Bulletin Board Notices

This space is provided at no cost to individuals or groups who conduct nonprofit or volunteer activities for the CFIDS community and for those who provide resources of interest to our members. The following posted items are not subject to review, and the Solve ME/CFS Initiative assumes no responsibility for content. Because all Web sites do not share the Association’s commitment to privacy please make sure that you investigate all the links listed below before joining any groups and before you give out any personal information.

“Choice for Change: Reflecting More of Him”
By Anita Wheatley, a pastor’s wife, blogger, writer, speaker, and CFS/Fibromyalgia sufferer for 19 years.

“Have you ever wanted somebody to rescue you? Someone to understand the pain embedded deep within the surface of your soul? Someone to recognize the emotions tumbling within you are not part of some sitcom to laugh at?” As you journey with the author through her life’s trials, you will embark upon a land full of health issues and her quest to find answers. With no doctor at the helm, she continued her search for a diagnosis. Although frustrating and painful, she discovered that only by His guidance can we find strength and wisdom to undertake our daily tasks. Learn from her how to persevere during difficult times by enlisting biblical principles.

The book is available through her blog at http://www.twokindredhearts.blogspot.com/, Amazon.com, Barnes and Noble, and from WestBow Press (a Division of Thomas Nelson). She, and her book, will also be available at the Women of Faith event in Anaheim, CA in September and San Antonio, TX in October.

The full text of the FIRST edition of Chronic Fatigue Syndrome: A Treatment Guide by Erica Verrillo and Lauren Gellman (published in 1998 by St. Martin’s Press) is now available for free on http://cfstreatment.blogspot.com/. The book can be translated into any language using the translate bar.

The Missing Room,
by Brian Jarman, a writer, journalist and lecturer who’s suffered from ME for 25 years.

The missing room refers to a dark secret place in the heart of the old Welsh farmhouse where he grew up, and where he returns to try to recover and pick up the pieces. It reveals letters which suggest the death of his parents was not as straightforward as he was led to believe. Lloyd now has three mysteries to solve: his illness, the death of his parents, and the true meaning of The Missing Room. Between every line is his own missing room – the void his illness has left in his life.

‘A Beginner’s Guide to ME/CFS’
By Nancy Blake BA CQSW

‘The most dangerous ‘false illness beliefs’ about ME/CFS are that it is a psychiatric problem, and that exercise will help. ‘A Beginner’s Guide to ME/CFS’ is an attractive, easy-to read guide for anyone who suffers from this condition, by whatever name. The author is a psychotherapist who has made significant recovery from ME over the past 25 years, and ascribes this largely to ruthless conservation of energy. She knows that you want to get back to normal life, and your work, as soon as possible, and suggests ways to combine every possible energy-saving strategy and device in order to manage your life and leave some energy to spare for your body to do whatever it needs to do to overcome this disorder. CBT and GET have absolutely nothing to contribute to this effort; calling the imposition of extra exertion a ‘treatment’ is completely illogical and counterproductive. What may help is following Les Simpson’s suggestions for improving blood flow, and these can be an extra weapon in your armoury, as you ‘fight ME by not fighting’. The book provides a list of helpful websites, and an extensive list of references to recent medical research, as well as insight into the controversies and the statistical manipulations of the psychiatric lobby.’

Breaking Eggs: Finding New Meaning with Chronic Illness The book is available on Amazon in paperback and Kindle format, and on Barnes and Noble in paperback and Nook. It can also be ordered by your local bookstore.

About the book:
Breaking Eggs: Finding New Meaning with Chronic Illness, is a spirit-filled and practical guide for anyone dealing with chronic illness. The author has lived with rheumatoid arthritis for 30 years, and her own story and the experiences of people with other conditions, form the scaffolding for her teachings and wisdom. Her lessons come easily, through the heart as much as the head.

Breaking Eggs addresses a variety of psychological, mental, spiritual, and physical issues. As it helps readers create healthy relationships with their bodies, heal their stories, expand their beliefs, and embrace hope, it becomes a guiding hand through the darkness of chronic illness.

Whether the reader is a person with chronic illness or a treatment provider, Breaking Eggs should find a special place on their bookshelf. For a family member or friend of someone with chronic illness, it will provide them with understanding and ways to provide useful support.

About the author:
Lucia Amsden has a Masters in Social Work, and practiced therapy for 20 years. She has written extensively about chronic illness and spiritual psychology and her book, Heartlines: Daily Wisdom for Your Spiritual Journey, is in its second printing. She lives in rural New Mexico with her husband, Tim. You may contact her through her website at newmeaning.info.

Suzette Bishop’s collection of poetry, Horse-Minded, investigates the many permutations of place, real and imagined, inhabited in the present or past, escaped to during illness, specifically, Chronic Fatigue Syndrome. Poems suggests some of the ways to travel to these places via the imagination or on horseback or on an imaginary horseback ride. Too, the book’s title suggests a way of thinking that allows you to endure life’s obstacles, a kind of horse sense. The book can be ordered through amazon, and more information is available at: http://www.readcwbooks.com/bishop.html

Would you like to participant in a CFS/ME and Fibromyalgia PhD Project?
PhD student Pamela McKay, who is a staff nurse working at a hospital in Scotland, is currently working on a study with the University of the West of Scotland. The study has secured ethical approval from the University and Pamela has been awarded a scholarship by the Florence Nightingale Foundation in support of her work. The studies main aim is to explore and analyse similarities between the symptoms associated with CFS/ME and FM. She hopes this will help to “establish am in depth understanding of the impact these symptoms have on patients”.

