Check-in with how you are feeling and decide how you want to utilise the sessions in the free foundation program called SOFT BEGINNINGS for People with ME/CFS. There are 10 sessions for you to try. We suggest doing one or two sessions a week, or just going at a pace that suits you.
First 5 sessions are available Now!
Getting Started
Welcome! Lovely to have you here. ME/CFS is not an easy illness, so this website has been set up just for you. Please take the time to explore and use whatever suits you: we all have our preferences and symptom profiles, which may vary with time. In this part of the website, you can check in to see how you feel and decide how you want to utilise the sessions in the free foundation program, SOFT BEGINNINGS for People with ME/CFS. There are ten sessions for you to try. We suggest doing one or two sessions a week or just going at a pace that suits you. Later, other programs will build on this tier-one program.
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Each session in SOFT BEGINNINGS comprises two parts: Gentle Moves to ease your body and a Meditation. Sessions can be done on a yoga mat propped on pillows in bed. If you are resting in bed, you may like to fold a bath towel to form a 10-15 cm/ 4-6 inches wide rectangle and place it lengthways behind your spine as extra support. Please set up in a space where you are cosy but not hot. Dress comfortably. Lie or sit as suits you best and get snugged in with cushions, pillows and folded blankets; these can go under your knees, behind your head, under your feet or wrists. However, you feel supported. Each session theme is in the Companion Guide, offering you some ideas and management strategies in a narrative form to enjoy alongside the movements and meditation. I suggest reading before doing the session, but again, the choice is yours.
Sam will present the meditation. She suggests you have a blanket or rug handy, as your body may cool during the meditation.
Hydration helps the body with circulation and fascial health. Please remember to drink water in the hours before and after our sessions.
If you need to drink water during a session, swap blankets or cushions, or wriggle or change position to be even 7% more comfortable, please do. Be ready to rest often during the session. You might even snooze which is fine too as it is a nice way to relax and you can always re-listen to the session if you choose.
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The sessions are offered as a degustation of ideas for you to select from. To help you prepare, please think about the following four questions:
1. WHERE ARE YOU ON THE CORGI SCALE?
It is good to take a moment to understand your energy before starting a session. The Corgi scale has been designed especially for people with ME/CFS, so we don’t need to think too much about numeric scales or words or anything. We can just choose which corgi aligns most with how we are feeling.
Do you know which corgi you feel like today? Take a moment, give yourself a breath in and a soft sighing breath out (or some other grounding pause), then look at each photo slowly.
2. WHAT ELSE IS HAPPENING REGARDING ACTIVITIES, HEALTH, AND STRESS?
Please consider what you are usually able to do within a day and how much energy you can allocate to trying new things today. Is today feeling like a relatively good day in this context? Or not so much? Have you been busy or stressed? Do you have a sniffle, or is it hot? These things could lessen your available energy, so it is helpful to enhance your preparation by factoring them in and adjusting your expectations.
If you feel have 2 min of activity to add in, for example, that is great. Lie comfortably, relax, and listen out for what sounds like a good activity for you to spend those valuable 2 minutes on. You can use the remainder of the session to practice two highly regarded skills viz regulating by relaxing and seeing how much you can do without exacerbating symptoms.
Research is showing finding “uplift” (minor pleasant sensations) is an added benefit to pacing – perhaps you can find something you particularly enjoy in the session today; you might also feel a sense of accomplishment for getting yourself set up and being involved.
3. ARE YOU READY TO SAVOUR RESTS AND SUBTLETIES?
We can practice gentle actions, AND we can practice saying, “A rest would be beneficial now,” and taking and savouring that rest. You are always welcome to rest at any point during the session.
Other subtle options include doing tiny, barely perceptible movements, imagining the movements, or just letting the sounds keep you company for a while.
If you think about how elite athletes are coached to visualise their activities, perhaps you could benefit from imaging movements. If you are someone who doesn’t visualise, that is fine too, as people using the sessions and just listening have found that restful, too.
Practising how relaxed you can be in your limbs, tongue, jaw, torso, hands, and feet can also be useful if you prefer relaxing to one of the suggested movements.
If you would like further information on rest, please see the 4 Types of rest in the COPING STRATEGIES.
4. ARE YOU MONITORING HEART RATE VARIABILITY?
Heart Rate variability has been associated with fatigue severity and is now measurable on phone apps for people who have chronic illnesses. An example is found at makevisible.com, where the developers themselves have Long COVID and a variety of other energy-limiting conditions. Some people with ME/CFS choose to add this objective data to their own perceived sense of well-being and the Corgi Scale. Remember to decide for yourself what suits you well today and lessen your activity level anytime you need to keep the program sustainable for you.
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Below are some examples of ways to enjoy a session of SOFT BEGINNINGS. Which one suits your body and your circumstances today?
