chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids

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Book Resources

Recovering from Chronic Fatigue Syndrome:
A Guide to Self-Empowerment by William Collinge. Click here for the free and updated online edition.

Para la version en Espanol: Recuperarse del Síndrome de Fatiga Crónica. Translated by Cathy Van Riel for translation of this book so it may now reach the Spanish-speaking world. Click here for the Spanish version.

Florida Senator's Offices

Senator Bill Nelson

Click here for Constituent casework information.

Senator Nelson’s office can help if you have a problem dealing with a federal agency, including, but not limited to Medicare, Social Security, veterans’ benefits and travel visas. To effectively and efficiently work on your request, complete and sign the consent for release of information form, provide a detailed account of the problem and describe any actions already taken. Include copies of all documentation that support your claim or may be helpful, such as letters to and from agencies as well as medical or other forms. Mail or fax all materials to Senator Nelson’s Orlando office. If your problem is life-threatening, call (407) 872-7161 or (888) 671-4091 or fax a completed consent form to 407-872-7165 during business hours (Monday-Friday; 8:00am-5:00pm).

Annonces Wancom
www.vicodur.com
Your new helth portal!
Promagnetin
Relieve yourself from pain!

Senator Mel Martinez

Click here for Constituent Case Work information.

Senator Martinez' office can help you with issues with a federal agency. He has offices in several parts of the state. Click here to check an office in your area.

Governmental Resources

Federal

www.cdc.gov - The Centers for Disease Control and Prevention

To go to the CDC’s CFS SPARK campaign web site, click here

Social Security Online- Main web site.

Search for your local Social Security Office

Quick tip:

The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.

Social Security Disability Insurance pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes.

Supplemental Security Income pays benefits based on financial need.


When you apply for either program, we will collect medical and other information from you and make a decision about whether or not you meet Social Security's definition of disability.

Use the Benefits Eligibility Screening Tool to find out which programs may be able to pay you benefits.

 

Medicare Web Site Information - Department of

Health and Human Services.

Medicare Prescription Drug Plans by State for 2008

 

If you are having a problem with a Federal Agency you can ask for assistance from your Senator. 

Click here for the contact list of all U.S. Senators

Please note the following: In order to find out how long your Senator remains in office please read below:

Class - Article I, section 3 of the Constitution requires the Senate to be divided into three (3) classes for purposes of elections. Senators are elected to six-year (6)terms, and every two (2)years the members of one class - approximately one-third 1/3) of the Senators - face election or reelection. Terms for Senators in Class I expire in 2013, Class II in 2009, and Class III in 2011.

 

Florida State

Cash & Counseling

New program now available in several states including Florida, based on a research grant study provided by the Robert Wood Johnson Foundation. The program entails the expansion of a proven model of consumer-directed supportive services to more states, allowing thousands more older adults and people with disabilities to have choice and control over the care they receive. UNFORTUNATELY THIS PROGRAM IS NOT AVAILABLE FOR INDIVIDUALS WITH NEUROENDOCRINEIMMUNE DISORDERS, BUT IT COULD BE A MODEL TO BE APPLIED IN OUR COMMUNITY.

Clicke here for the program information in Florida

Program Overview

The “Cash & Counseling Model” Vision Statement

 

The Cash & Counseling service model is a form of consumer-direction or self-direction intended to empower individuals to make choices and take control of the community support services that they receive. The goal of the model is to enhance their ability to live the life they wish to in the community. This vision evolved from a tested model which yielded very positive results.  Cash & Counseling seeks to create a new model through the inclusion of principles that go beyond what is already possible.  The following principles are essential to the Cash & Counseling model.

  • Cash & Counseling reflects a belief that individuals, when given the opportunity to choose the services they will receive and to direct some (or all) of them, will exercise their choice in ways that maximize their quality of life.
  • Cash & Counseling is one option among several service delivery models but it should be available for all participants that choose it.
  • Because participation in Cash & Counseling is voluntary, there should be a seamless process for moving between this option and the traditional system.
  • Consumer-direction is not used as a vehicle for reducing benefits to recipients.
  • Cash & Counseling includes participant-centered-planning to ensure that the participant is making personal choices for the spending of the budget based on his or her own goals.
  • Cash & Counseling requires a flexible individualized budget that the participant may spend on services that assist the individual to meet his/her community support needs and enhance his/her ability to live in the community.
    • The participant may use the individualized budget to choose and directly hire workers to provide the services.
    • The participant may use the individualized budget to purchase goods, supplies or items to meet community support needs.
    • A flexible budget means the participant has significant choice in the allocation of their funds between hiring workers and making other purchases.
  • Cash & Counseling allows participants to select a representative to help them with making decisions and managing their services.
  • Cash & Counseling provides a system of supports to assist the participant in developing and managing his/her spending plan; fulfill the responsibilities of an employer, including managing payroll for workers he/she hires directly; and obtain and pay for other services and goods.
  • Cash & Counseling obtains feedback from participants, representatives, and family members (when appropriate) as well as data from support service providers to continuously improve the program.

