Practical Tools for Managing ME/CFS: Insights from Amy Mooney, MS OTR/L and caregiver

Caring for a teenager with severe ME/CFS has been a life-changing journey for me, both as a mother and as an occupational therapist. The complexities of this condition—where energy levels can shift dramatically and unpredictably—require more than just patience. Managing symptoms and tracking functional abilities has been essential for us, both to understand what’s happening day to day and to communicate effectively with healthcare providers. Over the years, I’ve developed tools that have made this process more manageable, and I want to share them with other families and professionals navigating similar challenges. These strategies are designed to provide clarity and structure while easing some of the burdens that come with caring for a loved one with ME/CFS. 

Essential Tools for Tracking Symptoms and Daily Performance

Health and Functional Performance Summary​:
This summary sheet is your roadmap. It gives you and your healthcare team a bird’s-eye view of an individual’s daily capabilities and limitations. By documenting this consistently, you can see trends over time—what’s improving, what’s declining, and how various treatments or interventions are affecting overall function. This insight helps you make informed decisions, and it’s a critical tool for discussions with healthcare providers, educators, or even insurers when it comes to advocating for necessary support.

Symptoms and Functional Performance Tracking​:
In ME/CFS, symptoms can wax and wane dramatically, and it’s easy to lose track of what affects what. By tracking not only the symptoms but how they impact functional abilities (e.g., mobility, concentration, ability to perform daily tasks), you create a detailed picture of the condition’s real-life effects. Over time, this record can help you spot patterns—perhaps certain activities consistently trigger setbacks or specific treatments bring relief. This data-driven approach not only informs your next steps in care but also strengthens your case when applying for accommodations or disability benefits. 

These tools are more than just logs—they’re powerful advocacy resources. Whether for doctor visits, school meetings, or disability applications, these records document the reality of ME/CFS and its impact, ensuring your loved one’s needs are seen and understood. 

Finding Local Support Services

Managing ME/CFS can feel overwhelming, but tapping into local support services can lighten the load. Many of these services can now come to your home or be accessed virtually, which can be a game-changer when someone is struggling with mobility or severe fatigue. 

Here’s how to find these services effectively: 

• Home/Mobile Services: Search for terms like “home/mobile labs,” “home/mobile phlebotomy,” or “home/mobile blood draw” to locate providers who can perform necessary tests from the comfort of your home. This can save your child the physical toll of traveling to a lab or clinic. 
• Infusion Services: For intravenous therapies, such as saline infusions or medications, you can search for “home/mobile infusion services” to find healthcare providers who offer these treatments at home. 
• Nursing and Dental Care: Home-based healthcare doesn’t stop at labs and infusions. You can also find in-home nursing services, dental care, and even eye exams by searching for “home/mobile nurse,” “home dentist,” or “home eye exam.” These options reduce the strain on your loved one and help keep up with essential health maintenance Even if a clinician does not typically see clients at home, don’t be afraid to ask. 
• Virtual Healthcare: Virtual care has expanded greatly in recent years, making it easier to access professional medical advice without leaving home. Searching for terms like “virtual nurse,” “telehealth doctor,” or “virtual immediate care” will help you find these services, many of which can be accessed quickly and affordably. Adding “near me” to your Google searches can refine your results to find local providers available to you. 

The journey of caring for my daughter with ME/CFS has taught me the value of structure, planning, and most importantly, advocating for her needs. While no single tool or approach can solve all the challenges, having a system to document and track symptoms, finding accessible healthcare services, and knowing how to advocate for resources can make a world of difference. I hope these insights can provide some relief to other families facing similar struggles and empower you to feel more in control of this unpredictable condition.