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FMS/CFIDS Home PageAs we prepare to celebrate National Fibromyalgia Awareness Day, we have good reason to celebrate. The awareness level of the public, the medical community and the media is at an all-time high. However, this increased awareness has also made FM patients the target audience for a multitude of products promising to improve or even “cure” fibromyalgia (FM).
There are some very good products available that can offer at least a degree of symptom relief, however, there are also many questionable products and a few downright scams. As the understanding and recognition of fibromyalgia has grown, hundreds of companies with health-related products have scrambled to market their products to 10 million suffering patients –– desperate to find something that will help them.
A TV ad asked, “Are you a female with fibromyalgia?” It then offered a free copy of an “eye-opening report” and instructed me to call a toll-free phone number or go to their web site.
With the red lights of my inner “scam-alert radar” flashing, I went to the web address. No clue as to what the “report” was about or what product they were selling –– just a form to fill out with my name and address so they could send me the report. Next, using *67 to block my phone number from showing up on caller ID, I called the toll-free number. Once again, I was just asked for my name and address.
Now, I can’t say whether or not this is a scam because I refused to give them my personal information. However, I am automatically suspicious of any company who will not even tell you who they are until they get personal information from you. I do feel fairly certain they are trying to sell something. Their mysterious advertising technique ensures they will have a database full of their target audience –– women in pain, looking for help.
How do you determine which products are worth trying and which are more hype than substance?
Before trying any new product or treatment, look for these warning signs:
[NOTE FROM DOMINIE: Google places some fibro ads on my site. I earn pennies a click, which helps defray expenses for the site. However, I have no control over the ads that go on my site, so just be careful which ones you choose to investigate.]
CURE FOR CFS?
From fibro friend, Bob in NZ -- www.q10formula.org
CELL REJUVENATION FORMULA: Q10 + NADH + PHOSPHATE + MULTIVIT/MIN
STEP 1 :
The 4 supplements are NADH (20mg) and phosphate (come in form of magnesium and potassium phosphate) to be taken with water only first thing after waking up.STEP 2 :
Wait for half an hour then take Q10 (150mg) and a good multivit/min with breakfast or brunch.Within a week or two, you will feel your energy increasing and more important sustainable throughout the day.
Please see the websites below on ATP energy production by a renowned professor of a US University and note the mention of NADH, Q (Q10) and phosphate.
1. http://www.sp.uconn.edu/~terry/images/anim/ETS.html
2. http://www.sp.uconn.edu/~terry/images/anim/ATPmito.html
Buying the supplement phosphate in the form of magnesium and potassium phosphate, Q10 and multivit/min may be easy but NADH can be bought online from an American company with the website: http://www.enadh.com/shop.html
EXPLANATION :
Once the 4 supplements get into the body cells and since our body cells renew monthly, any deficiency due to stress or genetics will be addressed making it possible for increased production of cellular energy namely ATP (adenosine triphosphate) in the cells‘ mitochondria or “powerhouses”. Increasing the energy supply in body cells will enable the ribosomes or “factories” to produce more of the important neurotransmitters such dopomine, serotonin and noradrenalin. When these neurotransmitters production reaches normal capacity, the excitation and inhibition part of the Autonomic Nervous System (ANS) will attain homeostasis or balance and thus the symptoms of deficiency of the neurotransmitters and an imbalanced ANS manifested with symptoms like chronic fatigue, insomnia, anxiety and depression will disappear. The person will come alive and not mere existing anymore due to taking drug medication.ILLUSTRATION :
This can be illustrated by a car that stalls due a flat battery. Replacing the entire battery or filling it with distilled water and recharging it will make the car go again. Similarly a person suffers CFS due to weak “ powerhouses”. Replenishing them with the 4 supplements with the body’s own ability to recharge itself will make the person come alive again. Does that make sense? This is far superior to symptomatic relief provided by drug medication where a person is merely existing. Thus the formula for cell rejuvenation provides a cure!
SEND QUICK EMAIL TO
LAUREN
Hello Dominie:
I thought I would pass along the email address of the Legislative Director
for our Congressman's. lauren.semeniuk@mail.house.com
I hope you get a chance to email Lauren at Congressman Stearns office.
Their office always asks me if how many people have CFS and FM. I have
given them numbers, but getting alot of email about these illnesses will be
beneficial.
Rebecca Artman
Vice President
P.A.N.D.O.R.A., Inc. – Patient Alliance for
Neuroendocrineimmune Disorders Organization for Research & Advocacy
P.
O. Box 362
Middleburg, FL 32050-0362
http://pandoranet.info/
From Marly--
A week ago, I received a gift in the mail. It was a package from Southern Methodist University Press in Dallas, the oldest university press in the state of Texas. This Press publishes significant and enduring works in the areas of ethics and human values, literary fiction, medical humanities, performing arts, Southwest studies, and sports. The package contained the latest book written by Dorothy Wall, Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome.
I immediately begun to read the book and I was hooked! Am I biased when I strongly recommend that every neuroendocrineimmune patient buy this book? Am I biased when I say every neuroendocrineimmune patient, be it CFS or FM, Lyme disease, Gulf War syndrome, or any chronic illness will find Wall’s struggles quite familiar and will be touched by her description? If so, then I am guilty as charged.