The study involves logging on to Pamela McKay’s website, creating an account and then answering questions relating to the symptoms experienced.

If you would be interested in participating visit: www.cfsmefibromy.co.uk Or email cfsmefibromy.study@gmail.com for any additional information.

New Chronic Fatigue Clinical Trial ~ Open enrollment
Immune System and Chronic Fatigue Syndrome (CFS) Specialist, Dr. Jon Kaiser, is looking for 20 patients with significant CFS symptoms to help him continue testing a new nutrient-drug hybrid treatment that has already shown great promise in a significant number of CFS patients.

The treatment combines a low dosage of a currently available medication with a potent nutrient-antioxidant cocktail that boosts immune function to provide CFS patients with a healthy and balanced increase in their energy level. The trial will last for one month. The office visits and the nutritional supplement are provided free of charge. There will also be an opportunity to continue this treatment beyond one month, with your own Dr., if you wish to continue. The patient must be present for the initial enrollment appointment; other appointments can be done by phone. Dr. Kaiser’s office is located 30 minutes north of San Francisco in Mill Valley.

Conditions which may exclude a person from this trial are: significant fibromyalgia, a history of heart disease, uncontrolled high blood pressure, major depression, or ulcer disease.

For more information or to enroll in the trial, please email Anne Lahaderne at a.lahaderne@mac.com or call her at (415) 381-7655. Thank you for your consideration.

“My Battle with Chronic Fatigue Syndrome” by Beckie Butcher
Ms. Butcher shares her intense and emotional journey of how the autoimmune disease chronic fatigue syndrome impacted her life from her first symptoms to the progress of her treatment and physical, spiritual and emotional recovery.

By sharing with others, she hopes to inspire others to seek help so they may lead better lives as well. She wants them to know there is hope.

Learn more information about the book at http://bookstore.iuniverse.com/products/SKU-000547625/My-Battle-with-Chronic-Fatigue-Syndrome.aspx

Co-pay assistance for underinsured
Help raise awareness about co-payment assistance. The HealthWell Foundation provides financial assistance to underinsured individuals living with chronic or life-threatening illnesses such as cancer, asthma and autoimmune disorders. HealthWell has helped more than 40,000 patients afford their prescription drug co-payments, premiums and other out-of-pocket health care costs. Learn more at www.healthwellfoundation.org. To receive quarterly news updates, please e-mail support@healthwellfoundation.org.

Support your favorite charity or school whenever you search the Internet.
GoodSearch is an Internet search engine with a simple concept and unique social mission. GoodSearch enables you to help fund any of hundreds of thousands of charities or schools through the simple act of searching the Internet.

The company was founded by a brother and sister team who lost their mom to cancer and wanted to find an easy way for people to support their favorite causes.

It’s simple. You use GoodSearch.com like any other search engine (we’ve partnered with the leading search engine to ensure the best results), but each time you do, money is generated for your favorite cause. Visit http://www.goodsearch.com/ to get started.

What is 2-1-1?
2-1-1 is the human services equivalent of the 9-1-1 emergency line. Staffed by specially trained human servies specialists who are familiar with the myriad of programs and services available in every jurisdiction in your area – this service is designed to put those in crisis in touch quickly and efficiently with the agency that can best meet their needs. Non-profit organizations and federal, state and local government agencies are included in the database and you can access services in your community and statewide.

Food/Drug Interactions
While this Website may help clarify information about food/drug interactions patients are strongly advised to discuss the prescription medications they are taking with their healthcare providers.

Consumers and healthcare professionals seeking reliable information about food/drug interactions can turn to a new Web resource, according to a University of Florida pharmacy educator in natural products. The informative Website http://www.druginteractioncenter.org/houses a comprehensive database of food/drug interactions.

Disability Information
The Massachusetts CFIDS Association has a newly updated disability packet available to the public.  You can download a free copy of “How to Apply for Social Security disability Benefits If You Have Chronic Fatigue Syndrome” from http://www.masscfids.org/ or purchase a hard copy for $12.

I.C.E. — In Case of Emergency
A campaign encouraging people to enter an emergency contact number in their mobile phone’s memory under the heading ICE (In Case of Emergency), allows paramedics or police to be able to contact a designated relative next-of-kin in an emergency situation.

By adopting the ICE advice, your mobile phone will help the rescue services quickly contact a friend or relative – which could be vital in a life or death situation. It only takes a few seconds to do, and it could easily help save your life.

Why not put ICE in your phone now? Simply select a new contact in your phone book, enter the word ‘ICE’ and the number of the person you wish to be contacted.

Copyright 2004 Steven Howard
Steven Howard is a leading marketing consultant, keynote speaker, and author of CORPORATE IMAGE MANAGEMENT, POWERFUL MARKETING MINUTES, ASIAN WORDS OF WISDOM, and MORE Powerful Marketing Minutes. He may be contacted via email at
steven@howard-marketing.com, or via his web site: www.howard-marketing.com.

New Rx assistance
A new Partnership for Prescription Assistance program offers people without prescription drug coverage a single point of access to more than 275 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. To access the Partnership by phone, call 888-477-2669 or visit their Website at https://www.pparx.org/Intro.php.

Free Wheelchair Mission
Distributes wheelchairs free of charge to the physically disabled in greatest need. You can contact FWM at: Mailing address: P.O. Box 513538, Los Angeles, CA 90051-3538
Locally: 714-389-3140
Toll free: 1-800-733-0858.
E-mail:  involve@freewheelchairmission.org
Web address: www.freewheelchairmission.org.