Resources for People with M.E. and Caregivers

As someone living with and managing ME/CFS, we know you have questions. Below are links to information about some of our most commonly asked questions. 

These resources are not intended to substitute individual, professional medical advice, diagnosis, or treatment. Please seek the advice of your medical provider before starting any new medication, treatment, or therapy. Solve M.E. cannot give medical or legal advice. 

On this page you will find:

  • Symptom Tracking
  • Securing your Personal Support System
  • Finding a Doctor
  • Work, School, and Finances
  • Post Exertional Malaise (PEM) and Pacing
  • Mental Health
  • Children and Teens with ME/CFS

Tracking your Symptoms

Keeping track of your symptoms through journaling or charting, especially early on, may help you identify your personal limitations and lead to a quicker and more efficient stabilization of your condition. With an important caveat, that this is an “up and down” illness even in the best of times!

The symptoms of ME/CFS are many and varied. Symptoms may be constant, worse some days, better some days. Or, you may experience a symptom for a while, and then it may dissipate as a different symptom appears. Visit our About ME/CFS page for a list of symptoms.

If your initial tracking begins at a time when you are very ill, be kind to yourself and use whatever materials are easily available to you. Pen and paper, a monthly calendar, or cell phone calendar are all perfectly fine options. Download this PDF worksheet to get started. You can also use the You + ME Symptom Tracking App to track your symptoms and contribute to ME/CFS research at the same time.

Securing a Personal Support System

It is imperative to secure a personal support system to help you through this most difficult, debilitating disease for a multitude of reasons. The ME/CFS diagnosis permeates every relationship, no matter how strong the relationship has been in the past. It can be stressful for family and friends to remain empathetic and understanding month after month.

It is difficult to protect your self-confidence and maintain your dignity if the persons in your life do not understand the current state of your debilitation. It is of crucial importance to educate your support system when you are able. Not only do you need to allow others to help you, but you also need to actually ask for help. Sounds easy. It’s not. Do it anyway. You’ll be glad you did. It can make a huge difference in your healing, and in your day-to-day life. 

If you are a person with ME/CFS seeking a support system, or if you are a caregiver and/or loved one of someone with ME/CFS visit our guide here.

Finding a Doctor

There are only a handful of specialists and clinical centers that specialize in ME/CFS around the country. Many of them do not take insurance and most have waiting lists that can be years long. Instead of seeking out a specific specialty, many people with ME/CFS focus on finding doctors who are willing to be a partner in their medical care and listen to their needs. 

There are several resources online that can help you make a list of potential doctors. Click here for more information. Your initial appointment with a physician should be treated like a job interview. Write your interview questions down. Keep your list of interview questions as short as possible, without compromising your ability to make an informed decision. You have the right to expect any physician to give your concerns their genuine consideration. Download our interview question worksheet and visit our full Finding a Doctor guide here.

If you are finding it difficult to locate any doctor in your area that is familiar with ME/CFS, your best choice may be to work with a doctor who is actively curious about you first, and ME/CFS second. Visit our resource page for medical providers for information that you can share with your doctor.

School, work, and finances

School and Work

Your symptom journal can be an invaluable tool to use with your employer or educators. Sharing your health information with your Supervisor or Teacher could lead to their sharing your information with Human Resources, School District Administrators, or vice versa. Remember, be selective about what information you share since it will likely be shared with others.

One month of charting can provide a snapshot of your current condition. Multiple months of charting can provide valuable information into the progression/regression of the illness. It is important to stress to your employer, or to your child’s school, how urgently you/your child want(s) to return to normal and back to work/school and identify the barriers preventing you/your child from doing so. Read more here.

Navigating the Disability Process

One of the most horrific effects of ME/CFS is the inability to work, and the often crippling loss of income. If you are unable to work, or if you feel yourself struggling to continue to work, do not hesitate to file for disability insurance. The time from applying for disability to the time of approval can take from six (6) to twelve (12) months or longer.

 There are multiple sources for disability insurance in the United States. Some large corporations provide disability insurance for their employees, private disability insurance can be purchased from insurance agents — prior to the onset of illness. A few state governments provide disability insurance payments for their government employees, and the federal government provides two types of disability insurance.

For more information, download our disability guide here or check out the COVID-19 Insurance Denial Guidebook, provided by the attorneys at Kantor & Kantor, LLP.

Finances

If you have been diagnosed with ME/CFS, or any chronic disease, you may be struggling or unable to work. Monetary disruption can lead to extreme stress levels, particularly if you are ill; and even more stressful if you are the sole financial support for your household. There are several important tips to help manage your financial journey: take stock of your monthly bills and outstanding debt, have a trusted confidant, and build relationships with your creditor. 

Download a PDF of our financial guide here.

