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  • Redefining ‘Exercise’ for Severe ME/CFS & PEM: The Smallest Victories Matter

    Redefining ‘Exercise’ for Severe ME/CFS & PEM: The Smallest Victories Matter

    Please honor your own energy envelope as you read. Whether a sentence… a paragraph… or even a glance at the headings, whatever feels right for you in this moment is perfect. Compassion. 🙏

    When we speak of “exercise,” what do we really mean?

    For most of the world, the word conjures images of jogging paths, yoga mats, or perhaps the thrill of surfing. But for people living with severe ME/CFS, Long COVID, or energy-limiting illnesses, those images feel alien—sometimes even harmful.

    A recent article critiquing Graded Exercise Therapy (GET) made some valid points about the dangers of pushing beyond one’s limits. But it included an example of going surfing as a form of joy-based movement. For many of us who can’t even sit up for long, that kind of suggestion doesn’t just feel out of touch—it feels quietly devastating.

    Because for us, “exercise” might mean:

    • Sitting up in bed for 60 seconds.
    • Taking a shower.
    • Getting dressed.
    • Writing a message to share with friends.
    • Fill in the blank: _______

    These are our mountains.
    These are our triumphs.
    And they deserve to be seen and celebrated.

    Why Surfing Isn’t a Helpful Example

    1. Most patients are not high-functioning.
    Many of us are bedbound, housebound, or dependent on wheelchairs. To suggest activities like surfing may not feel inspiring—it may feel shaming.

    2. PEM doesn’t care about your mindset.
    A shower can mean days in the dark. Making tea can require a week of recovery. GET fails not because we aren’t trying—but because our cells can’t keep up.

    3. Joy comes from adaptation, not performance.
    Recovery may—or may not—be possible. But living meaningfully within this illness is. A breath of fresh air, a ray of light through the curtain—these are sacred moments.

    A More Gentle Framework: What Is Possible?

    1. “Bedercise”: Movement Within the Envelope

    • Gentle arm lifts (or just muscle engagement)
    • Ankle rolls for circulation
    • Breathwork as internal movement
    • Stretching fingers, wiggling toes

    Each of these is valid. Each of these is enough.

    2. Celebrating Non-Physical Victories

    • Listening to a few minutes of an audiobook
    • Looking out the window
    • Enjoying the scent of tea or essential oil
    • Smiling, even once

    3. The 50% Rule
    If you think you can do something—do half.
    If you could clean the counter, just rinse a spoon.
    This helps avoid crashes and still creates a feeling of self-direction.

    4. Redefining Progress
    Progress may mean staying stable.
    It may mean one less crash this month.
    Or sitting up for 30 seconds longer.
    These are wins, even when invisible.

    A Call for More Inclusive Stories

    If we want real awareness, we must include severe ME/CFS patients—not just those well enough to surf or work part-time.

    Your struggle matters.
    Your body is not broken—it is navigating a broken system.
    Your stillness is not failure.
    It is wisdom in motion.

    Rest Is a Practice—A Sacred One

    For those with ME/CFS and other energy-limiting conditions, rest is not absence. It is presence. It is the heart of the path.

    In Dzogchen, as taught by Namkhai Norbu, rest is a return to the natural state—effortless, luminous, whole. In Ramana Maharshi’s Self-Inquiry, resting in the question “Who am I?” leads us not into striving, but into the stillness beneath all identity. In Samatha meditation, taught by the Buddha, rest is calm abiding—shamatha—the ability to remain at ease without grasping.

    When you lie in stillness,
    when you breathe quietly through exhaustion,
    when you choose not to push—

    You are exercising.

    You are aligning with ancient lineages that saw rest not as a failure of effort,
    but as the purest exercise of wisdom.

    So if all you did today was rest,
    you did something holy.

    🙏🕊🙏

    For those interested, here is the article that inspired my post. But, Surfing! Haha! 😆 Surfing the internet, maybe. The author clearly doesn’t consider people living with moderate or severe ME/CFS in his/her writing of their article. 🤔

    SOURCE LINK: Why Graded Exercise Fails for PEM (And What Actually Works)

  • Imagining Movement: An Introduction to Gentle Exercise for Those Living With Post-Viral ME/CFS

    When living with post-viral ME/CFS, exercise can seem like an impossible dream. For many, the simple act of getting out of bed can take monumental effort, let alone the thought of stepping into a gym. However, there are ways to gently integrate physical activity into your life without exacerbating symptoms—and these steps don’t necessarily start with physical movement. Sometimes, they begin in the mind. This blog series will explore how to approach fitness slowly and mindfully, honoring the energy envelope you have, while cultivating a connection with your body through imagination and gentle progression.