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In our first session, we are considering feelings of calm and refreshment, like we are on the fourth day of a relaxing holiday. To do this, I suggest practicing curiosity – can you remember a time when you went wandering in a delightful new place with a friend or solo; when you read a book with innovative ideas or saw a new face and felt the tickle of new possibilities? Perhaps you also recall the jubilation of twisting through alleys to unexpectedly find a café by the sea. We are going to dial down any demands on ourselves, attainment goals or “shoulds”, and instead, do a micro-wander that takes very little energy but gives us a chance to explore, choose what we like and celebrate anything that feels comforting or delightfully simple.
Let’s do this program using very small amounts of energy. When I say small, however, the total still may be a substantial % of your daily allocation so please rest as much as you like. Anytime. You can relax by deliciously doing nothing or through finding the nicest ways to move. There is also the option to relax the body while the brain explores things of interest or imagines motions we want to enjoy (like an elite athlete visually practicing prior to an event). When we choose, we can also give ourselves specific brain resting time. Our brains use a lot of energy in active thought and action, so occasional restful processing time (like zoning out, lying watching leaves blowing in the trees or gentle awareness of a meditation teachers voice) gives brains time for integration and recharging.
ME/CFS limits our energy, so we can benefit from gaining respectful awareness of how much energy we personally have to spend each day. That is, what sits easily in our energy envelope. (Our energy can also be described as how much gas we have in our tank, money in the bank or spoons available to use). In all the metaphors, there is a sense of a limited, but valuable resource that is being used by background activities (e.g. breathing, temperature regulation, digestion, thinking), by activities we choose/need to do (e.g. standing, cooking a meal, new movements), and by our stress habits.
We also have a comfort envelope. When we are coping with demands in our environment (e.g. noisy shopping mall, sudden change of temperature) and/or internal issues (leaky gut, infection, painful back, hypermobile joints) we are using energy more energy than when we relax. Something you could explore before the session begins, is to reduce background energy. What makes you makes you more comfortable? A cushion under the head and a cosy blanket over you? A hot water bottle or a cool cloth? An extra cushion under the legs or folded towels under the wrists; lower the volume on your device and pull the blind half down? How comfortable can you get? 7% more? Let’s get background energy usage down so we have more of our valuable energy for gentle learning and having some fun.
Respectful awareness of energy and comfort also help us when we move. If someone says turn your head, we usually go right there, as far as the head turns and our eyes stare ahead or dart around. But if we are doing it with more consideration, we can also move our chest to take the strain off the neck. We can shift balance of our knees, our feet. We can help facilitate distribution of forces across the rest of the body though muscles and the elastic properties of fascia. We really only find this out, if we slow down and make the movement smaller. When we go smaller, slower and as lightly as possible, we can also begin to feel where comfort turns to strain, at the end of the line of movement. We can relax stress habits.
Could “less is more” be a way to save energy, pace better and achieve more?
I suggest you aim to do this lesson as gently as if you were planning to do it three more times and still have some energy to spare. You might need extra energy later in the day, so don’t spend it all here now. Enjoy relaxing and exploring new details instead. Like you are enjoying an imagined holiday.text goes here
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If we imagine walking beside a ferny creek, up a hill to a headland then down a sandy trail to the beach, many of us (well or unwell) would choose to pause at a few places on the way. Perhaps we would pause briefly to get our balance before leaping across stones in the creek. If the hill is steeper than we are used to climbing, we may rest halfway. We may stop to take photos from the headland or sit on the beach watching the surfers. If we are short on time, we may dawdle and admire the light shafts in the ferny glen foregoing the beach. If it starts raining, we may sit under a tree. Through all this, we manage our time and our energy.
We prioritise, discern and consider how we match with the changing environment. We use various types of pausing to help us manage our wellbeing, our interactions with the world and enable us to savour our experiences. In managing ME/CFS, (when energy is ongoingly a limited resource for reasons we don’t yet fully understand), we can try a similar approach. Here are some ways to make our daily choices more conscious.
To keep a sustainable amount of energy available for use and reduce Post Exertional Malaise (PEM), we can switch between doing and resting.
We can choose amongst different types of physical resting, including pre-emptive resting to power us later, post-activity resting to facilitate recharging and micro-resting (rest snacks) to give us little boosts. We can also switch betweentypes of mental resting; dropping from multi-task processing to single task focus, from concentration to gentle noticing to vague awareness. We can schedule in quiet time following emotionally challenging talks.
A tactic for when we are active, is to switch between types of energy being used. For example, typing at a computer requires different energy than hanging washing. Lying on the lounge chatting with a beloved friend is different from a zoom telehealth call or stepping across stones in a creek. We may find ourselves physically tired in one area but able to carry on in another. Overall, it has been suggested it can help pacing to keep activity levels in the range where your breath stays fairly steady.
