For Your Information

CFIDS/FMS News

Chronic Fatigue and Fibromyalgia Support Group of South West Florida

May/June 2005

Meeting Third Saturday of the month, 10:30AM to Noon at the Cape Coral Hospital,

In the New Café, 636 Del Prado Boulevard, Cape Coral.

May 21^st - Round table discussion lead by a licensed counselor

June 18^th - Round table discussion lead by a licensed counselor

Handouts on Chronic Fatigue and Fibromyalgia are available at every meeting. A therapist leads round table discussion. Information and support is shared by all. Perfume and scent free due to sensitivities. Programs announced as available. Newsletters are published every other month.

If you received this newsletter in the mail it means we do not have your e-mail address!

Roxy Barber

223 Utah Ave.

Fort Myers, FL 33905

Remember: "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, `I will try again tomorrow.` " Mary Anne Radmacher

Letter from the Editor

Trying out a new treatment this month, I will let you all know how it is going. If any of you are trying something new to help yourselves please write or call and let us know your experiences, we can learn from each other.

Here I must insert our "Disclaimer" -- we are a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. -- What I experience and experiment with may be totally wrong for someone else and vice/versa.

My newest experiment is rather invasive, radio frequency lesioning. I have already had the diagnostic test, which involves a nerve block with anesthesia to see if the nerves in my back are causing a lot of my odd pain, and it appears a lot is generated by my spine. Whether or not taking away the pain will help my body to heal the rest of the symptoms is yet to be seen. What sold me was the doctor saying "--and lets get you off those mind numbing drugs." Seductive proposition. I hope I didn`t fall for a good sales pitch.

Bonnie is trying peptide treatment with very good results, says she is a weekend warrior with tired muscles like the old days, hope she lets us know more about that. It is a series of 10-12 shots and is expensive but she has been able to cut back on her meds. Connie writes that she has had luck with the supplement MSM for pain, (I swear by it too). She says she was all set to join a study and test a new medication, but decided that since it may not be available again for a while after the tests and the side effects are not yet know that she did not want to risk it. Lets hear more from US!

Am I making desperate moves to get well? Or am I just moving forward in the many steps we all take to feel better? It is hard to judge the difference, but as one friend put it "You can't not try it, or you will forever wonder." I go in with open eyes and have researched as much as I know how. Any one have a better, or different way to make these choices? These are hard decisions and all advice and experience is helpful, whether we adopt it or not. Share.

Love and hope for all

Roxy Barber 693-7252 Webeinflorida@juno.com

Local News

Kay Ferguson writes to all to say "I pray for all of you and know that with the help of the CFIDS Assoc. and the FMS Network, there will become better and more research. Just think--we are the pioneers of these illnesses and we can show others that we are not quitters but winners. We will endure." She is sending e-cards and if anyone would like to receive them please let me know and I will pass them on to you. I have no way to share them otherwise.

Do it Your Way

From www.Co-Cure.com Sun, 15 May 2005

Video Games may help Stroke Victims, reads a headline in the associated press. It seems that stroke victims past the likely recovery period of one year, have found improvement in walking from playing virtual reality games like diving and snowboarding. (National Institute of Neurological Disorders and Stroke).

Simone Harris submitted this article and comments, "the way our weird illness affects us .... at times, we can find an equally weird way out where certain symptoms apply." I can only cite my own experiences on this, but the brain is an interesting piece of equipment that does not always read the rule books and has a mind of its own! For example, when I was at my very worst and could no longer read or write (or speak).......I am being VERY serious here, I found my way back through reading a book that was over 200 years old. For some inexplicable reason I found I had no problems with all that odd use of lettering and I could read and narrate quite fluently, even though at that time, modern print could have been in Chinese as far as I was concerned. When it comes to computer games, I played golf with my husband who is a keen golfer. I have never played the real game in my life. Time after time I would beat my husband at the computerized version of the game. Oddly enough, the way he played on screen was exactly how he played out on the golf course. Driving was great, putting needed a little help. I taught him how to REALLY be aware of the lay of the putting green. Sure enough, his putting improved.....but not just on screen. My husband is 75 years old.

Why this is of equal interest to us is that at the end of the day what goes on 'upstairs' is all down to creating new networks to access and utilize back-up brain cells. I firmly believe that we can regain functions that we feared we had lost forever simply by doing things a different way.

Glutathione deficiency implicated in autism, cystic fibrosis and CFS

From www.Co-Cure.com Sat, 16 Apr 2005

Rich Van Konynenburg, Ph.D. has been emphasizing the importance of glutathione depletion in CFS since Dr. Paul Cheney first reported it. Now at the University of Arkansas researchers have found that kids with autism have the reduced form of glutathione depleted by about 80%. They have suggested autism occurs when there is a combination of a certain genetic makeup and an environmental insult that interacts with it. This environmental insult may be mercury from vaccines. The body uses glutathione to rid itself of mercury. In children who are less able to maintain their glutathione levels for genetic reasons, mercury may be more toxic.

At the same time there has been a breakthrough in cystic fibrosis research that also involves glutathione (by Valerie Hudson at BYU in Utah). In cystic fibrosis, it appears that cells have difficulty in exporting glutathione.

Dr. Van Konynenburg states "I think that this is very exciting. I think that there could very well turn out to be many parallels between autism and CFS. The difference may be that autism occurs when glutathione depletion occurs early in life, while CFS occurs later in life, after the brain has had a chance to develop." Both groups have highly motivated parents to push research. "We all know how difficult it has been to get scientific interest and funding for research into CFS. I think we are now about to benefit from spin-offs from research into these other diseases."

