MOSAIC Online ME/CFS Management Programme

Welcome to the CFS Team webpages.

We understand that living with ME/CFS can be hard. It can affect your physical and mental health and stop you doing the activities you enjoy.

Our online programme can help you:

• Understand ME/CFS
• Learn ways to feel more in control
• Do more of the things that matter to you

What Will You Learn?

• What ME/CFS is and why it can happen
• How to manage your energy levels
• How to plan your day so your symptoms stay more steady
• How to feel calmer and less stressed
• How to set small goals and celebrate your progress

Who Is It For?

This programme is for adults living with ME/CFS. You don’t need to be good at reading or writing. Everything is explained in a clear and easy way.

What You Can Expect

• Clear and simple information
• Tools to help you feel more confident
• A chance to learn what works best for your body

Remember

• You don’t need to do everything right away
• You don’t need to do it alone — ask for help if you need it

How to use the programme

The programme is split into different sections. Each section is under a different drop down heading below. It includes topics like:

• Pacing (how to manage your energy)

• Sleep
• Managing flare-ups (when symptoms get worse)
• Mental health

Each part has:

• Easy-to-read information
• Videos and links to other helpful resources to explore
• Activities to try
• Ideas for using what you’ve learned in real life

You will learn more if you try the activities as well as read the information.

Don’t try to do everything at once. We suggest doing one section each week, but it’s okay to go at your own speed.  You can also write down in a notebook how you feel and what helps you.

Our program is based on something called Acceptance and Commitment Therapy (ACT). This means it will help you make good choices, keep moving forward, and live a full life—even if you have fatigue. Before you begin the rest of the program, it will help to learn a bit more about ACT by reading the information below.

Acceptance and Commitment Therapy (ACT)

Some people with ME/CFS may believe they only have two choices: to give up or to fight the condition. But there’s another way. ACT (Acceptance and Commitment Therapy) is about living a meaningful life even with fatigue. Fighting fatigue can take a lot of energy and make things worse. Acceptance means being open to having symptoms, even if you don’t like them. It helps you stop struggling and focus on what’s really important to you—what brings joy and meaning to your life. Acceptance doesn’t mean you want to have ME/CFS. It means you stop trying to control the things you can’t change and focus on the things you can change.

This link explains more Royal Free Chronic Fatigue Service | The Role of Acceptance

Values

Your values are the things that matter most to you. They help guide how you want to live and the kind of person you want to be. For example, being kind, honest, or helpful could be some of your values.

Sometimes, when people feel tired or unwell, they lose touch with their values. They might feel stuck or unhappy. But remembering what matters to you can help you make good choices and feel better.

Here are some values to think about. Which three are the most important to you? [NP2] 

If you lived your life based on what really matters to you:

• What would you do differently?
• How would you treat other people?
• How would you take care of yourself?
• What goals would you work on?
• What would you stop doing?

The worksheet below can help you think more about your values Values-Worksheets.pdf .

What’s the Difference Between Values and Goals?

• Values are about the direction you want your life to go. You never really "finish" a value.
• Goals are things you can work on and finish. These can relate to your values.

For example:

• Value: Being a loving parent
• Goal: Read a story to your child every night
• Value: Enjoying nature
• Goal: Sit in your garden or the park once a week and see what wildlife you spot

Goal setting

A goal should be SMART:

• Specific – Know exactly what you want to do

• Measurable – Know how much or how often
• Achievable – Make sure it’s possible
• Realistic – Make sure it’s doable
• Time-limited – Set a time to finish it

Watch this video to learn more: Values vs Goals - By Dr. Russ Harris

Activity

Before you start this programme, take a little time to think about what’s important to you. What do you care about? What do you want to be able to do? What are your values and goals?

You could write these things down so you can look at them later.

As you go through the programme, try to think about how what you’re learning can help you reach your goals and do the things that matter most to you.

CFS (also called ME) is a long-term condition that causes fatigue (extreme tiredness), both in your body and mind. One of the most important symptoms of ME/CFS is something called "post-exertional malaise." This means feeling much worse after doing something which needs physical, mental or emotional effort. This feeling may last longer than you would usually expect.

What causes ME/ CFS?