Some people with ME/CFS use blocks of time in the day to help moderate energy usage. Some, however, find this impractical as their days vary too much and flexibility is essential. Either way, it can be useful to periodically check-in and listen to the body, energy capacity and current level of ease.
Our circumstances also urge adaptability: when our personal situation unexpectedly changes (e.g. having a bad sleep the previous night) or we find external circumstances change (the doctor is running late), then our well laid plans may need to change and we may need new strategies to cope.
A care book constructed by you, and for you, can be a handy compilation of tools and tips and especially useful when you are too tired to think what to try. Since our individual personalities, preferences and symptom range vary it is good to choose things that you have found helpful. Adding favourite poems, sayings and pictures may be inspiring. The key is to have options: to move between resting types and between activity types throughout our day. More options gives us more autonomy.
“Pacing is a good idea” seems a simple sentence, but when you have a lot of hopes, a to-do list, responsibilities and ideas but energy is limited, it can be confronting to say the least. Adding nuance and giving ourselves a greater skill range provides us with more ways to manage daily life and keep within our energy and comfort envelopes. Choosing what you like, and practicing when you can, helps things gradually develop. Learning keeps it an active process and returns agency.
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Have you have ever manoeuvred a shopping-trolley with one stuck wheel and one aimlessly pivoting? If so, then you probably understand the frustration and effort required to propel forwards against added resistance. Living with complex chronic illness can sometimes feel similarly awkward. Fortunately, just as oil and a screwdriver can regularly help tune up a trolley’s wheel action, we can subtly adjust our own movement qualities and energy efficiency by using a few handy tools. Here are several possibilities to play with.
Neurologically, we are organised so that certain actions go together relatively easily. Try sitting up, say on the front edge of a chair (you can do an equivalent action lying curled on your side in bed, if you prefer). Relax and slowly curve your lower back backwards i.e. towards the back of the chair. See how far you go softly slumping, just easing into it, exhaling and letting your eyes gradually lower towards your hips. Then, sit up and try again. This time, keep your eyes looking up above the horizon, inhale and softly curve your back towards the chair. Using the same amount of energy, do you go the same distance? I find letting my eyes lower as I exhale means I curve much further just by relaxing. What is your experience? Can you find your version that feels coherently calm and co-ordinated and reduces the energy needed to move? Can you also find a co-ordinated version of turning your head and eyes?
Athletes practice connecting ideas and movements to make the most of their energy. We can practice the same mind/body principles they use to help us with our energy usage. We can use preparatory visualisation of lightness and flow before we go for a short walk, like a sprinter would use preparing to run a race. Like an ice skater focusing and gliding in anticipation of an airborne spin, we can find settled and mindful balance before standing up from a chair.
We can also lighten our loads by reducing of our habits of holding tension. Tension can build up incrementally in shoulders, toes, tongues, tummies and jaws without us registering it especially in hard times. Do you know the two prime areas you hold tension? Can you move one of those areas very slowly to feel the stiffness and then breathe into that area and sigh tension out? When we practice relaxing more consciously, we lessen unnecessary energy wastage and we have more energy for the fun stuff.
Connective tissue, including fascia, surrounds our cells, our organs and covers our muscles. It is a complex structure with elastic properties that adapts and changes. Usually when we stretch a limb out, or twist our torso, we stretch the elastic components including fascia; when we release it smoothly recoils to draw us back to centre. Keeping our fascia elastic gives us free energy smooth recoil. Self-myofascial massage with soft balls or soft rollers, and drinking water, can help fascial health.
Some movements and positions have been found to induce a state of calm, like lying with hips slightly raised and legs in the air. They can be useful for down regulating and conserving energy between activities and for resting in times of overwhelm. If you regularly practice your favourite calming positions, they may also become physical prompts for your brain and body to relax more readily.
Breathing with more comfort and ease can also help autonomic regulation. Researchers have noted breathing patterns of people with ME/CFS can be disrupted, so some in the community try Yogic techniques to help restore breathing patterns. Even more simply, we can enjoy relaxing the chest, belly and face and finding a lovely sigh out that helps the body settle into a calm resting state. Soft eyes and soft tongue and sigh. Ahhhhhhhh.
If we gently practice several of our preferred ways, and we improve just 2% in each, it adds up to a valuable energy gift and helps us enjoy more calm in our brains and bodies.
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ME/CFS is a challenging illness. If we consider that its symptoms include unrelenting fatigue,
sleep disturbance, metabolic, immunological, vascular and neural changes, brain
inflammation, autonomic dysregulation, heightened sympathetic tone, sensory sensitivities,
orthostatic intolerance, pain, gut dysbiosis and cognitive impairment, we are reminded that
when it feels horribly difficult, it is because there is a lot of difficult stuff happening.
