Chronic Illness Resources

Chu, Lily, Fuentes, Lynn, Marshall, Olena, Mirin, Art.  Accommodations for ME/CFS College Students (useful in other contexts, too)

Fuentes, Lynn.  The Chronic Illness Initiative
Supporting College Students with Chronic Illness Needs at DePaul University.

Fuentes, Lynn.  Crossing the Bridge
An essay on when to intervene by Lynn Holaday Fuentes.

Fuentes, Lynn. Much to Be Grateful For
The story of a mother’s effort to help her son and a family’s struggle to cope with ME/CFS by Lynn Royster Fuentes.

Bernhard, Toni. When Our Chronically Ill Bodies Say “Rest,” Why Don’t We?

Brownlee, Shannon.
When Patients — Not Doctors — Make Medical Mistakes. The Cost of Assuming Doctors Know Best

Savoie, Hillary.
PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?

Edwards, Laurie
http://www.laurieedwardswriter.com/select-writing/
New Diagnosis Risks ‘It’s All In Your Head’ Response To Illness

Feelings of Vulnerability, Disempowerment, and Discrimination Common in Children with Epilepsy

Sick Magazine – see forum responses

Shifke, Caroline  https://www.huffpost.com/entry/chronic-illness-no-one-knows-whats-wrong_n_5efe1653c5b6ca97091b054a

A sociological critique of alternative medicine: liberation or disempowerment?

Trumzo, Joseph. The best life possible.

Families Living With Chronic Illness and Disability   70.00  copy from google

Relationships:

Changing Relationships, Changing Lives  http://caregiveraction.org/changing-relationships-changing-lives

How a Chronic Illness Can Impact a Relationship http://itsnotjustlyme.com/lyme-can-impact-relationship/

Love, Anger and Guilt: Coping With a Child’s Chronic Illness https://www.nytimes.com/2001/06/26/health/love-anger-and-guilt-coping-with-a-child-s-chronic-illness.html

Maintaining a Healthy Relationship (with someone with mental illness) https://www.nami.org/Find-Support/Family-Members-and-Caregivers/Maintaining-a-Healthy-Relationship

For Providers – Advice for physicians seeing ME/CFS patients

Chronically Capable.  An organization that helps people with chronic illness find flexible work.  https://www.wearecapable.org/

Please forward suggested links to [email protected]

• Alzheimer's Disease and Dementia
• Arthritis
• Asthma
• Cancer
• Cerebral Palsy
  • Cerebral Palsy Treatment
  • Cerebral Palsy Guide
  • What is Cerebral Palsy
• Chronic Obstructive Pulmonary Disease (COPD)
• Chronic Pain
• Crohn's Disease
• Cystic Fibrosis
• Diabetes
• Epilepsy
• Fibromyalgia
• Heart Disease
• HIV/AIDS
• Lupus
• Lung Conditions
  • General
  • Non Tuberculosis Mycobacterial disease
• ME/CFS
  • The Solve ME/CFS Initiative
  • The Open Medicine Foundation
  • #ME Action
  • 
    Source: CDC
    Date:   January 27, 2021
    URL:    https://www.cdc.gov/me-cfs/resources/patient-toolkit.html
    
    * Could You Have ME/CFS?
     https://www.cdc.gov/me-cfs/pdfs/Could-You-Have-MECFS_508.pdf
    * Preparing to Discuss ME/CFS with a Healthcare Provider
     https://www.cdc.gov/me-cfs/pdfs/First-Visit-MECFS_508.pdf
    * On the Day of Your Office Visit for ME/CFS
     https://www.cdc.gov/me-cfs/pdfs/During_Visit_508.pdf
    * After a Healthcare Provider Visit for ME/CFS
     https://www.cdc.gov/me-cfs/pdfs/After-Diagnosis_508.pdf
    * Handout: A Healthcare Visit Checklist for ME/CFS
     https://www.cdc.gov/me-cfs/pdfs/Checklist-for-Visits_508.pdf
    * Current Medications and Supplements List
     https://www.cdc.gov/me-cfs/pdfs/Medications_508.pdf
• Mesothelioma a wealth of information and resources for patients and their families accredited by the HONcode standard for trustworthy health information
• Mood disorders (Bipolar, Cyclothymic, and Depression)
• Multiple sclerosis
• Muscular Dystrophy (MD) ...
• Myasthenia Gravis
• Parkinson's Disease
• Poliomyelitis
• Scleroderma
• Substance Abuse and Mental Health

  • Substance Abuse and Mental Health Services Administration Help Line

  • sobernation.com

  •  It’s Not Too Late: A Workbook for Recovering Addicts

  •  It's Not Too Late: You Can Grow a Bright Future Starting Right Now

• Rheumatoid Arthritis (RA)
• Schizophrenia

Planning and Practical Resources

Spirituality and Growth

Literature and Film

The Children Act with Emma Thompson.  Movie (book by Ian McEwan):  A 17 year old Jehovah’s Witness wants to refuse a life-saving blood transfusion.