    Step 1: Imagining Your Workout While Resting

    There was a time when I could only imagine going to the gym. Lying in bed, too fatigued to move, I would close my eyes and visualize walking through the doors, feeling the cool air, hearing the gentle hum of machines, and seeing people engaged in their routines. While my body was still, my mind could practice moving. This visualization became the first step in reclaiming my relationship with exercise.

    When you’re living with moderate to severe post-viral ME/CFS, physical movement may not always be possible, but visualization is a powerful tool. Research has shown that imagining movement can activate similar pathways in the brain as actual movement. This means that even on days when physical movement is impossible, you can begin your fitness journey by lying down and visualizing yourself working out. Imagine yourself lifting weights, stretching, or walking on a treadmill at a slow, gentle pace.

    This is a form of mental exercise that can help reduce the fear or mental barriers around exercise while helping you develop a sense of routine. It’s about creating a safe space where movement feels possible—even if it’s just in your mind.

    Step 2: Visiting the Gym Without Working Out

    As my energy increased slightly, my next step was simply driving to the gym. But I wasn’t going in just yet. I would park in the lot and sit in my car, looking at the building and feeling the atmosphere from the outside. This might sound small, but this was a victory in itself.

    For those with post-viral ME/CFS, even getting dressed and leaving the house can be an accomplishment. Driving to the gym without the pressure to perform is a gentle way to integrate fitness back into your life. By sitting in the parking lot, you are allowing your mind and body to adjust to the idea of visiting the gym as a place of healing, rather than a place of exhaustion.

    On the next level, once I became more comfortable, I would enter the gym—but not to work out. Instead, I would bring a book, find a comfortable spot, and simply spend time in the environment. I was surrounded by the energy of others exercising, but without the pressure to join in. Being in that space helped me to feel like part of a community, even if my workout looked different from everyone else’s.

    This slow exposure allowed me to rebuild my confidence and develop a positive association with the gym, where it became a place of nourishment rather than stress. If you’re living with post-viral ME/CFS, these small steps are monumental and can be celebrated as progress.

    Step 3: Moving with Mindfulness

    Eventually, there came a day when I could engage in some light movement—whether it was stretching, walking slowly on a treadmill, or using a set of light dumbbells. By this point, my relationship with exercise had changed. I no longer approached it as something that required hard effort, but instead as a way to gently connect with my body and breath.

    If you are ready to move beyond visualization and sitting at the gym, the key is to start slow and be mindful of your energy limits. Use light weights or resistance bands if you have them at home, or practice simple, controlled movements that a physical therapist may have recommended. The goal here is not to push your limits, but to move with awareness and take breaks as needed.

    Step 4: Having Equipment at Home

    If getting to the gym is not feasible due to symptoms or energy limits, you can still work on gentle movement at home. Investing in a few basic tools like resistance bands or light dumbbells allows you to incorporate mindful exercise into your day. Start with very low repetitions and listen to your body—your energy level may change from day to day.

    Using these tools at home creates a bridge to more regular movement, without the added strain of commuting or dealing with external stimuli. It also gives you more control over your environment, which is especially important for those dealing with fluctuating energy levels.

    Progress, Not Perfection

    For those with post-viral ME/CFS, it’s essential to remember that progress is deeply personal and non-linear. Some days, even the thought of exercise may be overwhelming, and that’s okay. Other days, simply walking into the gym or using a resistance band at home might feel like a huge accomplishment. Both are equally valid.

    Final Thoughts: A Compassionate Approach to Exercise

    Living with post-viral ME/CFS means that you must approach fitness with compassion and patience. Your fitness journey doesn’t have to look like anyone else’s. It doesn’t have to involve heavy weights or hours on a treadmill. It can start with visualization, gentle exposure, and mindful movement, taking small steps that respect your body’s limits while creating space for healing and growth.

    In this blog series, we’ll explore various exercises and practices that can help you engage with fitness at your own pace—whether it’s simply imagining a workout, sitting in a gym parking lot, or engaging in light movements with tools you have at home. Each step is progress, and each step brings you closer to a place of balance between body, mind, and spirit.

    Next Post Preview: The Benefits of Visualization in Exercise for Post-Viral ME/CFS

    In the next post, we’ll delve deeper into the power of visualization as an exercise tool—how it can create new pathways in the brain, reduce anxiety around physical activity, and serve as a foundational practice on your fitness journey.

    🙏🕊️🙏