ME ASSOCIATION FREE LITERATURE

A range of literature that you can depend upon. Written by Dr Charles Shepherd, other advisers, and topic experts…

What we offer

For people affected by – or with an interest in – ME/CFS and Long Covid.
Reliable information on a full range of topics:
- From Covid-19 – Long Covid
- From ME/CFS – Comorbidities
- From Benefits – Diagnosis
- From Symptoms – Management
- From Diet – Vitamins.
Written by specialist advisers and topic experts.
Regularly reviewed and updated.
Available to view and download for free!
Membership, Books, Goods and Clothing can be purchased via the website shop.

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Awareness (15)

Causation – What do we know about the causes of ME/CFS?

Despite being subject to uncertainty and continuing medical debate, we review the evidence for causation and consider the physical abnormalities that reinforce the view that there is an underlying disease process in ME/CFS.

CPD Training with MIMSLearning

This poster explains the CPD training course from MIMSLearning that has been designed to help healthcare professionals learn more about the 2021 NICE Guideline on ME/CFS.

CPD Training with StudyPRN

This poster explains the CPD training course from StudyPRN that has been designed to help healthcare professionals learn more about symptoms, diagnosis, and ongoing care for people with ME/CFS.

Explaining ME/CFS to Other People

We consider just how much of an added burden it can be when others in your life do not understand ME/CFS, and we examine ways in which communication can be improved.

Go the Extra Mile for ME!

This leaflet summarises the ways in which you can help us to reach more people with ME/CFS and Long Covid. Use it to inspire your own fundraising activities! Tony Britton (Senior Fundraising Consultant) is here to help you with ideas and to plan an event.

Leaving a Legacy

It is never too early to write a will, and including a legacy to the ME Association means that we can continue with our work, helping others, and investing in biomedical research to pursue effective treatments and a cure.

It can be difficult to face up to the idea that we won’t be around forever: that one day we won’t be here anymore. But thinking about what happens afterwards, about the legacy you want to leave, and about the difference you could still make, can be a very positive experience.

M.E. Hurts!

This leaflet can help to raise awareness. It carries factual information and comments from people with ME/CFS and their loved ones, who explain what it feels like to have this neurological disease.

ME Connect – The Support and Information Service

ME Connect is here to listen, to validate, and empathise with any issues you might be facing. The service is staffed by a fully-trained team, and is confidential. It offers a telephone helpline (available 365 days a year), email, and social media private messaging.

Membership – Excellent Reasons to Join!

A leaflet that provides some excellent reasons to become a member of the ME Association. Please also refer to the Membership page of the website. We look forward to welcoming you to the community!

Image of selection of images of the ME Association campaign posters

Poster Pack: ME/CFS & Long Covid

A selection of 5 posters that can help raise awareness of ME/CFS and Long Covid. If you want to share them virtually or print them youself, you can select the download option at no cost (PDF).

If you require them as hard copies, we ask for just £5 to cover the cost of postage and they can be ordered here

Primary care infographic for healthcare professionals

A comprehensive infographic with expert information from Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) to help primary healthcare professionals with diagnosing ME/CFS.

It contains vital information regarding suspecting ME/CFS, diagnosis, differential diagnoses, key symptoms, investigations, and information relating to NHS specialist referrals.

N.B. The ME Association always has medical education under consideration and we are continually looking into finding the best ways to reach healthcare professionals.

Recognise ME – Leaflet 1

A PDF copy of one of the two leaflets that is currently being displayed in around 3,000 GP surgeries around the UK, as part of the ME Association's Recognise ME campaign.

Recognise ME – Leaflet 2

A PDF copy of one of the two leaflets that is currently being displayed in around 3,000 GP surgeries around the UK, as part of the ME Association's Recognise ME campaign.

Recognise ME – Poster

A PDF copy of the poster that is currently being displayed in around 3,000 GP surgeries around the UK, as part of the ME Association's Recognise ME campaign.

The ME Association: What we do and why we do it!

We have been providing expert help since 1980. We understand the challenges faced by people with ME/CFS, PVFS, and Long Covid, and believe that nobody should struggle alone. We provide support and information, we campaign, and we invest in medical research. We're here for you!

