Self-help information for patients

Introduction

Being diagnosed with ME / Chronic Fatigue Syndrome (CFS) can feel confusing as there continues to be much debate around what causes it and what maintains it. This information has been put together by the Lincolnshire Specialist ME / CFS Team and is based on many years of both practice based and evidence based experience treating and enabling many young people and adults to improve their health and levels of functioning. 

Our hope is that this booklet will give you some basic information around the current understanding we have about the condition prior to starting a treatment programme. If you can stabilise your symptoms by implementing the ideas in this booklet it will enable you to get the most benefit from the full treatment programme when you start this with a therapist. The treatment programme goes in to more depth, so this booklet is only aimed at giving you some positive initial information and strategies to help you manage your health more effectively. 

A condition with many names

Myalgic Encephalomyelopathy (ME), Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue Syndrome (CFS) and more recently the American term SEID (Systemic Exertion Intolerance Disease) are some of the names used to describe a syndrome (i.e. where you experience a number of symptoms). A primary feature of all of these names is excessive fatigue. ME / Chronic Fatigue Syndrome is the generally preferred term. It is officially recognised both by the World Health Organisation, NICE and the Equality Act (DoH 2007). 

ME / CFS affects people in different ways and no two people experience the illness in the same way. The main common feature is persistent physical and/or mental fatigue, which differs from normal tiredness. It is not adequately relieved by rest or sleep and is usually out of proportion to the activity undertaken. 

A range of other symptoms often accompany the fatigue. These include muscle and/or joint pain, headaches, swollen glands and recurring infections such as sore throats. Some people have feelings of dizziness and temperature fluctuations.

There is frequently difficulty with concentration and short term working memory and many people experience problems with their sleep, either struggling to stay awake or feeling” tired but wired” and unable to switch off. 

People often report vivid dreams and generally wake feeling un-refreshed. Many people also describe gut problems such as Irritable Bowel Syndrome (IBS) and can develop sensitivities to some foods and medicines. 

Currently there is no specific diagnostic blood test for ME / CFS, however there is a clear protocol that is used to confirm the diagnosis. A diagnosis is made by excluding around 40 other conditions that cause fatigue. Your GP will have arranged a variety of blood tests, including liver function tests and routine biochemistry tests, prior to attendance at our specialist clinic, in order to rule out other likely causes of fatigue.

How did I get ME / CFS?

There are some essential and connected structures in the body which together are called the Hypothalamic Pituitary Adrenal (HPA) axis. These are vital in managing and maintaining the body’s homeostasis(3) (the body’s ability to keep itself in balance with hormonal regulation and central and autonomic nervous system regulation). Fatigue and pain in ME / CFS is probably driven by a central sensitisation of the central nervous system (CNS). 

Below is a working model of ME / CFS that can be used to explain some reasons why CFS/ME may develop and how the condition is maintained:

Screenshot 2025-03-25 165145.png

Quite often people report an illness (such as flu or glandular fever) or surgery or a major life stress as triggering ME / CFS. This is understandable as these things can cause a change in the body’s systems which, especially if severe or if there are other pressures, makes it difficult for the body to re-regulate itself again. Continuing to feel unwell or fatigued causes ongoing stress and worry, and further contributes to a vicious cycle that can be difficult to escape from alone. 

Knowledge is power! Your understanding of the possible factors influencing and maintaining ME / CFS is vital. The following are some initial strategies we know to be helpful in getting you back in control of your health and wellbeing.

Coping with setbacks

“If you fall down 9 times but get up 10… you’re doing ok.”

Most people with ME / Chronic Fatigue Syndrome will experience setbacks or flare-ups. There can be times when symptoms worsen for a period of time. During these times it can be difficult to maintain your levels of activity.

Different things will provoke setbacks, and they may last for varying lengths of time. Each person will have different ways of dealing with a setback. We would encourage you to become aware of the things that provoke a setback for you, and to develop a plan for coping with a setback when it happens. Do not blame yourself, be kind to yourself and give yourself time to figure out what might help. Setbacks may happen; think of it as a problem to be solved. 

What provokes a setback? 