ME/CFS can start for different reasons. Sometimes, it starts after an illness or infection. Other times, it can be triggered by emotional stress, surgery, or a big loss, like someone passing away. Sometimes there is no cause. There is no test for ME/ CFS. It can take months or even years to get a diagnosis.

Research has found that people with ME/CFS might have changes in their immune system, brain and nervous system, energy storage and hormones. It’s not clear if these changes cause CFS or if they happen because of it.

Our body systems usually work together to help us handle stress and keep us healthy. This is called "homeostasis." But with ME/CFS, these systems can get too sensitive and treat normal things, like standing up or taking a bath, as if they are big problems or a threat. This is called "dysregulation." This can cause symptoms like a racing heart or feeling fatigued from small changes in temperature.

The Autonomic Nervous System (ANS)

This system helps control how we respond to stress. It has two parts:

• The sympathetic nervous system gets us ready for action.

• The parasympathetic nervous system helps us relax and calm down.

In ME/CFS, the sympathetic system might be too sensitive.

This picture shows how the ANS controls many body processes, which is why people with ME/CFS can have many different symptoms.

What Are the Symptoms of ME/CFS?

The video below shows what it’s like for one person living with ME/CFS. However, it’s important to remember that ME/CFS can affect people in different ways. Some people may find everyday activities hard, while others may still be able to do most things.

https://youtu.be/aDblAnL-AaE?list=PLsKmNTWSs0VD_82MONRU15eTlkbZ1nxYp

Some common symptoms are:

• Fatigue
• Feeling very tired after exercise
• Pain
• Trouble thinking or remembering (sometimes called "brain fog")
• Sleeping problems
• Headaches
• Dizziness (especially when standing up)
• Fast heartbeat or feeling short of breath
• Sore throat
• Feeling anxious or sad
• Sensitivity to light or sound
• Allergies
• Sweating or feeling too hot or cold
• Stomach problems
• Sensitivity to certain medicines

Useful Resources

This guide explains more about how the body systems might get out of balance in ME/CFS BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf

Living with ME/CFS can make normal activities, like going to work, taking care of others, shopping, and even hobbies, really tough. For most people, it’s not only physical activity that makes them tired. Thinking hard, strong emotions or a bright or noisy environment can also cause fatigue.

Experts say that people with ME/CFS should not push past their energy limits. If they do, their symptoms can get worse. This idea is called staying inside your “energy envelope.” Some people also call it “spoon theory.” You can watch a video on this here.

https://youtu.be/XB8MrKHHkGU

Energy Management (Pacing)

Energy management or pacing means managing how much you do to avoid making your fatigue worse. It helps you take breaks or slow down to feel better.  You need to pace physical, mental, and emotional activity.

Boom and Bust Cycle

Sometimes, when you have more energy, you might try to do too much at once. This is understandable, but it can make you feel worse later. You may need to rest for a long time afterwards. This can lead to a pattern where you do a lot one day and very little the next day.
Over time, this can make your symptoms worse. This pattern is called the boom-and-bust cycle.

Finding your baseline

A big part of pacing is finding your "baseline." This is the amount of activity you can do without making symptoms worse. When you stay close to your baseline, your energy levels are more stable.

The picture below illustrates this.

How do I manage my energy?

There are three main parts to energy management

• Planning
• Pacing
• Prioritising

We will look at each of these in turn.

Planning

Different activities use different amounts of energy.  Activities can be physical, social, emotional, sensory, or mental.

A good first step is to think about the activities you do now and how much energy each one takes. The table below may help.

How much energy does each activity use?

Completing an Activity Diary

Keeping track of what you’re doing and how much can help you see where you need to slow down or take breaks. You can use an activity diary to keep track. The information you recorded above may help you.

How to Complete an Activity Diary

Write down what you do each day and how you feel. At first, you don’t need to change anything—just write it down. Once your diary is filled in, you can look at it closely. You might see some changes you can make to feel better. At the end of the page, you will find an activity diary template. You can use this or make your own. Follow the steps below to complete the diary.

1. ·  Date At the top of the page, write the date. This helps you remember what happened on each day.

 2. · Time of Day Split your day into morning, afternoon and evening or record hourly like on our example.

