Resources for People with ME/CFS, Long Covid, & Caregivers

As someone living with and managing ME/CFS or Long Covid, 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.

Tracking your Symptoms

Keeping track of your symptoms through journaling or charting, especially early on, can help you identify your personal limitations and provide valuable data for your medical team. 

The symptoms of ME/CFS and Long Covid 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 or About Long Covid page for lists 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 and Long Covid research at the same time.

Securing a Personal Support System

It is crucial to have a personal support system of family, friends, or caregivers to help you through this difficult, debilitating disease. It is important that this support system understands what you are going through so they can help in supportive, empathetic ways. However, it can be difficult to find reliable information and avoid misinformation.

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

Resources for Caregivers

Caregivers are an essential part of a patient’s support network, but caregiving isn’t easy. Caregivers face their own emotional, financial, and physical challenges that can lead to burnout, mental health difficulties and other hardships.

Our friends at CaringInfo.org created an amazing resource for caregivers navigating the legal and logistical challenges of severe illness. While designed for people facing life-threatening conditions, many medical resources such as palliative care and hospice, financial resources such as Medicare and insurance, or other items like advance directives or bereavement care, can be helpful for those seeking to learn more.

For additional support for caregivers, see the below resources:

Visit our guide for caregivers and loved ones.

Click here for resources for caregiver burnout.

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 and Long Covid 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. 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 and Long Covid, your best choice may be to work with a doctor who is actively curious about you first, and ME/CFS or Long Covid second. Visit our resource page for medical providers for information that you can share with your doctor.

Many people with Long Covid focus also finding doctors who are willing to be a partner in their medical care and listen to their needs.  

For individuals looking for resources specific to navigating Long Covid care, check out this article from Solve M.E. Board Member, Cynthia Adinig. 

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 on our School and Work Guide.

Navigating the Disability Process

One of the most horrific effects of ME/CFS and Long Covid 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.

Finances

If you have been diagnosed with ME/CFS, Long Covid, 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.

Understanding Post Exertional Malaise (PEM):

Understanding and managing Post Exertional Malaise (PEM), the most devastating symptom of ME/CFS and Long Covid, is unfortunately an issue in all ages and stages of persons with these diseases. 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. 

With ME/CFS and Long Covid, 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 and Long Covid. 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, and check out the Stop. Rest. Pace campaign from our friends at #MEAction.

The Importance of Rest

As a person with ME/CFS or Long Covid, 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. 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 and Long Covid are not a psychiatric illness. However, it is common for people with serious medical issues to experience secondary anxiety and depression, and patients with post-infection diseases 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 and Long Covid. These diseases have so many tentacles that touch every single aspect of a person’s life: it is difficult to think of any area of life these diseases do 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.

988 Suicide and Crisis Lifeline (or call and text 988)

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

COVID-19 Long Hauler Advocacy Project: Facebook Groups

Body Politic COVID-19 Support Group

Dysautonomia International Support Groups

Children and Teens with ME/CFS or Long Covid

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.

Additional Resources

Below you’ll find resources created by our friends and partners:

 

Resources for Caregivers

 

Finding a Doctor

 

Navigating Disability

 
Understanding PEM

 

Children and Teens

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 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, 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 a diagnostic criteria, clinicians guide, and comprehensive literature review.

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