I devoured and saved as my own, every word Wall used to describe what it is like to live with CFS. I found myself so deeply immersed in her book that, in so many instances, I felt as if I had taken her place in her own story. One of the hallmarks of a great book on shared life experiences is to make readers feel like the narrator and or identify with the characters in the book. It is so satisfying to read a passage and feel as if it happened to you, and chances are that if you a CFS or (FM) patient, it probably did.
Encounters with the Invisible, will transport you to a world complete with deceit,
power, money wars, isolation, friendship, love, anger, frustration,
inconsistencies, surrender, denial, sickness, motivation, and justice. Wall
describes the death and rebirth of a soul in such a meaningful way that it will
empower you. And you all know I am all about empowerment!
Wall’s outstanding prose proliferates with the delicate, sincere, hurtful, and truthful. Like a beautiful tapestry, her story is woven with outstanding writing, description, and rich details, which the best of literary fiction contains, the books that sell millions of copies worldwide. But, this is NOT fiction! At a time when voyeurism is in and television and radio shows depict "real life" as it happens, with no retakes allowed, it is almost surreal to realize that her personal world is shared and experienced by millions of human souls in the U.S. and around the world. It is such a great feeling to know that you are not alone.
With her prolific vocabulary ( I had to reach for Webster’s Dictionary several times), she is able to describe so powerfully and poignantly the nuances, the shadows, the unreachable light desperately desired, and the darkness that at times will surround neuroendocrineimmune (chronic fatigue syndrome) patients as they struggle to survive.
Ultimately, the message I got from the book is all about empowerment, although Wall’s story is bitter-sweet, an oxymoron attached to an illness that still needs much more empirical scientific research, as Dr. Nancy Klimas eloquently points out in her afterword.
Dr. Klimas makes the case very well when she shares with readers that CFS causes an enormous annual financial economic impact in the United States to the tune of 9.1 billion dollars. If being robbed of your dignity or feeling abandoned by society does not garner attention to our cause; a financial loss that impact our national economy (and ultimately, in some level, affects everyone’s pocketbook) will generate proper attention.
As Dr. Klimas clearly points out in her comments about the book, it is time for us, the patients, to urge Congress to increase research funding by taking advantage of the activism being fueled throughout our community, allowing scientific researchers to move forward and ultimately find the cure for CFS. If this does not motivate us to put pressure on Congress to take a strong stand on the issue, we will have only ourselves to blame. The opportunity is here; we need to take it!
It is time for us as patients to renew our motivation and take ownership of our advocacy movement. I sincerely believe that Encounters With the Invisible will give you the major push that comes with knowledge, that comes with ganas" (Spanish for desire, OR fire in the belly) to participate in advocacy in any way you can. I would like to outline a few ideas on how to do just that.
You can start by reserving a copy of this book today, by either mailing us a check in the amount of $18 or paying for it through Pay Pal at www.pandoranet.info/donations. We chose the number 18 because it means life (chi) in Hebrew, so it is a gift of life! If you attended the Inspiring Hope Through Awareness™ conference on April 29, 2006, you had the opportunity to purchase there and we sold 14 books at that event. If you are a patient of Dr. Nancy Klimas, she will also autograph it for you. Eventually, we hope to have the author herself autograph a few copies too.Let’s make it a bestseller; we have the demographics to accomplish this goal. Let’s show that we have financial and political clout. If you are a CFS patient with the necessary means, buy two or three books and send one to a CFS friend who perhaps cannot afford one. Let’s send an e-mail to every CFS (and fibro, too, as the illness overlaps) friend you have. Show it to your family members, your neighbors, the book clubs at Borders, at Barnes & Noble. Spread the word to your synagogue literary/book clubs, or your church or women’s book club, the Rotary or the Jaycee’s. Go to your local library and ask them for the book. If they don’t have it, insist they acquire a copy for their collection.
If Wall’s book becomes a best seller, then the media will pay attention. Additional media interest in our cause will follow from all over the U.S. and overseas. Let’s make Wall’s name a household name BY MAKING HER BOOK A BESTSELLER.
If we accomplish this dream, it will be the most powerful and gratifying result stemming from this great book! Wall will be able to rest aggressively (literally) and comfortably on her laurels. And you and I, by presenting her powerful message, will make a huge difference in our community of suffering.
May 12, 2006, is Awareness Day for neuroendocrineimmune disorders like chronic fatigue syndrome, fibromyalgia, Gulf War syndrome and multiple chemical sensitivities. If you are able, please join P.A.N.D.O.R.A. (www.pandoranet.info) May 8-9 for Lobby Day in Washington, D.C., with the CFIDS Association (www.cfids.org) and staying an extra day- to May 10- to lobby with P.A.N.D.O.R.A. for the Florida Neuroendocrineimmune Center of Excellence. Make sure you participate in the many events already planned around the country, including those spearheaded by the National Fibromyalgia Association (NFA) (www.fmaware.org ), and other regional, state, and local organizations. Check Co-Cure for dates and announcements of these events. Perhaps we can break an Awareness Day record for the "Guinness Book of Records" – The most events ever held for a particular Awareness Day!
Remember, you and me together, united; we are a powerhouse, incredibly strong. We can make a significant difference. Remember Advocacy works!
Marly C. Silverman
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