 3.  What Did You Do? Write down the type of activity you did during each part of the day, for example, getting dressed, going to work, attending a meeting , meeting a friend. Remember activity can be physical, mental or emotional or social. Remember to record rest and sleep.

 4. How Did You Feel?  You can categorise these activities as high, medium or low intensity depending on how much energy you need to spend. You can colour code them as in the example. You can even write a word or draw a smiley face to remember how you felt about that activity. It can help to record your fatigue level at the end of each day.

Below is an example of a blank activity diary to complete or you can make your own.

Below is an example of a completed activity diary:

Top tips for planning

• Spread out more demanding activities during your day and your week.
• Add rest breaks into your day, especially before and after tiring tasks.
• Do harder jobs when you feel your best.
• Try to wake up and go to bed at the same time every day.
• Keep things you use often easy to reach, like on the counter in the kitchen instead of in a high cupboard.

Activity

Try completing an activity diary like the one above for yourself for 2-3 weeks. Do you notice any patterns or anything you could change?

Reflect on any changes you have made – has it helped your fatigue?

In the last section, we talked about keeping your activity levels close to your baseline so your energy stays steady. Planning your day and week can help with this. Here are some more ideas to help you pace yourself.

Pacing tips

• Try doing an activity more slowly
• Change position – sit to prepare food instead of stand
• Use equipment to help e.g. long-handled cleaning aids or a trolley at the supermarket.
• Make a task simpler if you can.
• Break big jobs into smaller parts. For example, clean a little each day instead of doing it all at once.
• Take breaks often.
• Think about your environment – dimmer lights or changing the temperature may help you feel more comfortable.

Rest

Many people with ME/CFS do not plan enough rest during the day. Rest is good for both your body and your brain. It can slow your heart rate, help with digestion, and help you think more clearly. It is important to plan good, calm rest into your day.

Rest isn’t only about resting your body. You also need breaks from thinking hard, talking to people, strong emotions, and busy places. Watching exciting TV or scrolling on your phone may not be restful because your brain is still working.

If you find it hard to calm your mind, mindfulness can help. You could try short mindfulness videos like:

3 Minute Breathing Space Video

5 Minute Mindfulness Meditation

The mobile phone battery

Everyone finds different things restful. It can help to think of your energy like a phone battery. Some activities drain your energy quickly, and some activities help charge it up again. Harder activities need planning, so you don’t run out of energy. It’s important to make time for activities that help you feel rested.

Prioritising - Doing What Matters

When your energy is low, you need to think about what is most important to you (your values). This helps you spend your energy wisely.

Ask yourself

• What do I need to do and what do I want to do today – try to find the balance
• Does this really need to be done?
• Can someone help me?
• Can I say no? (This can be hard, but it helps save your energy.)

You can find more information on pacing and managing energy here Lift up your everyday - managing energy | RCOT .

Increasing Activity Levels

When your body feels okay and you know your baseline, you can slowly try to do a bit more. Only increase an activity by a small amount — no more than about 20%. For example, if you normally walk for 5 minutes, try 6 minutes next time. Then wait and see how your body feels.

 If you are trying to do more, you will need to increase slowly, normally over a number of months. It is not recommended to try to increase your activity level if you are still in the “boom and bust” pattern.  

People with ME/CFS can be active, but they must be careful not to do too much. Moving your body is helpful for strength and flexibility, but you need to balance activity with rest. Keeping a diary can help you see when you have done too much or when you can try a little more.

Barriers to Pacing

It’s hard to pace yourself sometimes because of family or work responsibilities, or because you feel frustrated or guilty. But it’s important to know that it’s okay to take breaks and not do everything all at once. Talking to others, like family or a therapist, can help.

Activity

Try some of the suggestions above – do they help you manage your energy better?

Sleep is important.  Sleep helps your body and your mind stay healthy. Many people with ME/CFS find sleep difficult. You might notice:

• It is hard to fall asleep
• You wake up many times in the night
• You wake up feeling tired, even after a full night’s sleep
• You nap during the day
• You sleep more than usual

Why You Might Have Trouble Sleeping

Feeling tired even after sleeping is common in ME/CFS. There are also other reasons why sleep can be difficult.

