwide.(2)

The effects of this pandemic on the public health are profound.

Researchers have linked the cumulative impact of stress to a host of age-accelerating conditions and degenerative diseases.
(3)

These range from cardiovascular disease to diabetes to various cancers.


To read more: http://www.prohealth.com/library/showarticle.cfm?libid=17776

 

 Subject: NOT: ME/CFS Alert Episode 38 w/ John Chia

Date: Sat, 22 Dec 2012 13:19:48 -0600
From: Tate Mitchell <tatemitchell@gmail.com>

http://www.youtube.com/watch?v=NhU-G0loqtY

This runs 12 minutes and is Part 1 of a talk with John Chia.


ME/CFS Alert Episode 38
with Dr. John Chia
Infectious Disease Specialist

Subject: Cancer Medicine gives ME/CFS sufferers hope!

Date: Thu, 20 Dec 2012 05:19:04 -0600
From: Tate Mitchell <tatemitchell@gmail.com>

Note: A write up of the recent ME/CFS research conference which took
place on Sept. 11, 2012 and which was set up by Swedish patient group
RME in the Swedish magazine 1.6 Miljonerklubben, aka 1.6 Million Club.

For more info on conference plus links to conference videos-
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=CO-CURE;919c41c3.1210A

http://rme.nu/sites/rme.nu/files/1_6_miljoners_nr4_2012.pdf

1.6 Miljonerklubben Nov. 4, 2012


Joy Notification by Professor Olav Mella:

Cancer medicine Rituximab, according to a Norwegian study published in
2011, led to improvements in two of three patients with the neuro-immune disease ME/CFS (chronic fatigue syndrome).

Now a follow-up study that the effect is also considerably more
prolonged than had previously been seen. This statement gave joy Olav
Mella, a professor at Haukeland University Hospital in Bergen and one
of the researchers behind Rituximab studies, in a speech at a
well-attended ME/CFS conference in Stockholm early last fall. The
results of the current study is unpublished, but the preliminary
findings are clear, according Mella. Has already been seen that drug
Rituximab helps with ME/CFS, in isolated cases, a dramatic improvement
has been observed. Now we can see that the preparation has benefits
for the long term. However, he is still secretive about the details of
the current study, expected to be published during the first half of
2013.

28 ME/CFS sufferers treated with Rituximab in the ongoing follow-up
study. They get six infusions over a 15-month period, compared with
the old, placebo-controlled study, in which two infusions were given
for 14 days, and patients were then observed for one year. The
previous study, published in the prestigious scientific journal PLoS
One, 2011, gained international attention and gave ME/CFS sufferers
worldwide hope for a future effective treatment for the disease.

Rituximab suppresses blood B lymphocytes. The research team Olav Mella
and Oystein Fluges findings indicate that there are autoimmune
components linked to ME/CFS. At the seminar in Stockholm also appeared
Professor Christopher Snell from Pacific Fatigue Laboratory,
California, who has studied in one of the main symptoms of ME/CFS,
namely deterioration after exertion. It is well known that ME/CFS
sufferers exhibit worsening malaise and general symptoms increase even
after relatively little effort, and it requires at least one day of
recovery afterwards, sometimes considerably longer, depending on how
sick you are and how much overworked himself. That's why ME/CFS
sufferers can not train themselves to a better functional capacity.
The deterioration is often a delay of several days.

Christopher Snell's published research showing by objective markers
that ME/CFS sufferers become significantly worse during cycle tests
repeated after two days. He has also shown that this deterioration is
different from the fatigue that can be seen after repeated stress in
healthy people and in people with other diseases. The most important
measurements are aerobic capacity and oxygen uptake at the so-called
anaerobic threshold. The results are an important piece of the puzzle
for the understanding of ME/CFS.

The seminar also appeared Per Julin, chief physician for ME/CFS
project at Danderyd Hospital, who presented the project experiences to
date, and Professor Kristian Borg, Department of Clinical Sciences at
Danderyd, who pointed to parallels between ME/CFS and post-polio
syndrome.

The seminar was held in a crowded county hall in County Hall in
Stockholm, and was organized by the National Society for ME patients'
local union in Stockholm in collaboration with the Adult Education
Association. 131 listeners had flocked to the seminar, including many
nationally leading researchers in the field, as well as doctors,
government officials, and of course patients and relatives.

MORE ABOUT ME/CFS

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome),
previously known as chronic fatigue syndrome. The disease affects men,
women and children. Most common age at onset is 30-50 years. More than
70% are women. Nearly 40,000 people in Sweden is estimated to have the
disease. It is therefore more common than some other neurological
diseases such as MS and Parkinson's. The onset usually occurs suddenly
and symptoms are many. Fatigue, even after small effort, sleep
problems, headaches, muscle and joint pain, fever, sore throat, memory
and concentration problems, confusion, sensitivity to light and sound,
dizziness, indigestion etc.

The cause is unknown. Triggers can include: infection, often flu-like,
recent vaccinations, surgery, physical trauma, environmental toxins,
etc.. There is no cure for ME/CFS, only palliative treatments. Less
than 10% are healthy. Besides clinic at Danderyd, is just another
specialized unit for ME/CFS, namely Gottfriesklinien in Mölndal, which
receives patients from Västra Götaland and Halland. 17 of 20 counties
is therefore without such receipt. Research on ME/CFS is conducted
primarily in the U.S., UK, Japan, Belgium and Australia. Patient
Association RME's website: www.rme.nu

 

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. His other site, which is primarily director toward helping your doctors treat these disorders, is http://www.cfstreatment.info/

 

- Our 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