 

Ideally the fully flexible budget would allow the participant to hire legally responsible relatives, purchase goods and services from vendors without Medicaid provider agreements, and receive some part of the budget in cash. To read the complete vision statement go to or type the following link on your web browser

http://www.cashandcounseling.org/about/index_html

Links For Other Resources

Patient Assistance Program - Partnership for Prescription Assistance is the web site where patients, caregivers, and prescribers can find the information, forms that can be filed electronically and the list of available prescription drugs under the financial assistance program for individuals who don't have health insurance or receive any or limited assistance from the government.

A Health Handbook for Women with Disabilities from the Hisperian Foundation - A non-profit publisher of books and educational materials that help people take the lead in their own health care and organize to improve health conditions in their communities. Simply written, heavily illustrated, and developed in collaboration with groups around the world, our books contain a wealth of life-saving information on diagnosing and treating a broad range of health problems.


CFIDS Report - News and Commentary for the CFS community- Craig Maupin is the editor of a very informative web site. His four part series depicting the inner works of the DHHS, CDC, NIH and their relationship to CFS is excellent. His latest interview was with Dr. Vivian Pinn, head of the Office of Research on Women's Health (ORWH) at the National Institutes of Health (NIH). The last article on this series is The NIH and CFS - Advocate's Concerns - Advocate's Concerns about the response to CFS have varied from low funding to alleged bias. Part 4 of the series looks at some of the history behind the concerns of the CFS community. This is required reading if you are CFS patient advocate.

Dr. David S. Bell - Well known CFS physician, former Chairman of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).

Social Security Disability Coalition - Web site outlining Social Security much needed reform. A good source of information if you are seeking disability benefits under Social Security.

The New York State CFIDS/FMS Association - Rome, New York - We want to welcome Will Fiacco and the new NEIDs organization that he and other patient advocates have established in the past few months in the state of New York.  PANDORA is looking forward to collaborating with Will and members of his team in issues that are important to our community. If you live in the New York area please send Will an e-mail congratulating him and lending your voice so he and others can create awareness to the crucial issues affecting our community. 

http://www.nycfids.org/page/page/6726310.htm

Our CFS/FM World, Inc. -Chino Valley, Arizona, U.S. - They are a nonprofit organization maintained by sufferers of Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome. Our Mission is to improve the quality of life for fellow sufferers, while increasing public, governmental and medical awareness of these diseases. We are grateful to them for supporting our advocacy efforts in Florida and nationwide.

The De Paul University, Chronic Illness Initiative program needs our support. Please give generously and earmark your financial donation for CFS, FM, GWS, MCS, Lyme Disease, Lupus or any other related illness of your choice.

 

CFS/ME/FM PROFESSIONAL ORGANIZATIONS

International Association for Chronic Fatigue Syndrome

Medical professional association dedicated to foster research and treatments for chronic fatigue syndrome, fibromyalgia, gulf war syndrome and related illnesses. Current President is Dr. Nancy Klimas. P.A.N.D.O.R.A. and the CDC sponsored their 2007 international conference in Fort Lauderdale, Florida and P.A.N.D.O.R.A. was also the host organization. Researchers and physicians from 21 countries attended and presented at this outstanding conference. advocates from the U.S. and from other countries also attended the patient conference and participated in the Advocates Extraordinaire!© Advocacy and Leadership training sponsored by Purdue Pharma, Marc Iverson, Pro-Health,Inc, the HHV-6 Foundation, BioEnergy Labs, Frankel and Newfield, The Lanford Life-Lyme Foundation and many more!

Click here for complete ongoing updated post-information on this great event It is being touted as one of the best conference the CFS community has ever had and the largest one for the IACFS and for P.A.N.D.O.R.A. You better be ready for the next one!

BLOGGERS

Agent for Change is the blog of the founder of P.A.N.D.O.R.A.- Marly Silverman. She will share her personal insight on issues that affect the CFS-ME, FM, GWI, and MCS and related illnesses community.

Check the blog of Craig J. Phillips, a traumatic brain injury (TBI) survivor who despite all odds against him has accomplished an incredible journey. Phillips's writings demonstrate a strong spiritual connection to G-d. His personal experiences are translated to his writings and to his purpose of leading a fulfilling and thriving life.

You have to check the new web site of ChronicBabe.com

Jennifer Prokopy is the brains behind the web site and her blog. At PANDORA, we are all CFS/FibroBabes!  Jenny has one of the most amazing dispositions towards life and towards her new career. You have to read one of her latest articles that was posted on Young People For...  It is titled "One Woman's negativity is another woman's empowerment". Jenny's has found a very creative way to re-invent herself and to encourage others to do the same when faced with a life long invisible, and so far without a cure type of illness - Fibromyalgia.

Sabrina Johnson, a P.A.N.D.O.R.A. Board Member & advocate of Fibromyalgia has updated her web-site www.fibrocop.wordpress.com.

Check it out for: General information, national & international advocacy activities, events, post articles & notices, updates on international FM awareness, start a conversation or post your motivational thoughts.

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