• Homeostatic Disruption: Things like drinking caffeine or taking naps can confuse your body about when it’s time to sleep.
• Hyperarousal (stress and anxiety): If you’re too worried or thinking too much, your mind stays awake and it’s hard for your body to fall asleep. Worrying about not sleeping enough is common – this can reinforce disturbed sleep.
• Circadian Disruption (sleep/wake cycle): This happens when your body isn’t used to a regular sleep schedule, for instance falling asleep or waking up at different times every day.

Top Tips For Better Sleep

• Don’t force it: If you can’t fall asleep after approximately 20 minutes, get out of bed and do something relaxing for 10 minutes, then try again. It’s important to think of your bed as a place to sleep.
• Avoid blue light: Phones and TVs have blue light that can make your body think it’s still daytime, which keeps you awake. Try to avoid them before bed or put devices onto ‘night mode.’
• Get comfy: Make your bed as comfortable as possible e.g. pillows, blankets, the right temperature (not too hot).
• Write things down: If you can’t stop thinking, try writing your thoughts down before bed, or try mindfulness meditation to calm your mind.
• Get sunlight: Try to get outside in the morning for sunlight and make sure your curtains block light at night.
• Get the timing right:  You will fall asleep more easily when you go to bed feeling sleepy — like when you are yawning or your eyes feel heavy — not just when you feel tired or worn out.

Other Helpful Tips

• Everyone is different: Some people are night owls, and some are early birds. Try to find a sleep schedule that works best for you.

• Food and drinks: Caffeine can keep you awake, so don’t drink it after 3 pm. Alcohol might help you fall asleep, but it stops you from sleeping deeply.

• Think about your naps: Try not to nap if it makes it harder to sleep at night. If naps help you save energy, try to keep them short — about 20 to 30 minutes.
• Try new things: You could try listening to calming stories, reading, or using smells like lavender to help you sleep.

Remember: Improving your sleep can take time, but small changes can add up to big improvements!

Further Resources

Here are some helpful links for more sleep tips:

• https://www.nhs.uk/every-mind-matters/

• Sleep Stories by Stephen Fry on YouTube
• Michael Mosely’s Program on Sleep

Activity

To help you understand more about your sleep, you can fill out the sleep questionnaire below:

Sleep Questions

Homeostatic Disruption (Things that affect how well you sleep)

• Do you take naps during the day?

• Do you sit or lie down most of the day without moving around much?
• Do you drink things like coffee, tea, soda, or other drinks that have caffeine, or use things like cigarettes or alcohol?
• Do you spend a lot of time in bed when you're not actually sleeping?

Your Body’s Clock (How your body knows when to sleep and wake up)

• Do you wake up at different times each day, even by an hour or more?

• Are you someone who likes staying up late and having trouble waking up early, or the other way around?

Worrying While Sleeping

• Do you spend a lot of time thinking or worrying when you’re trying to sleep?
• Are you worried about your sleep?
• Do you feel like you have to do certain things or follow routines to fall asleep or stay asleep?
• Do you feel stressed, upset, or frustrated when trying to sleep?
• Are you stressed because of school, home, or other things happening in your life?

Do your answers suggest there are any changes you could make in order to improve your sleep? Try these out over the next week but remember, changing your sleep takes time. Don't give up if you don’t notice changes straight away.

How Our Mind Affects Our Body

We have mentioned before that the way we think and feel can affect our health. Stress, worry, or feeling sad can change the way our body works and how we experience illness.

Here are some examples of how our mind affects ME/CFS:

• When we are calm, it is easier to concentrate. When we are upset, it is harder.
• Stress can stop us from sleeping well, which can lead to brain fog.
• Pain feels worse when we are sad or having a bad day, but not as bad when we are happy.

What is Stress?

Stress is our body’s way of dealing with danger. Long ago, it helped people escape wild animals, but now it happens for different reasons, like studying, work, or worries about family or money. Some stress can be helpful, like when we have a deadline to meet, but too much stress can make us feel tired and unwell.

Thoughts can cause stress too. If we think something bad might happen, our body reacts as if we are in danger. Over time, too much stress can make us feel exhausted.

Managing Stress with Mindfulness

We can’t always stop stress, but we can change how we react to it. Mindfulness means paying attention to what we feel right now, instead of worrying about the past or future.