Understanding Post Exertional Malaise (PEM):

Understanding and managing Post Exertional Malaise (PEM), the most devastating symptom of ME/CFS, is, unfortunately, an issue in all ages and stages of persons with ME/CFS. PEM is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. This symptom is unique to ME/CFS.

With ME/CFS, quick easy recovery cannot be taken for granted. Often crushing fatigue — even after minor everyday exertions — is a major concern for persons living through ME/CFS. The kind of fatigue being considered is a relentless “tired to the bone” fatigue that can persist for days, even weeks, and perhaps months after exertion. What is PEM, and why is it so important to discuss? Learn more here.

The Importance of Rest

As a person with ME/CFS, you need to determine your individual limits for physical and mental activity and plan your day accordingly. Sounds easy? It’s not! But, through trial and error, and careful charting of your symptoms after differing types of activities, you can find your rhythm to avoid “crashes.” Rest is the main ingredient for reinstating your physical equilibrium.

Activity Management also called pacing, is critical to navigating life with PEM. The Stanford Medicine ME/CFS Initiative has created a 4-Step Toolkit to Avoid Post Exertional Malaise. Before you start pacing, it can be helpful to identify the activities in your life that lead to PEM. Click here to find worksheets to identify your triggers. 

Warning: Graded Exercise Therapy (GET) Can Cause Harm

Graded Exercise Therapy is NOT the same as pacing. GET requires you to increase your activity over time, potentially pushing you to repeatedly trigger the PEM response. GET has been reported by many patients to be harmful and has left some patients significantly worse than they were before they started. GET can repeatedly push a patient to the point where the PEM response is triggered, resulting in an overall (possibly permanent) worsening of symptoms. For more information, read the open letter to healthcare providers from the Workwell Foundation

Mental Health

ME/CFS is not a psychiatric illness. However, it is common for people with serious medical issues to experience secondary anxiety and depression, and patients with ME/CFS are no exception. Feelings of anger, grief, hopelessness, and guilt are common as well. It is important to address the issues of loss in regard to ME/CFS. The illness has so many tentacles that touch every single aspect of a person’s life: it is difficult to think of any area of life this illness does not touch. Although it is important to stay positive, it is also important to be realistic with your internal thoughts. The energy you do have is best used toward recovery, not wasted on anger and frustration. Read more here.

National Suicide Prevention Lifeline: 1-800-273-TALK(8255) or 911 for Local Help For Support call NAMI Helpline: 1-800-950-NAMI (National Alliance for the MI) For Family Crisis Assistance: Text NAMI to 741741

Support Groups

These groups all take place online, some are volunteer-led and some are professionally facilitated:

ME/CFS Weekly Phone Support Group 

Bateman Horne Center Crisis Support
ME Action Support Groups

Center for Chronic Illness

Children and Teens with ME/CFS

As with adults, the degree to which a child or teen’s life is impacted by the disease depends on a number of things, including disease severity. If the child is mildly affected, he or she might benefit from a slightly modified school schedule and a reduction in social activity as long as parents and guardians recognize the need to avoid triggering PEM and worsening symptoms. If the child is moderately ill, the school and parent/guardian will need to work together to establish a substantially modified plan of education which might include private tutoring, remote learning, or some type of home-schooling. Children who fall into the moderate-to-severe range are generally unable to attend school at all and need help with even the most basic personal care.

It is important for family members and caregivers to know enough about the disease to understand what is happening and help guide the child’s activities in order to prevent worsening of symptoms. For more information about navigating pediatric ME/CFS and working with your child’s school, click here.

Continued learning

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Reading list:

Help Me! What I Wish Families Knew About ME/CFS: Myalgic Encephalomyelitis (ME) Also Known As Chronic Fatigue Syndrome

2020, Rebecca Susan Culbertson. Rebecca is a person with ME/CFS and a psychotherapist. She donated her time and writing to this resource page and has helped countless people with her worksheets, guidance, and openness about her families’ own journey through chronic illness.

When Force Meets Fate

2021, Jamison Hill. A healthy young man survives a fatal car crash only to be plagued by a mysterious illness that robs him of the ability to walk, talk, and eat solid food. When Force Meets Fate is a captivating, transcendent survival story ― one that forces all of us to reckon with our own mortality and the fragility of life.

The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole his Son

2021, Tracie White and Dr. Ronald Davis. This book is about Ron Davis, a geneticist at Stanford University, and his efforts to cure his son Whitney Dafoe, who has very severe ME/CFS.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

2015,  National Academy of Medicine (NAM) — then called the Institute of Medicine (IOM). One of the most comprehensive reports regarding ME/CFS, this report includes diagnostic criteria, clinicians guide, and comprehensive literature review.