Charlotte CFS/ME/FM Support Group Newsletter

for February 18, 2013

 

Hi Friends,

At this month's meeting we will be having an open discussion time - topics of your choice.  Our meetings are always the 3rd Thursday of the month, which means this Thursday, February 21, at 7:00 PM -- 8:30/9:00 PM.

This will also help the Administrative Board in choosing speakers and topics for future meetings. Please come with ideas and a "healthy" volunteer.  Administering to the sick by the sick is difficult - sure would be nice to have a healthy volunteer.

Next Month's Meeting, March 21 Meeting - Myra Preston - Go to http://www.siberimaging.com/about.html to learn more about Myra's work.

 

**************** About our Meetings ***************

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.

And if you need further directions or have questions, you can call me at 704-563-0657.

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

NOTE: We are always looking for new volunteers so if you are interested in helping in your area of interest or expertise, please see any of the members as listed at the bottom of this newsletter.

 

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ME Lecture  by Dr. Kenny DeMeurlieu at the WP Institute

 

** ME/CFS from Infectious Disease to Autoimmune Disorder by Annette Whittemore

The following link will take you to the WPI Blogspot where you can read about Dr. DeMelieu's Lecture:

http://www.wingsofhopefornid.blogspot.com/2013/01/me-lecture-by-dr-kenny-de-meirleir-at_30.html

 

Study suggests Low Dose Naltrexone and safe, low cost drug for relieving pain in FM...and ME/CFS?

Low Dose Naltrexone significantly reduced pain and improved mood and
quality of life in FM patients in a recent Stanford Study. But what does
that mean for chronic fatigue syndrome (ME/CFS) patients? Some indications
suggest it may be helpful there as well.

Learn more about LDN and FM and ME/CFS in:

Successful Low Dose Naltrexone Trial Fibromyalgia trial points to safe,
low-cost therapy; Implications for Chronic fatigue syndrome
at:

http://www.cortjohnson.org/blog/2013/02/12/successful-low-dose-naltrexone-
fibromyalgia-trial-points-to-safe-low-cost-therapy-implicati
ons-for-chronic-fatigue-syndrome/

 

Cort Johnson's 3 Part Interview with Tom Kindlon Re: CBT & GET (On Co-Cure)

Note from Nancy: I have followed many of Tom Kindlon's articles over the years so I skimmed thru these and I skipped to the end and saw this short comment regarding Dr. Martin Lerner's take on exercise.

Dr. Martin Lerner “prohibits” exercise until CFS patients reach 7 or more on his Energy Index Point Score. … A score of 7 describes an individual who can work a sedentary 40-hour per week job, without needing to nap during the day, is up from 7AM to 9PM, and does light housekeeping. He says, “if you exercise before that you’re going to go backwards”.

Note from Nancy: I found his following paragraph very interesting:

One thing to remember with all this data is that the more severely affected have invariably been excluded from trials of CBT and GET so we know little about this group. Most patient groups, I think it’s true to say, think the more severely affected should be extra careful with any programs that encourage the scheduling of increased activity. Some physicians have also commented on this issue. Dr. Darrel Ho-Yen, a microbiologist who published several papers in the past and wrote the popular book, “Better Recovery from viral illness”, says he does “not recommend an emphasis on greater activity until a patient feels 80% normal”.

If you are reading more about this, the following link will take you to the post in today's Co-cure (2/19/13):

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1302c&L=co-cure&F=&S=&P=13295

 

 

Web Site for CDC/Medscape Education for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

http://www.medscape.org/viewarticle/759095

Info From Dr. Lapp's Newsletter - December 2012 ME-Letter

from Hunter-Hopkins Center, Charlotte North Carolina

Research Continues on the Clinical Assessment of CFS

For over one year Hunter-Hopkins has been participating in a Centers for Disease Control contract study, the Clinical Assessment of CFS. Patients who have chosen to participate have transmitted their de-identified records to a central server at the CDC. There specialists can determine how various medical groups diagnose and manage persons with CFS/ME (PWCs). We hope that this will lead to a standard intake form and formal approach to CFS/ME that can be taught to many other healthcare providers. Practitioners participating in this project include Drs. Lapp and Black, Dr. Andreas Kogelnik, Dr. Dan Peterson, Dr. Cindy Bateman, Dr. Rich Podell, Dr. Klimas, and Dr. Natelson.

 

Phase One of this study will draw to a close in March 2013. We sincerely thank all 37 of the HHC participants who have already uploaded their data to the CDC, and encourage the rest of our volunteer group to take this time to upload all of their data as well. We really appreciate all of you who have volunteered to help!

We are already making plans for Phase Two of this contract, which may involve an annual follow-up, blood work, cognitive testing, or even exercise testing. The protocol has not yet been completed, and we don’t know who will be invited to participate. In the meantime, the CDC has promised to reveal their findings to date on a dedicated website at: http://www.cdc.gov/cfs/programs/clinical-assessment/index.html

Rituximab

Drs. Oystein Fluge and Olav Mella wrote in the October 19, 2011 PLos ONE edition that they serendipitously treated two CFS/ME patients with the chemotherapy drug, rituximab, and the patients recovered from both their lymphoma and their CFS/ME. Fluge and Mella went on to study 30 more CFS/ME patients in a randomized. placebo-controlled study. Of the 15 patients who received Rituximab, ten (67%) had lasting improvements (not necessarily remissions) in fatigue and other symptoms. The mean response from two treatments with the drug was 25 weeks (range 8-44 weeks), but response was somewhat delayed in onset (2-7 months after treatment).

 

Evidence continues to mount concerning the safety of this treatment, and its effectiveness in treating CFS/ME. Nevertheless, US practitioners are anxiously awaiting the results of studies abroad before offering this therapy. Studies are underway to determine the best dosage and intervals for treatment. We are only aware of one center in the US that has been treating a small number of PWCs with rituximab, but our research group, the OMI Merit Group, considers Rituxan (rituximab) the number one priority and we hope to be offering this treatment in 2013. At this time a single dose of Rituxan costs about seven thousand dollars.

Hunter-Hopkins Facebook Chat Room

If you have not already joined the fun, please have a look at the Hunter-Hopkins chat room on Facebook! Just search for Hunter-Hopkins Center and click on the ME/CFS/FM Private Chat Group. There you will go for a vicarious car ride in the mountains or “travel” to Hawaii where you can sit on a beach, sip drinks with umbrellas in ’em, or try your luck in the surf! You can just listen in, or participate in the conversation – it is entirely up to you! But don’t miss this opportunity to meet with other PWCs like yourself …

 

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