Benefits of Mindfulness

• Helps calm the nervous system.
• Brings more awareness of what our body needs.
• Helps us enjoy small, happy moments.
• Uses less energy than trying to avoid bad feelings.

Some research shows that mindfulness can reduce stress and improve sleep, but there isn’t much research yet on ME/CFS. Mindfulness may not be suitable for people dealing with very strong emotions or serious mental health problems.

Mindfulness Activities

Here are some activities you can try:

• 3 Minute Breathing Space – A short breathing exercise. https://youtu.be/3oayZww48vA
• Notice 3 Things – Focus on three things around you to help feel present https://youtu.be/UsuY5-K3dXY

Try to make some time to practice these activities every day.

Balancing Our Emotions

We have three emotional systems:

1. Drive system – pushes us to achieve things.
2. Threat system – helps us respond to danger.
3. Soothing system – helps us feel safe and calm.

When we have a long-term condition, the threat and drive systems can take over and we may neglect the soothing system. For example, you might feel anxious when you're too fatigued to work or see friends, or you might push yourself to finish the housework even when you're really tired. If we have too much drive or threat, we can feel overwhelmed. This can make fatigue worse.

Doing calming activities, being kind to ourselves, and focusing on things we enjoy can activate the soothing system. This may help ME/CFS symptoms.

Senses Activity

Try this activity whenever you need to switch on your soothing system.

Write down things you like for each sense:

As you do this, notice how each thing makes you feel. For example, hearing birds sing might remind you of spring and make you feel relaxed.

Being Kind to Yourself

Being kind to yourself, sometimes known as ‘self -compassion’, also activates the soothing system.

Here is a video about being kind to yourself: Watch here.

Some examples of ways to be kind to yourself include:

• Talking to yourself as you would talk to a friend
• Making time for something you enjoy

Here is a link to more ways to be kind to yourself: Self-Compassion Practices: Cultivate Inner Peace and Joy - Self-Compassion

Activity: Try to practice at least one of the suggestions above every day.

Living with ME/CFS can affect how we feel and think. Sometimes, fatigue can make us sad, frustrated, or anxious, and those feelings can make our symptoms worse.

Here’s how living with fatigue affects us in different ways:

1. Thoughts and Feelings: Living with ME/CFS can make us feel upset or worried. These feelings can lead us to do things that make the fatigue worse. For example, we might push ourselves too hard when we feel frustrated, which can cause a flare up.  Some people with ME/CFS feel misunderstood by family, friends, or even doctors. This can be upsetting but getting a diagnosis can help people find better ways to manage their health.
2. Identity: Living with ME/CFS can change how we see ourselves. It might make us feel like we can’t do things we used to do, like work, spending time with friends, or doing hobbies we enjoy. This can make us feel isolated. But it’s important to remember the things that are still important to us, like our values, and try to do things that make us happy even if we can’t do everything we used to. 
3. Mental Health Conditions: Living with fatigue can make us more likely to feel depressed or anxious, and those feelings can make it harder to feel better.

Mental Health Support in Nottingham

If you need help with your mental health, there are many places you can go.

Talk to your GP. They can give advice and help you find the right support. They may give you medicine or send you to another service for more help.

Social prescribing. If you feel lonely, a social prescriber can help you find activities and groups to make you feel better. Your GP can refer you to one.

Talking therapy. You can ask for talking therapy through Notts Talk if you are struggling. Here is the link to refer yourself https://notts-talk.co.uk/

They offer different types of therapy to help with low mood, stress, anxiety and other issues. Talking therapy helps you understand your thoughts and feelings and learn ways to cope.

Further support is also available on the numbers below.

• Text Notts: A free text support service (Text 85258)
• Samaritans: Call 116 123 for free support
• Turning Point Nottingham: Call 0808 196 3779 for emotional support

In an Emergency

If you are feeling very low or that you may hurt yourself, it is important to get help straight away. These services can help in an emergency.

• Mental health Crisis team tel:+0808+1963779
• Samaritans 116 123
• Text Shout to 85258 for free 24/7 support. Shout: the UK's free, confidential and 24/7 mental health text service for crisis support | Shout 85258 (giveusashout.org)
• If you are in immediate danger, call 999 or attend A&E.

Remember, it's okay to ask for help when you're feeling down or struggling with fatigue. There are people who care about you and want to help you feel better!