Lynn Fuentes. Ph.D.  Author of the Koan of Illness approach.

Jennifer Davis,   Licensed professional counselor.  Integral Coach.  See an interview with Jennifer here.

Amy Stenehjem, MD.  Health Consultant.

Tim Schneider. Health Coach specializing in Nutrition and Mindfulness. Focus on autoimmune issues.  Can also help with social media and video editing.  [email protected]

Live Another Day - Live Another Day was founded with the purpose of providing equal access to life-saving resources. They offer dozens of resources for finding help for mental health and substance use

A Guide for Addressing the Loneliness Epidemic - In May, Surgeon General Dr. Vivek Murthy issued a special report on the public health crisis of loneliness in America.

Royster (Fuentes), Lynn. The Man Behind the Framework

Feldman, Lynne.  Integral Healing

Wilber, Ken   Grace and Grit

Coaching and Healing: A look at connecting the biological and the social

Explanations for various social patterns and experiences of illness including: differences of gender, ethnicity, employment status, age and social stratification

Articles by Laurie Edwards

The Koan of Illness: Empowering Yourself

The Koan of Illness: Healing The Trauma

The Koan of Illness: Healing Your Relationship

The Koan of Illness: Illness as a Path to Personal Growth

The Koan of Illness: Illness as a Path to Spiritual Growth

The Koan of Illness: Integration: A New Vision For Healing

All Our Courses

• Interviews
• Grace and Grit:  A Book Review
• An Integral Approach to Illness

• Lynn’s Integral Life module – the first six 6-minute clip is on the quadrants. You will need to belong to integrallife.com to see the subsequent clips.

  a. https://integrallife.com/koan-chronic-illness/

• Integral Approaches to Illness

KOI Worksheet Empowering Yourself

Berne, Katrina.  Running on Empty
Bernhard, Toni.  How to Be Sick:  A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
Brownlee, Shannon.  Overtreated:  Why Medicine is Making Us Sicker and Poorer (economic book of the year in 2008).Chodrin, Pema.  When Things Fall Apart
Donohue, Paul J. Ph.D. and Mary E. Sigel Ph.D.  Sick and Tired of Being Sick and Tired:  Living with Invisible Chronic Illness

Dossey, Barbara. Nurse Coaching
Edwards, Laurie:  In the Kingdom of the Sick:  A Social History of Chronic Illness in America and Life Disrupted:   Getting Real About Chronic Illness in Your Twenties and Thirties
Feldman, Lynne.  Integral Healing
Fennell, Pat.  The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life

Foster, Jeff.  Falling in Love with Where You Are.

Documentary:  "Out of My Head" chronic migraine.

Illness in Literature and Film

(a few suggestions – find your own and add to our list)

Books (fiction, autobiography)

• Bolte Taylor, Jill.  My Stroke of Insight.
• Genova, Lisa. Still Alice
• Blume, Judy. Deenie
• Ishiguro, Kazuo. Never Let Me Go
• Michael Crichton. The Andromeda Strain.
• King, Roger. Love and Fatigue in America
• Bailey, Elisabeth Tova. The Sound of a Wild Snail Eating
• Feldman, Lynn. Integral Healing.

Films

• Girl Interrupted (mental illness)
• One Flew Over the Cuckoo’s Nest (institutions)
• Philadelphia (AIDS – employment)
• Dallas Buyers Club (AIDS, commerce),
• Awakenings (Parkinson’s – medical treatment)
• A Beautiful Mind (mental illness)
• Silver Linings Playbook (mental illness)
• Angels in America (AIDS politics)
• Theory of Everything (Motor Neuron Disease or ALS),
• Away from Her (Alzheimer’s)
• Still Alice (Alzheimer’s) 
• 50/50 (cancer and family and friends)
• Why, Charlie Brown, Why?  (Janice has leukemia),
• Elephant Man (neurofibromatosis)
• Wit (cancer)
• Dancer in the Dark (degenerative blindness)
• My Left Foot (cerebral palsy)
• Contagion (epidemic)
• Terms of Endearment (cancer)
• This is Where I Leave You (death)
• Philadelphia (HIV/AIDS)
• The Beach (societal attitudes towards disability)
• Breaking Bad (cancer)
• Crazy Sexy Cancer
• The Fountain (cancer)

• An Australian contribution to the films about chronic illness is a movie called Penguin Bloom. It is about a magpie (bird) that adopts a family and helps them negotiate the trauma and project that occurred when the mother has a fall and becomes paralysed.

  Here is a link to the real life story. https://youtu.be/RY6chPJHv1w

  The film: https://youtu.be/VQnVoHXIhfQ