Setbacks don’t always have clear-cut causes, but there are a number of things which can contribute to one:

Overdoing it (physically, mentally, emotionally or socially). This may be the result of taking on too much, or simply as a result of doing one activity for too long. Setbacks can be triggered if you are frequently in a boom/bust pattern. 

Stress - A period of physical, mental or emotional stress in your life may provoke a setback. Be aware of those things that upset you and spot the signs that you are becoming unduly stressed. Stress management strategies may be especially helpful at these times. 

Periods of illness - Following a bout of illness, you may be more prone to a setback. Remember to give yourself time to recover from the illness and then gradually restart activities and exercise by pacing yourself.

Low mood/seasonal factors - Many people find that there is an interaction between their frame of mind and their energy levels. Remember energy and emotion go hand in hand. The lower light and grey days can impact on our mood and in turn on energy levels. Exposure to natural daylight, even in winter, or via the use of a light lamp can help.

Not all these factors apply to everyone. However, taking time to reflect and become aware of the possible factors that may cause your setbacks can be useful to help you work out how to best avoid or minimize these factors.

Even with the best of planning, it may be impossible at times to avoid a setback. But it can be a valuable opportunity to reflect and learn from what may have triggered it. Remember knowledge is power and our body is always trying to give us signals to get us to help it. Maybe by sitting back and quietly reflecting on what happened you might find another piece of your body’s complex jigsaw puzzle of health and wellbeing.

Boosting energy and wellbeing

The following are some reminders of useful strategies that may help: 

Relaxation: Remember the importance of proper, recuperating and restorative relaxation within your daily routine. Try a variety of relaxation techniques to see what you like best.

Activity: It’s tempting to stop completely when you are fatigued - don’t – try to get a balance and keep the body moving. Pace your daily activity (mental, physical and emotional) as best you can. Try to get outside at least once a day.

Prioritise: Put your energy into the most important areas of your life first. Try to keep some energy each day to do activities you enjoy. 

Compromise: Are you asking too much of yourself at present? Don’t be afraid to step back and reconsider your expectations during a setback. Remember to recognise what you are achieving! 

Socialise: If you’re very tired, it’s easy to feel like isolating yourself. Remember that being in touch with someone can be helpful, so what about giving someone a ring, or inviting a friend round? 

Pamper: If the going is tough, pace yourself and give yourself a break. If a massage or relaxing shower or bath helps, why not?

Thinking: Remember the way we think influences how we feel. In the midst of a setback it is easy to dwell on what’s not ok. Try to be aware of this, and try out different ways of thinking that are kinder to you and encourage you to know this will pass.

Not all these strategies will apply to you, and you may have developed some additional ideas for successfully managing or reducing the length of a setback. We hope that the information in this booklet enables you to start thinking of how you can start to stabilize your health and well-being. The subsequent treatment programme we offer can help you to then learn how to safely increase your levels of functioning.

Contact us

To get in touch with the Lincolnshire ME/CFS Service, please email lpft.lincscfs-meservice@nhs.net or call 01476 464046.

Useful websites

Action for ME
Charity run for people with ME/CFS. Information and benefits advice.
www.actionforme.org.uk

The British Association for ME/CFS
www.bacme.info

Moodzone
Practical information, interactive tools and videos from the NHS to help you look after your mental health and avoid common problems like depression and anxiety.
www.nhs.uk/conditions/stress-anxiety-depression​​​​​​​

Get self help
Practical self-help for managing stress, worry and low mood.
www.getselfhelp.co.uk

National Institute for Health and Care Excellence (NICE) guidelines for ME/CFS
www.nice.org.uk


If you would like this leaflet in another format, such as Braille, large print or audio, please contact the Communications team at lpft.communications@nhs.net.

Every effort has ben made to ensure that the information in this leaflet was correct at the time of print. However, changes in law may mean that in time some details in this leaflet may be out of date.

Anyone using our services will be treated with dignity at all times and their faith and cultural needs will be accommodated where practically possible.

The Trust is fully compliant with the Data Protection and Confidentiality: NHS Code of Practice requirements.

Published May 2022