How You Can Look After Your Mental Health

Taking care of your mental health is important, especially when you have ME/CFS. Here are some simple things you can try.

1. Activate your soothing system Practicing mindfulness, talking to friends and family, stroking a pet, being in nature and listening to music can all help you feel calm.

You can look at these links for more ideas:

How to Get Your Daily DOSE of Happiness — Mind My Peelings

BBC - The Social - Learn how to hack your happy hormones

Mindful Coffee Drinking | A Sensory Experience | Guided Meditation for Awareness & Appreciation

1. Do what matters to you  Society often asks, "What do you do?" instead of "What do you care about?". Even if you can’t do as much as before, you can still focus on your values (the things that matter most to you).

For example:

• If you like being kind, send a nice message to someone.
• If you value learning, you can read or watch educational videos.
• If you enjoy nature, you can listen to birds or sit outside.

Thinking about your values instead of what you can't do can help you feel better.

1. Eat well What you eat affects how you feel. When we eat well, we have more good bacteria in our gut. Scientists have found that this helps our mood. You can learn more about this later in the course. For now, consider what healthy swaps you could make.  See the following link for tips:

https://www.nhs.uk/healthier-families/food-facts/healthier-food-swaps/

1. Get quality rest Just like a phone, you need to recharge. Think about what helps you feel rested – look back at the battery analogy exercise. Keep pacing yourself and use the sleep tips you learned earlier in the programme.
2. Practice kindness – to yourself and others. Scientists have found that helping others boosts our feel good hormones. Even small acts of kindness such as sending a thank you card or smiling at a stranger can help. You can find out more here Kindness matters guide | Mental Health Foundation

Don’t forget to be kind to yourself too – try the self-compassion ideas in the previous section.

Making change

Change can be hard. The way we think can make a big difference. Watching the “Passengers on the bus” video can help you understand this. You can watch it here: https://youtu.be/yLroVwoPFW8

Activity: The 30: 3: 30 approach

This is a simple way to help your mind feel calm. It asks you to choose:

• A 30-second action you can use in an emergency to feel better
• A 3-minute activity you can do often
• A 30-minute activity that helps your wellbeing that you do at least weekly (it can be shorter if needed)

Click the link below to learn more and make your own wellbeing plan.

Microsoft Word - Ideas to help you cope and build your wellbeing using the 30-3-30 approach (2)

Thoughts can affect how we feel and behave.

What is a thought?

A thought is an idea or opinion. Thoughts aren’t always true or fair, but they can still affect how we act and feel. This can be a problem when we think negative things about ourselves or our health, because these thoughts can make us feel worse. Knowing that thoughts aren’t facts can help us decide how to respond.

It’s easy to get caught up in our thoughts and act without thinking. This can stop us from acting in a way that matches our values.

Activity

Try the activity below.

What would you think if a friend walked past you without saying hello? How would this make you feel and act?

Now, think of another way to view the same situation. Would that change how you feel or act?

The hot cross bun

To understand more about how thoughts can affect our feelings and actions, we can use the hot cross bun diagram. This video explains more https://youtu.be/Sm-dmGBQ1pg

Activity

Imagine you have to cancel a social event because you are having a flare up of your symptoms. Try to fill out the hot cross bun diagram by thinking about how you would feel, what you might think, and how you would act in this situation.

Think about what might happen to your values if you focus too much on your thoughts. It can be hard to change what we think, but we can change how we react to those thoughts. For example, you have a choice whether you decide to rebook the social event.

Thinking Styles

We all have ways of thinking that we get used to. Sometimes, these ways of thinking aren’t very helpful.

Here are some examples of thinking styles that people often use.

This table helps show how some ways of thinking can make us feel worse, even when they’re not really true.