News from Dr. Paul Cheney

A new article based on transcripts of visits with Dr. Paul Cheney is available at www.virtualhometown.com/dfwcfids/medical/cheney/heart04.part1a.htm (If that link doesn't work for you, just go to www.virtualhometown.com/dfwcfids , click on the Cheney section, and click on "CFS & Cardiac Issues".

The article is long and many topics are mentioned, some briefly, others in great detail. These include: Compensated Idiopathic Cardiomyopathy, heart failure, blood pressure, heart rate, arrhythmia, Mitral Valve Prolapse, chest pain; The Marshall Protocol and Benicar; Dr. Martin Pall (nitric oxide, superoxide & peroxynitrite); Dr. Les Simpson (Red Blood Cell deformation); FM, MCS, MS, GWS, Coronary Artery Disease & statin drugs, cholesterol (HDL & LDL); disability; compensatory hypothyroidism; sensitivity to light, noise, cold, heat, pain & electromagnetic radiation; liver/gut issues; cognitive problems; psychiatric issues; neuroendorine problems; ANS problems; mitochondria, mercury, viruses and bacteria, mold, toxins; glutathione, selenium, idebenone, CoQ10, Klonopin, Provigil, Isoprinosine (Imunovir); uric acid, SED rate

Medicare Prescription Coverage 2006

From: www.Co-Cure.com Kaiser Family Foundation website at www.kff.org Wed, 4 May 2005

The Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (MMA) (P.L.108-173) gives elderly and disabled people on Medicare access to two or more plans that contract with Medicare to provide prescription drug plans (PDPs) beginning in 2006. Until then, it provides temporary help through Medicare-approved drug discount cards and transitional assistance for low-income beneficiaries.

You can either enroll in new prescription drug plans (PDPs) and get all other Medicare benefits from the traditional fee-for-service (FFS) program, or you can enroll in Medicare Advantage (MA) plans, such as HMOs or regional PPOs, that cover all Medicare benefits, including drugs. There will be an additional monthly premium. The new plans will negotiate with drug companies, something Medicare is prohibited from doing. Check out your plans carefully, they will differ from carrier to carrier and differ as to region of the country.

Medicare will provide premium and cost-sharing subsidies to assist low-income beneficiaries. Apply for low-income assistance at local Social Security or state Medicaid offices.

Enrollment is voluntary, but if you delay enrollment after initial eligibility you will pay a lifetime premium penalty equal to 1% of the base premium for each month you delay enrollment.

For more information visit the Kaiser Foundation web site above or

http://www.co-cure.org/medicare.pdf

Laughter is the Best Medicine

When I'm feeling down, I like to whistle. It makes the neighbor's dog run to the end of his chain and gag himself.

If you can't be kind, at least have the decency to be vague.

A penny saved is a government oversight.

The real art of conversation is not only to say the right thing at the right time, but also to leave unsaid the wrong thing at the tempting moment.

The older you get, the tougher it is to lose weight, because by then your body and your fat have gotten to be really good friends.

The easiest way to find something lost around the house is to buy a replacement.

When you put the 2 words "The" and "IRS" together it spells "Theirs."

The sole purpose of a child's middle name is so he can tell when he's really in trouble.

There's always a lot to be thankful for if you take time to look for it. For example I am sitting here thinking how nice it is that wrinkles don't hurt.

Remedyfind

From: CFIDS Link http://www.cfids.org/cfidslink/2005/remedyfind.asp

Remedyfind ( www.remedyfind.com ) is an on-line community sharing information about treatments that have worked, and those that didn't . Remedyfind emcompases over 50 conditions, although created by a CFIDS sufferer, Brett Hodges. "When I was first ill, I tried a multitude of different treatments - drugs, diets, counseling, alternative medicine and bodywork techniques. Some helped more than others. One of the most useful tools I found was keeping a journal of my reactions" and rating each one. "When I thought more about it, I realized that this might be useful information for others, too. That was the inspiration for creating the Remedyfind site," Brett recalls.

The site is not owned, sponsored or supported by any industry organizations and Remedyfind fiercely protects the privacy of its members, including patients and health care providers. On the site you can find ratings of the effectiveness of prescription drugs, over-the-counter products, self-care therapies, supplements and procedures. There are also links to detailed descriptions of the different products or approaches.

CFS/FM Free Book Giveaway

From: www.Co-Cure.com Mon, 2 May 2005

Mark Your Calendar!

**June 6th - Free Health Book Giveaway**

"Knowledge is power." The CF-Alliance believes in empowering the chronically ill patient with knowledge and information in order to make the most beneficial health decisions. On Monday, June 6, 2005, the CF-Alliance website will be having another 'Members-Only Free Book Giveaway'. There will be over 400 books given away worldwide!

-On June 6, 2005, the free health books will be listed on the CFA information website

(http://groups.yahoo.com/group/CFAlliance). -All books are new and health-related.

-You MUST be a CF-Alliance website member to participate. To join visit: http://groups.yahoo.com/group/CFAlliance -Books are given on a first come, first serve basis. -Books will be mailed FREE of charge worldwide.

**For more info:

http://cf-alliance.tripod.com/id5.html

**Email: cf_alliance@yahoo.com

**Please mail book donations to: CFA, PO Box 9204,Bardonia NY 10954 USA

Disclaimer

The Chronic Fatigue and Fibromyalgia Syndromes Support Group is a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. This newsletter does not dispense medical advise not is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and will assume no responsibility for any treatment or activity undertaken by readers.

Contact

Bonnie Dewar 239/242-6388

Terry Connor 239/945-1247

I wish to donate the enclosed amount to help with the costs of the Cape Coral CFS/FMS group. Any and all donations are appreciated. $________________________________