Charlotte CFS/ME/FM Support Group Newsletter

for October 31,  2013

 

Hi Everyone,

I'm going to try to provide basic information about ME/CFS and Fibro beginning with this issue of our newsletter to draw attention to various websites that provide a wide variety of information about ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and Fibromyalgia.  We have many new members coming to our support group meetings and they've asked for information to aid in their research of these conditions. I'm hopeful that this will help.

A few excellent websites are included at the bottom of every newsletter.  For example, there is a fantastic self help site by Bruce Campbell (with some involvement by Dr. Lapp) at www.cfidsselfhelp.org .  There is a book that you can also get to help you have access of most of that information in book form.  The site can help you get a copy of that book. 

Don't forget our next meeting that is November 21.   The speaker is Chrys Kub, Yoga Instructor AND Physical Therapist.  She teaches how-to-teach Yoga to other Professionals & is a specialist in disabled Yoga Practice. It is a very HEALING, gentle type of Yoga. She can hook people up with her students for reduced rates.  (They would be practicing under her tuteledge)!)  And she'll come to you if needed. Her web site is:  http://www.yogatherapycharlotte.com/

The reminder newsletter will be coming to you on or around Nov 17th before the meeting with all the information as always.

 

WE NEED VOLUNTEERS to help with refreshments, coming early to set up chairs, suggest doctors to speak if you have a particularly fibro or ME/CFS friendly expert. We cannot allow mosty chiropractic presentations as they are selling a service.  The difference is that they call us.  Doctors like Bridges, Waring, Lapp, etc. don't need to advertise.

 

Thoughts About M.E.

This Blog is for ME (CFS) Advocacy - I urge you to get acquainted with its mission and to consider signing the letter in support of the Canadian Case Definition for ME/CFS.

http://thoughtsaboutme.com/

 

National Fibromyalgia & Chronic Pain Association

This is one of the most important web sites for those who have been diagosed with Fibromyalgia.  If you subscribe to their online newsletter, you'll get the latest information made available directly to you. You won't have to wait for someone else to report it to you.

To access the NFCPA web site and subscribe to their newsletters, go to:

http://www.fmcpaware.org

 

What is M.E. - How Did it Get Defined Originally

We discussed many issues and I'd like to direct people to a web site that will help them understand what ME (myalgic encephalomyelitis) is.  There are many sites but this is a great one to start with.

http://www.name-us.org/DefintionsPages/DefRamsay.htm

 

www.ProHealth.com  -  This site offers a multitude of information about ME/CFS and Fibromyalgia.  When you go to the web site, you just click on Fibromyalgia, which you'll find at the top of the screen.  Or, if you want info on ME/CFS, click on that and you'll go to a huge variety of info about that disorder.

 

Dr. Lapp was our speaker for the September meeting this year and his topic was Cognitive Dysfunction

Dr. Lapp also published his newsletter this month and one article was about  cognitive issue.  And that topic was published in Cort Johnson's Blog Article October 20.

To read Dr. Lapp's recent newsletter, go to:  http://drlapp.com/news/me-letter-september-2013/

Cort Johnson's Blog Article of Dr. Lapp's on Cognitive Issues:

http://www.cortjohnson.org/blog/doctor_blogs/brain-drain-gain-dr-lapp-cognitive-problems-chronic-fatigue-syndrome/

 

Pain Management

A number of pharmacological treatments for fibromyalgia are available for prescription. The first to be approved by the U.S. Food and Drug Administration to treat fibromyalgia was pregabalin (Lyrica®); the second was duloxetine (Cymbalta®); and the third was milnacipran (Savella®). 

 

 

Other FM medications are currently in development, and may soon receive FDA approval to treat fibromyalgia. Additionally, healthcare providers may treat patients' FM symptoms with non-narcotic pain relievers (e.g. tramadol) or low doses of antidepressants (e.g. tricyclic antidepressants, serotonin reuptake inhibitors) or benzodiazepines.

 

Patients must remember that antidepressants are "serotonin builders" and can be prescribed at low levels to help improve sleep and relieve pain. If the patient is experiencing depression, higher levels of these or other medications may need to be prescribed. Lidocaine injections into the patient's tender points also work well on localized areas of pain. An important aspect of pain management is a regular program of gentle exercise and stretching, which helps maintain muscle tone and reduces pain and stiffness.

 

NOTE from Nancy:  There are also lidocaine patches available by prescription.

 

A Fibromyalgia Doctor’s Advice for Dealing with the Physical Tasks of Daily Life
ProHealth.com; by Dr. Mark J Pellegrino, MD*
April 21, 2010

A specialist in musculoskeletal function and pain (Physiatry), fibromyalgia doctor Mark Pellegrino suggests many “basics” that can help those with FM and other painful conditions to approach daily chores in ways that are kinder to the muscles. An FM patient himself, he knows that ‘every little bit helps.’  To read the very long list of hints, go to:

http://www.recoveryfromfibro.com/2011/12/dr-mark-pellegrino-shares-tips-for-fibromites/

 

 

Co-Cure.org

 

This web site is a clearinghouse for the latest information regarding ME/CFS and Fibromyalgia and related issues such as GWS and MCS.  You can go in and sign up for a daily digest.  If you have a problem, there are volunteers available to help you.  This is very good information.