How to Get Unstuck from Unhelpful Thoughts

Sometimes, we get stuck thinking the same way over and over. Sometimes our thoughts can make us feel worse. We can feel stuck in them or believe they are 100% true. But we can change how we respond to our thoughts. Here are some ways to do that:

• Notice your thoughts – Pay attention to what you're thinking.
• Label them – Say to yourself, “I’m having the thought that…” or “here’s a painful thought” or “here’s a judgement” or “here’s the failure story”
• Thank your brain – Your brain is just trying to protect you. Remember that your mind is just doing what it was designed to do – problem solve and avoid danger.
• Ask yourself: Is this thought really true? Is it fair? Is this thought helping me? If not, maybe you can let it go.
• Imagine a friend had this thought. What advice would you give them?
• Try mindfulness. Focus on your breathing instead of your thoughts.
• Say your thoughts out loud (maybe in a silly voice!) or write them down. This can help you see them differently.
• Pay attention to your thinking style. Label it and take a moment before reacting.
• Try the "Leaves on a Stream" meditation. Imagine your thoughts floating away like leaves on a river. Leaves on the stream exercise - Contextual Consulting

Watch this video to understand better how we can get hooked by unhelpful thoughts: Monsters on a Boat

Communication

It can be difficult to ask for help but it can make life easier.

The best way to communicate your needs is calmly, confidently, and respectfully. This is called assertive communication. It helps others understand what you need without arguments.

Tips for Clear Communication

• Use "I" statements. Say "I feel… because…" or "I need…" instead of "You always…"
• Think ahead. Plan what you want to say. It might help to practice or write it down first.
• Pick the right time. Have big conversations when everyone is calm and focused.
• Ask, don’t assume. If you’re unsure what someone is thinking, just ask! And don’t expect people to read your mind—tell them what you need.
• Be clear and confident. Say what you mean without being rude. Keep your body language and voice calm.
• Practice saying "no" without feeling bad. You don’t always need a long excuse. It’s okay to set boundaries.
• Be flexible. Sometimes, working together means finding a middle ground.
• Give compliments! If someone is helpful, let them know. It makes good communication easier.
• Think about your energy. Not every relationship is worth your time. Choose who to focus on.

Activity

Over the next week, pay attention to your thoughts and how you react. Are they helping or making things harder? Try some of the techniques above and see what changes.

How Fatigue Affects Eating and How You Feel

Living with fatigue can make it hard to eat well and take care of your body. Fatigue, pain, stress or nausea can affect your eating habits or make it harder to prepare nutritious food. Medications you take might also make you feel nauseous, change how hungry you feel, or affect your stomach and bladder.

When we’re tired, we often eat unhealthy foods that are high in sugar or fat. Nausea can make you not want to eat much at all, and sometimes your mood can affect what you want to eat too. This can make it hard for your body to feel its best. But eating regularly and choosing healthy foods can help your body feel better and reduce stress.

Making Healthy Eating Choices

When it comes to what to eat, there’s a lot of advice out there, and it can be confusing.  You can learn more here: NHS Healthy Eating Guide

Drinking 6-8 glasses of water a day is important, especially if you get dizzy when you stand up.

Changing How We Eat Can Feel Hard

Making changes to how we eat when we’re experiencing fatigue can seem really tough. But it can be helpful to think about small changes you can try, just like you’d suggest to a friend. For example, if you’re tired all the time or your body hurts, cooking can be difficult. People who live with fatigue have come up with helpful tricks like:

• Cooking big batches of food to store for later
• Using pre-chopped frozen vegetables
• Use pacing principles when preparing food
• Sit down to prepare food when possible
• Use internet shopping to save energy
• Using kitchen gadgets that make cooking easier (like air fryers, slow cookers or choppers)

If you’re not sure where to start, try searching for “kitchen aids to reduce effort” on the internet for ideas. You can even check out this website for more helpful kitchen tools: Essential Aids.

How Food Affects Mood

What you eat can also affect how you feel. Eating healthy foods can make your mood better because it helps your gut (your stomach and intestines) stay healthy. Your gut is full of tiny bacteria, and these bacteria can help your brain and body feel good. Eating good food helps keep these bacteria healthy, which helps your whole body work better.

If you have stomach problems, like nausea or an upset stomach, some people find it helpful to drink water regularly or eat smaller meals more often. If eating is really hard, talking to a doctor about seeing a dietitian can help.

What Do Scientists Say?

Doctors and researchers have found that people with ME/CFS often have different gut bacteria than people without these conditions. Eating better and taking care of your gut might help reduce digestive discomfort and make you feel better overall. Your gut and your brain are best friends—they talk to each other all the time. This is called the gut-brain axis. If your gut bacteria are not happy, they can send messages to your brain that make you feel worse. This is called dysbiosis, and it can happen if you eat too much junk food or don’t get enough fibre.

