Resource Library
Books and Videos
- Details
- Last Updated: 21 January 2016 21 January 2016
Annotated booklists
Books about Chronic Fatigue Syndrome and Fibromyalgia
Books about Chronic Fatigue Syndrome
Books about Pain and Pain Management
The patient's experience
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
Love and Fatigue in America by Roger King
The Sound of a Wild Snail Eating by Elisabeth Tova Bailey
We Aren’t In Kansas Anymore: Chronic Fatigue Syndrome & the Politics of Disease by Rik Carlson
Other books of interest
Cure Unknown: Inside the Lyme Disease Epidemic by Pamela Weintraub
How Doctors Think by Jerome Groopman, M.D.
Full Catastrophe Living—Using the Wisdom of your Body and Mind to Face Stress, Pain and Illness by Jon Kabat-Zinn Ph.D.
The Truth About Getting Sick in America by Dr. Tim Johnson
Videos
INVISIBLE video
New England Premiere of I Remember Me video
The Water Bearer
- Details
- Last Updated: 28 February 2009 28 February 2009
A water bearer in India had two large pots, each hung on one end of a pole which he slung across the back of his neck. One of the pots had a crack in it, and while the other pot was perfect and always delivered a full portion of water at the end of the long walk home from the stream to the master's house, the cracked pot arrived only half full.
For a full two years this went on daily, with the water bearer delivering only one and a half pots full of water to his master's house. Of course, the perfect pot was proud of its accomplishments, perfect to the end for which it was made. But the cracked pot was ashamed of its own imperfection, and miserable that it was able to accomplish only half of what it had been made to do.
After two years of what it perceived to be a bitter failure, it spoke to the water bearer one day by the stream. "I am ashamed of myself, and I must apologize to you," it said. "Why?" asked the water bearer. "What are you ashamed of?"
"I have long been able to deliver only half my load, because this crack in my side causes water to leak out all the way back to your master's house," the pot answered. "Because of my flaws, you have to do all of this work, and you don't get full value from your efforts."
The water bearer felt sorry for the old cracked pot, and in his compassion and wisdom said, "As we return to the master's house today, I want you to notice something: the beautiful flowers along the way."
Indeed, as they went up the hill, the old cracked pot took notice of how the sun warmed scores of beautiful wildflowers on the side of the path, and this vision cheered it some. But at the end of the trail, the pot still felt bad about its "disability"—because once again it had leaked out half its load—and thus once again it apologized to the water bearer for its perceived failings.
The water bearer said to the pot, "Did you happen to notice that there were flowers only on your side of the path, and not on the other pot's side? That's because I have always known about your flaw, and I took advantage of it. I planted flower seeds on your side of the path, and every day while we have walked back from the stream, you've watered them. For two years I have been able to pick these beautiful flowers to decorate my master's table. If you were not just as you are, he would not have such beauty to grace his house."
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Each of us has our own unique flaws; we are all, in some way, “cracked pots.” But, if we will recognize this and the potential benefits of those flaws, we will see that we can “grace the beauty of the master’s house.”
Don’t be afraid of your flaws or limitations. Acknowledge them and how they may confer advantages you may never have dreamed of in life’s pathway. Go out boldly, knowing that in our weaknesses we often discover our strengths as well.
The Massachusetts ME/CFS & FM Disability Handbook
- Details
- Last Updated: 05 November 2023 05 November 2023
The information in this booklet is invaluable to those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) who cannot work and are seeking financial stability. The Table of Contents is displayed below.
This booklet has been revised in 2021. However, some detailed information such as the income and asset eligibility for SSI change periodically. The revised booklet contains the new 2014 Social Security CFS Ruling which is now used for evaluating ME/CFS disability cases. The booklet also contains information on the 2012 Social Security Fibromyalgia Ruling. Note: Social Security Administration still uses the term "CFS" rather than ME/CFS.
Accessing this booklet requires Adobe Reader, which is available as a free download. Get Adobe Reader
This booklet is available free from the website. This document may be downloaded or reproduced without permission as long as copyright notice and
attribution is made to the Massachusetts ME/CFS & FM Association, that no profits are generated from its distribution, and that this statement is also included. This document may not be distributed or sold by any organization, incorporated or unincorporated, other than the Massachusetts ME/CFS & FM Association.
If you find this booklet helpful, please consider becoming a member or making a donation to support this work.
You may display/download the entire booklet (110 pp.)
or
Display/download by sections by using the links below.
Table of Contents
Introduction
- Eligibility for Social Security Disability Programs
- Disability Eligibility Standard for SSDI and SSI
- Financial Eligibility Standards for SSDI
- Financial Eligibility Standards for SSI
- Emergency Aid to the Elderly, Disabled & Children Program (EAEDC)
- Food Stamps and Fuel Assistance
How to Apply for Social Security Benefits if You Have Chronic Fatigue Syndrome
I. The Application Process
II. When to Obtain a Lawyer
III. When to Apply for Disability
IV. Your Doctors' Letters to Social Security
V. Your Description of the Disabling Effects of Your Illness
VI. Contacting your Congressman about your Social Security DisabilityApplication
Appendix I: The 2014 Social Security Ruling for the Evaluation of CFS Disability Claims
Appendix II: Obtaining a CFS Diagnosis Using the 1994 CDC CFS Definition
Appendix III: Documenting Fibromyalgia to Social Security
Appendix IV: Helping Your Doctor Document Your Illness to Social Security (and to Other Disability Carriers)
A. Memo from a disability lawyer.; Recommended documentation of CFS Disability Claim to be Submitted to Social Security and/or for Private/Employer Disability
B. Checklist of ME/CFS Symptoms
C. Some Tests to be Conducted to Help Determine Objectivity of CFS and/or Disabling Symptoms
D. Excerpts from previous Social Security Administration Documents which provide guidelines for documenting CFS disability.
E. Incapacity Checklist
F. Sample Doctor's Letters Documenting CFS Disability
G. Helping Your Doctor Prepare Your Medical Report
Appendix V: How to Prepare for an Administrative Law Judge Hearing (3rd Stage)
- 3 Memos from a disability lawyer.
- Updated Specific Suggestions on Preparing for the Social Security Hearing
- Necessary Elements in Preparation for Social Security Appeal Hearing of a CFS Disability Case and Further Suggestions
Appendix VI: The Use of a Diagnosis of Depression or Other Mental Impairments in a CFS Social Security Application
Introduction
A. The "Legal Services" Position: The positive use of secondary depression and mental impairment in a disability application.
- Problems which may develop between CFS patients and their attorneys regarding documentation or submission of mental impairment, diagnoses.
- Issues of cognitive dysfunction and neuropsychological testing
B. The case for avoiding, if possible, the use of depression or other mental impairment diagnosis a CFS disability application.
Appendix VII: Landmark Federal Court Decision
- Establishes Right of Persons Diagnosed with and Disabled by CFS to Obtain Social Security Benefits.
- Additional Federal Court decisions granting CFS and fibromyalgia disability claims.
Appendix VIII: Disability Case Reviews
Appendix IX: Other Disability Insurance Programs
I. Disability Insurance through Your Employer
II. Disability Retirement Benefits for State Employees and Teachers (Massachusetts)
Addendum I: Plans for Achieving Self-Support While Receiving Supplemental Security Income
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Subcategories
Books & videos 7
Videos 3
Pain 1
Advocacy 39
Congress2016 1
Documents used in Congress visits March 2016
Disability 23
Coping 27
Humor 1
Research 5
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.