 

www.co-cure.org

 

 

 

FDA Requests Input from Fibromyalgia Patients

The following SharePost was recently posted by Karen Lee Richards:

This is your chance to tell the FDA how fibromyalgia has impacted your life and what you would like to see in the way of treatments for FM.   The FDA has announced a public meeting on fibromyalgia, as part of their Patient-Focused Drug Development commitment, and has invited patients to participate, attend and/or make comments. According to the announcement, “The public meeting is intended to allow the FDA to obtain patients' perspectives on the impact of fibromyalgia on daily life as well as the available therapies for fibromyalgia.”   The public meeting will be held on December 10, 2013, from 1 p.m. to 5 p.m. In Silver Spring, Maryland. Registration to attend the meeting must be received by November 27, 2013...  To read the remainder of this article, go to:

http://www.healthcentral.com/chronic-pain/c/5949/163465/requests-fibromyalgia

 

The Simmaron Research Foundations Special ME/CFS Project

 

Hundreds of precious samples from sit frozen in the NIH's sample repository. Gathered by ME/CFS experts during the big XMRV study, many are from long-term, highly debilitated patients.

Nobody outside the government has used them - until now. The Simmaron Research Foundation is the first non-governmental organization granted access to these samples - for a special project to examine tick and mosquito-borne disorders in this disorder.

Could your ME/CFS have started with a tick bite? How about something as small as a mosquito bite?

Check out Simmarons NIH project, as well as what they accomplished last year, and what they're up to next year in... To continue reading this article, go to:

http://www.cortjohnson.org/blog/2013/10/16/simmaron-research-foundations-special-chronic-fatigue-syndrome-project/

 

The Communicator: A Talk with Former NIH ME/CFS Program Chief Dennis Mangan

 

 

Dennis Mangan was like a whirlwind in the two years he was in charge of the NIH's ME/CFS program.

First he created a listerv to better communicate with the patients, then he changed the website, then he changed the name to ME/CFS, then, in collaboration with patients he created the 'State of the Knowledge' Workshop - the first major NIH workshop on chronic fatigue syndrome in almost ten years.

Under Dennis the Chronic Fatigue Syndrome Working group, which hadn't met in a year, was enlarged and revitalized, but all of a sudden Dennis was gone in late 2011 - taking early retirement to deal with a family situation.

As Dennis Mangan joins the Board of Directors of the Simmaron Research Foundation, read what he has to say about his time at the NIH, why he's continued to stay heavily involved with the ME/CFS community and what he thinks about the IOM contract in...  To read this article, go to:  http://simmaronresearch.com/2013/10/dennis-mangan/

Simmaron Research - to request their newsletters, to: 

http://simmaronresearch.com/news/

 

Brain Burn, Brain Drain and Low Blood Flows: A Neurologist on 'Cognition and Chronic Fatigue Syndrome - What Do We Know'?'] (from Cort Johnson's Blog)

 

 

We just published Dr. Lapps take on how to how to treat the cognitive problems in ME/CFS. Now we're diving into cognition full-bore with this overview of cognition and ME/CFS by a neurologist, Dr. Lange, and Dr. Vernon, the research director of the CFIDS Association of America.

Brain drain?.Brain burn? Low brain blood flows?.What exactly is going on to cause the cognitive issues in ME/CFS? Find out as we take a look at a CFIDS Association webinar lead by Dr. Lange, a neurologist, on ME/CFS and cognition..

Find out in:

http://www.cortjohnson.org/blog/2013/10/24/brain-burn-brain-drain-low-blood-flows-neurologist-cognition-chronic-fatigue-syndrome/        

 

   

 

 

 

 

16 Additional ME/CFS Experts Added Signatures to Open CCC/IOM Letter to Sebelius

Posted on by Jeannette Burmeister--Amped up. Ready to go. (TM)

On September 23, 2013, thirty five ME/CFS experts sent an open letter to HHS Secretary Sebelius informing her that they have come to a consensus about the use of the Canadian Consensus Criteria (CCC) as the official disease definition and urging HHS to also adopt the CCC as the sole case definition as well as to abandon efforts to engage the Institute of Medicine( IOM)—an organization completely inexperienced in developing disease definitions and in the disease itself—to create a case definition. Secretary Sebelius has shown the experts no respect at all and has, in fact, not even found it necessary to respond to them, let alone heed their advice. Yesterday, the experts doubled down and added sixteen more signatures to the letter.  To continue:

http://thoughtsaboutme.com/2013/10/26/16-additional-mecfs-experts-added-signatures-to-open-ccciom-letter-to-sebelius/

 

Health Rising: Jumpstarted: The Kickstarter Campaign Phase II: Making Real A "Big Crazy Vision" For ME/CFS

 

 

An amazing response from the ME/CFS Community enabled the 'Canary in a Coal Mine' team to meet their initial goal of raising $50,000 in just three days.

Their only mistake was underestimating how much the ME/CFS community wants to see THEIR story up on the big screen. They REALLY want to see it up there.

So with 3/4's of the campaign remaining, this is no longer a 'Kickstarter' campaign; it a get the whole film ($200,000) funded campaign, and they're almost halfway ($82,000) there.

Check out Kirin and Jennifer's new video and spread the word: The Kickstarter campaign to produce the first ME/CFS film has only just begun....

http://www.cortjohnson.org/blog/2013/10/29/jumpstarted-kickstarter-campaign-canary-coal-mine-phase-big-crazy-vision/

Support Group Leader, Board Members, and Sources of Info for Doctors and Patients:

-  Kebbie Cannon is our Support Group Leader (704) 843-1193 at kebbie1@windstream.net

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Site at www.drlapp.com where there is ample info about his clinic and making an appointment if you need. It offers many links to other sources of information.

- http://www.cfidsselfhelp.org/ - Going thru Dr. Lapp's site you'll find links to various sorts of help, one of the best self help sites on the Internet is Bruce Campbell's self-help site (Dr. Lapp was involved in this).

- Treatment - Another site, which is primarily directed toward helping your doctors treat these disorders but that info is quite beneficial for patients to be aware of, is: http://www.cfstreatment.info/

- Treasurer is Leslie Vann at llvann@usa.net

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

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

 

- Visit our web site at www.CharlotteCFS.org