Here are some simple things that can help your gut bugs stay happy—and maybe help you feel better too:

• Eat more fibre: Foods like fruits, vegetables, oats, and beans feed your good gut bugs.
• Try fermented foods: Yoghurt, kefir, and sauerkraut have helpful bacteria called probiotics.
• Avoid too much sugar and processed food: These can upset your gut bugs.
• Drink water: It helps your tummy work better.

More about the gut microbiome

Watch the videos below to learn more about the gut microbiome and how to eat to support it.

How the food you eat affects your gut - Shilpa Ravella

Gut Microbiome Video

How to Save Money While Eating Well

Food can be expensive, especially with the cost of living going up. To save money, try cooking in big batches and using frozen or canned foods, which are usually cheaper. You can find lots of budget-friendly recipes online, like these from Jack Monroe: COOKING ON A BOOTSTRAP – by Jack Monroe, bestselling author of 'A Girl Called Jack'

Medication

There isn’t a medicine that cures ME/CFS or treats fatigue, but some medicines can help with symptoms like pain. You should speak to a health professional if you need advice about medication. People with ME/CFS can be more sensitive to medicine.

Supplements

There are no special supplements for ME/CFS, but vitamin D is recommended. The government recommends all adults in the UK take a supplement containing 10 micrograms of vitamin D daily in winter, and all year if you do not go outside often.

Activity

Consider whether there are any changes you would like to make to your diet.

Managing Flare-Ups

A flare-up is when your symptoms get worse for a short time. It can make you feel tired, sore, worried, or stressed. It might also stop you from doing things you enjoy. But remember, if you feel more pain, it doesn’t mean you have hurt yourself.

What Can Cause a Flare-Up?

Flare-ups can happen for different reasons, and sometimes the cause isn’t clear. Here are some common triggers:

• Doing too much
• Not getting enough rest
• Being sick or having surgery
• Feeling stressed or upset
• Changes in routine
• Not sleeping well
• Too much noise or bright lights

How to Manage a Flare-Up

You might not be able to stop flare-ups completely, but you can have a plan to help you cope. Everyone is different, so you need to find what works best for you. Some helpful strategies include:

• Resting more and doing less
• Pacing yourself
• Practicing relaxation or mindfulness
• Doing things that calm you
• Staying in a quiet, dimly lit space
• Limiting social time if needed
• Asking for help
• Being kind to yourself
• Slowly getting back to normal activity when you feel better

Having a plan can make flare-ups easier to handle. You can fill out a flare-up plan to help you stay on track when you don’t feel well.

Here is an example of a flare-up plan:

Noticing what causes your fatigue to get worse and spotting early signs can help a flare-up happen less often and not be as bad. You might want to fill out this worksheet to help you. relapse_worksheet.pdf

Here are some extra ideas around managing flare-ups:  13. Minimizing Relapses | ME/CFS & Fibromyalgia Self-Help

Reflecting on Your Flare-up Plan

Once you start feeling better, it’s good to think about what helped and what didn’t. This way, you can change your plan if needed. You might also want to take some time to write down or think about how you felt.

Here are some questions to help you:

• What might have caused this flare-up?
• What helped me feel better?
• What didn’t work so well?
• Were there any good parts?
• What can I do differently next time?

Activity

Complete your own flare up plan using the example above as a guide.

Think about your own flare-up triggers. Can you make any changes to limit the chance of a flare-up happening?

Further Support

Talking to other people who have ME/CFS can help you feel less alone. It can also give you support. You can find links to local groups and organisations for people with ME/CFS below.

• ME/CFS & Fibromyalgia Self-Help
• The ME Association
• Local Support Groups - The ME Association

If you are struggling to stay at work or return to work, the information below may be helpful.

• An essential guide to employment issues for people with ME/CFS or Long Covid - The ME Association

Moving Forwards

Congratulations! You have reached the end of our online ME/CFS fatigue management programme. We hope you have found the information and activities helpful. Your clinician will be happy to answer any questions you may have.

Keep trying the ideas from this programme - they can help you enjoy life even with fatigue. But remember, change takes time. Above all, be kind to yourself!