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

Charlotte Area ME/CFS and Fibromyalgia Support Group Meeting Reminder for Thursday, March 19, 2009

Sharon Presbyterian Church

C. L. Activity Building Parlor

7:00 - 9:00 PM

For more details, contact Kebbie Cannon at kebbie1@alltel.net or 704-843-1193

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

Upcoming Meeting    - Thursday, March 19, 2009

Time:                             - 7:00 - 9:00 PM

Topic:                            - Session 3 - Target Setting, Pacing, Fatigue and Pain

NOTE:  See below for the meeting reminder of the Gastonia CFS/FM Support Group.

April 16 -  Session 4, Target Setting, Stress Management, Sleep Issues 

May 21 - Session 5, Target Setting, Stress Management, Feelings/Loss/Depression/Worry

June 18 - Session 6, Target Setting, Feelings/Loss/Depression/Worry, Relationships

NOTE:  The summer months, July and August, will not be regular support group meetings. Instead we will meet for lunch somewhere (for those who wish to participate).  More information will be available later.

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

Date:    Sat, 7 Mar 2009 19:13:34 -0500
From:    "John Herd <johnherd@JOHNHERD.COM> [via Co-Cure Moderators
         <co-cure-mod@listserv.nodak.edu>]" <auntiem6@PTD.NET>
Subject: ACT:ME/CFS News wire (satire)

NEWSFLASH
ME/CFS News wire

On March 12th between 150 and 200 ME/CFS medical investigators will be gathering at the Peppermill Resort and casino in Reno Nevada.

Some may believe the researchers and clinicians are coming together to  share the latest advancements in medical research and clinical care.  Contrary to such beliefs, there may be a greater impetus for them 
coming together at a casino.

History may show that receiving governmental grant funding for ME/CFS  biologic research carries lower odds of a payoff than playing the slot machines.

Very few researchers who have submitted grant applications to the National Institutes of Health (NIH) have heard the ching ching coming from Bethesda. In recent years the odds of getting a grant award have 
decreased even more.

ME/CFS has remained one of the least funded medical conditions funded by NIH over the past two decades. Of the several hundred illness conditions receiving NIH funding, ME/CFS has never climbed out of the 
bottom 10 and is currently in the bottom 5.

The total economic cost of ME/CFS on the US economy has been estimated to exceed 7 billion dollars annually. It is clear that the Department of Health and Human Services has not considered the national economics of ME/CFS when considering its meager response to the illness.

So please send your slot machine tokens to Save an ME/CFS Researcher,  Inc to keep ME/CFS the moving forward.

This has been a satire, but sadly much of the information conveyed is all too true.

John Herd

Why They Want to Classify Us as Mentally Ill - Its much, much cheaper to support, read this:

http://www.nami.org/gtsTemplate09.cfm?Section=Grading_the_States_2009

What has been budgeted for CFS Research

Year   Budget   Reference
           10^6 $   FY
--------------------------
2003   6.833    2005
2004   5.319    2006
2005   5.967    2007
2006   4.895    2008
2007   4.834    2009
2008   4.750    2009
2009   4.728    2009

Date:    Tue, 10 Mar 2009 13:44:55 -0400
From:    "Jeremy Bearman <jzzazz@yahoo.com> via Co-Cure Moderator"
         <ray@co-cure.org>
Subject: ACT: Plea to the ME community

To everyone out there with cfs/me and those that care for them:

The nih budget has been slashed from 5 million to 4 million. Despite affecting more than a million americans it is much more poorly funded than diseases affecting far fewer people. It would appear that the NIH is contemptuous of people wth CFS/ME based on their behaviour in the past 10-12 years (e.g. closing
down all three CFS centres of excellence)

The CDC, in turn, are not currently conducting research that is in the best interests of the patient community.

It is very important that everyone in the US writes to their elected representative to protest this state of affairs.

In addition to the government funded research there has to be a parallel, privately funded research track. This is essential at least until we reach a point where public health officials start taking CFS/ME more seriously.

Given the invisible nature of the symptoms,the fact that where people do die from ME, it takes many years and is usually due to a complication and also due to the fact that it has been very hard to reproduce abnormalities uncovered in studies, this may all take quite a few years.

In the meantime the majority of patients with ME/CFS are on their own mission, looking for protocols and 'forward thinking' medical practitioners to treat their symptoms.

If cancer was still poorly researched and patients devalued, do you think the answer would be to go haywire for new supplements and at best experimental treatment protocols, instead of writing their senators and supporting research??

People with ME/CFS are devaluing and deligitimizing this illness by spending disproportionate amounts of money on unproven treatments at the expense of
supporting conventional researchers with a proven track record in researching this
illness.

People often write back to me saying that they can't wait for science to produce the answers. What should we depend on then alchemy? The quicker we take the initiative to invest in quality non psychiatric, biomedical research, the quicker things will start looking brighter.

I have had ME for 15 years now and I wish I had started investing in research sooner. I too used to tell myself that I couldn't wait for science to produce an answer but 15 years have gone by in a flash and the situation is not encouraging.

The CFIDS association had to beg and plead with the ME/CFS community to come up with 1 million dollars, effectively 1 dollar per person ill in the US. Terrifyingly they raised this money from only 1000 individuals, including an individual donation of 100000 dollars.