A particularly challenging symptom of ME/CFS, is Post Exertional Malaise. PEM is
experienced as a heightened response to (physical, emotional, social or mental) activity. Its
onset may be delayed, frequently occurring 24-48h after the trigger activity. Sometimes,
PEM can be triggered by an accumulation of various activities over several days. We can
practice pacing but still occasionally be faced with PEM. So, how can we navigate our days
of PEM in ways that promote our strengths and happiness? Here are two possible
approaches.
First, is the active support that we can give our bodies including:
• sufficient hydration (drinking water; hydration salts if needed),
• notice how you are feeling and use light small movements to reduce stiffness
• promotion of parasympathetic tone,
• resting more frequently in the day
• switching away from your fatigued mental/physical/emotional areas and engaging
the available areas e.g. if you are mentally tired, try sitting in the sun
• referring to care plans for your personal tips on activity moderation and
nourishment
• gently doing a series of bite-sized activities with pauses in between.
A second way, is to consciously engage compassion. When we see a young child, puppy or
kitten injured or spooked, frequently, we comfort and soothe, choosing our language/ tone
to be supportive and caring. We may sit with them through the discomfort, or address
issues respectfully. We may use distraction (e.g. walk outside to stand with them under a
tree) and help them re-find wonder and sensorial re-engagement with their surroundings.
Then, if we can, we create opportunity for positive new learning from the experience.
In dealing with PEM, our autonomically heightened, neurally challenged, metabolically
exhausted selves similarly need compassionate care. We can comfort and soothe ourselves
with music, podcasts and other things we enjoy; practice gentleness and patience as we
rest. We can address some issues respectfully; for example, our frustration, our
disappointment. Our slower pace gives us opportunity to enjoy nature, birdsongs and
billowing clouds. We can note small things, like new leaves on pot plants and heart-warming
smiles to renew our connections with our surroundings and find moments of joy.
We can also gradually learn to better recognise our PEM triggers. Strategies for learning this
can be practical aids such as journaling and pattern recognition. It can also include being
curious, learning from failure and having kindness and respect towards the efforts being
made. That is, whilst living amongst the multi-faceted challenges of this illness, we can use it to build on our very humanity.
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Our senses enable us to detect beauty and tenderness, feel cooling breezes and smell lemon zest. They offer us the joy of sunset colours and a variety of bird songs from melodious trills to cheeky squawks. They also protect us by revealing the world around us. Sometimes, if we have been in the safety/danger detection mode for a while, it takes settling and pausing and conscious indulging to rediscover the delicious pleasures that our senses help us celebrate.
An enjoyable way to reacquaint with our senses is to play 5 4 3 2 1. In this, we look around and name to ourselves 5 things we see, listen for 4 different sounds, touch three textures, smell 2 things and taste (if the circumstances are right) the air or one yummy something. You can reconfigure the game by utilising a category of things e.g. flowers, yellow things, foods.
Do you have a favourite fruit that you could imagine touching? Does it have a texture so distinctive that if you were passed it, with your eyes closed, you would still recognise it? Does the shape help you discern it? As you move your hands across the surface is there a particular sound that you know without knowing that you do? We know rustling is different from soft squeaking and what if our nails drum on it, can we then tell how solid it is, how ripe it is? And the smell, for many it is the most noticeable thing. For others not so much. We all have our preferred ways of sensing. Now to eat. Already prepared for the taste by feel, smell and even sound, to my astonishment even if I am just imagining the fruit, I find my mouth is watering, ready for the next sensation, taste. My brain is processing my sensory information in readiness for how I will next connect with my environment.
It can be lovely to have things in our room that evoke calmness. Snuggling with a particularly soft blanket, cushion or pet can be soothing as we extend touch beyond our hands. For some, a weighted blanket can bring steadiness; a hot water bottle can bring ease. What about the cover of a favourite book opened ready to read? Do you think book shops have a good smell? Or is a selection of teas in their cannisters or spices in an Indian grocery store more intriguing? Curiosity, as we detect the elements of various smells or taste, can also restore us to a calmer state of being.
Consciously slowing and expanding our senses when we have time in nature is also known to be helpful. The Japanese term Shinrin yoku describes relaxation through focussing on sensory engagement with nature. It is also called forest bathing: a person walks slowly between the trees, touching bark and leaves, feeling textural variety, inhaling the atmosphere, noticing the scrabbling sound of birds and insects on the forest floor and feeling the cooling shade alternating with dappled sunlight, hearing babbling waterways. If you slow-down in your local natural space (maybe experienced from a window, balcony or park) even if you don’t touch, do you notice light angles and intensity change with seasons, do leaves sound different in gusty wind compared with consistent breeze? Do different birds visit at different times of the day? We can find many ways to surround ourselves with gently soothing experiences and enjoy sensorial splendour.