This situation has to change. Unless we realize that we are all in the same boat, metaphorically speaking, the research situation ( together with our prospects of a better quality of life through proper treatment) is unlikely to improve.

If it matters so much to us and if we take this illness seriously, then surely we will do the rational and logical thing and support conventional research

Recommended

1.The ME association's Ramsay research fund

2. ME Research UK

3. IACFS/ME-1 million dollar research drive

Thanks for taking the time to read my plea.

Jeremy Bearman
BSoc Sc PDM MBA

Blue Zircon/Topaz 9x6mm

Underactive Adrenal Gland - Stresses and Problems with the Body's 'Gear Box'

by Dr. Sarah Myhill, MD*
March 10, 2009

Dr. Sarah Myhill is an internationally recognized UK-based fatigue specialist focused on nutrition and preventive medicine,* who sees ME/CFS as a stressor-induced disorder. Comparing the body to a car, she describes the cells' energy-producing mitochondria as the engine, thyroid as the accelerator pedal, and the adrenal system as the gear box.

The adrenal gland is responsible for the body's hormonal response to stress.

It produces adrenaline, which stimulates the instant stress hormone response (fight or flight reaction). It also produces cortisol and DHEA, which create the short- and long-term stress hormone responses.  To read more:  http://www.prohealth.com/library/print.cfm?libid=14383

Tips for Winning a Fibromyalgia or Chronic Fatigue Syndrome Disability Case...and...What actually happens at a Social Security Disability Hearing?  ATTN:  This is an excellent article!

by Jonathan Ginsberg, Attorney, Atlanta, Georgia*  February 21, 2009

Jonathan Ginsberg is a Social Security Disability case lawyer specialized in representing patients with chronic illnesses such as Chronic Fatigue Syndrome and Fibromyalgia. He maintains a "Social Security Disability" web site offering resources from disability lawyers all over the U.S., plus a blog and radio program where patients may submit questions and receive professional responses. Though he uses examples from FM cases here, the concepts apply equally to CFS and other "invisible" disabilities.

To read the article:  http://www.prohealth.com/library/print.cfm?libid=12585

Co-Cure Article 

Subject:      Cheney seminar to include stem-cell therapy results on two patients
 
The following announcement was made in December, but I wanted to update it with an exciting clarification. Dr. Cheney will be presenting an up-to-date broad overview of CFS with a special focus on two key topics
as outlined below, and will also present detailed info on his four-part treatment protocol. As someone disabled for over 20 years who is getting her life back, I can personally say this is the most comprehensive,
effective protocol I've ever experienced.

Dr. Cheney has now given me permission to share that step four of his protocol is stem cell therapy. (Not every patient will need stem cell therapy. Many younger patients, or those ill for a shorter period, have
returned to full functionality with just the first three steps.)

The first two CFS patients received a series of umbilical cord stem cell transfusions over the first ten days of February, and the pre and post testing done before and  after the stem cell transfusions shows significant, dramatic improvement. The stem cells are known to circulate and continue the healing process for up to six months. It's too soon to know the full effect and final outcome of the stem cell transfusions, but the initial results are very good and very exciting.

One note: the stem cells transfusion is step four, and is likely not to be effective without the earlier steps in the protocol. Please don't jump into stem cell therapy without hearing what Dr. Cheney has to say about it.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0902c&L=co-cure&T=0&F=&S=&P=847

In order to read the entire newsletter like the one below on the Disabled, go to the link below. You can also subscribe to this newsletter right there if you wish:

http://www.prohealth.com/em/EM031109C/index.cfm 

Disabled Invited to Speak Up

The National Council on Disability doesn't seem to be aware of (or is ignoring) those of us who are chronically ill, unable to work, and not able to benefit from any back-to-work programs. What many of us need, sadly, is support; financial (SSDI, SSD) and community (assistance with shopping, errands, etc.).

Perhaps this is a good place to point out the misunderstandings and prejudices we face, and explain that we are dealing with very debilitating symptoms, often tied to objective markers, that should put finding the cause and cures of our diseases on the national agenda. [See “National Council on Disability Invites Public Comment” – by mail, fax, e-mail, toll free call line, or attendance at DC Meeting March 30 - Apr 1”] – MZ
____
Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

The American Pain Foundation

Subscribe so that you can receive this newsletter for stories like these and many more:

FDA Approves Local Therapy for Knee Osteoarthritis
The FDA has approved a single-injection version of intra-articular hylan G-F 20 (Synvisc-One) for relieving osteoarthritis knee pain.

GOOD NEWS—National Pain Care Policy Act Approved by Committee!
Our voices are being heard! The U.S. House of Representative’s Energy and Commerce Committee approved the National Pain Care Policy Act of 2009 (H.R. 756). The legislation will now move to the full House for consideration and then travel to the U.S. Senate! Read press release>>

http://action.painfoundation.org/site/MessageViewer?em_id=9041.0&printer_friendly=1

Fibromyalgia and Lipomas

http://chronicfatigue.about.com/b/2009/03/09/lumps-bumps-fibromyalgia-lipomas.htm 

Check out all the info at the About.com site. From this article you can subscribe to Adrienne's (the wonderful guide) very regular e-newsletters.

http://salsa.democracyinaction.org/o/1144/blastContent.jsp?email_blast_KEY=1133131

Nancy Henson