Benefits (10)

Benefits & Tax Credits – An Introduction

Applying for benefits and knowing which might be appropriate in your situation can be confusing. This leaflet will help you understand what options are available.

Carer's Allowance

We explain all you need to know about Carers Allowance. The benefit is intended to provide financial help to someone who regularly spends at least 35 hours a week caring for someone with a disability. Visit GOV.UK for the latest information.

Claiming Benefits – Top Tips

If you’re faced with the daunting task of completing an application for Employment and Support Allowance, Personal Independence Payment or Universal Credit – pause a while and read these top tips!

Disability Rating Scale

We have produced a Disability Rating Scale that expands on the illness severity definitions recommended in the NICE Guideline on ME/CFS. It is more detailed and relevant, can be used to explain your current situation to others, in medical or benefit discussions, and as an aid to monitoring progress.

IMAGE DESCRIPTION: Image of a doctor writing a letter as medical evidence. With an overlay of an image of the benefit guide's cover (bottom left) and the ME Association (bottom right).

ESA & PIP – A Guide to Reconsiderations & Appeals

This guide takes you through a mandatory reconsideration of the decision made about your benefit application. It also explains how you can make a formal appeal to challenge the DWPs decision.

ESA & Universal Credit – A Guide to Applications

This guide takes you through the process of applying for Employment and Support Allowance and Universal Credit. It is relevant to people with ME/CFS and is a must-read if you are considering an application.

Personal Independence Payment (PIP) – A Guide to Applications

This guide contains examples that are relevant to people with ME/CFS (and Long Covid) and will help you or your representative make a good application for this often essential and non-means-tested disability benefit.

Personal Independence Payment (PIP) Terminology Guide

This free leaflet helps explain the often confusing terms used by the Department of Work and Pensions when making an application for PIP. The content is available in the main booklet: PIP - A Guide to Applications.

Template: Blue Badge Applications

This letter provides background information on the classification, severity and prognosis/permanency of ME/CFS in relation to a Blue Badge disabled parking application.

Universal Credit Explained

We try to explain a complicated benefit and provide helpful tips relevant to people with ME/CFS (and Long Covid) when making an application. See also ESA/Univeral Credit - A Guide to Applications.

Carers and social care (9)

Blue Badge Scheme – An Introduction

We provide an overview of the blue badge parking scheme and explain how you can make an application. Also included is a letter you can use to support an application.

Care and Support Plans

We examine the potential difficulties establishing ongoing care from the NHS. We feature a real-life example, include the recommendations for care and support plans and regular reviews in primary care taken from the NICE Guideline on ME/CFS.

Carer's Allowance

Caring for a Person with ME/CFS

Caring is vitally important but it can be quite isolating and, if you are new to caring, it can be hard knowing what to do. We understand the difficulties of being a carer and are here to help.This newly updated (July 2024) comprehensive booklet considers the well-being of carers, what might be involved as part of caring for someone with ME/CFS , and the kind of help that might be necessary, plus the booklet includes personal stories.

Disability Aids, Adaptations, and Social Care

We consider disability aids and home adaptations, recommendations from the NICE Guideline on ME/CFS, NHS and social care provision, the disabled facilities grant – and helpful tips to help you achieve more independence.

Disability Rating Scale

Severe ME/CFS: Helping You Cope

In this leaflet, we talk about severe ME/CFS - the symptoms, some thoughts about management, how you can explain your illness to family and carers – together with the kind of help that may be available. You might also like to review the NICE Guideline on ME/CFS.

IMAGE DESCRIPTION: A person sat in a wheelchair in their home. With an overlay of an image of the first page of the template letter (bottom left) and the ME Association (bottom right)

Template: Disability Aids, Adaptations & Social Care

This letter provides supporting evidence for the provision of disability aids such as wheelchairs, home adaptations and appliances for people with ME/CFS. It can also be used to help obtain aid from social care services.

Template: Disabled Person's Bus Pass

A pro-forma letter offering support for someone with ME/CFS applying for a disabled bus pass.

Children and Young People (3)

Diagnosis and management in young people: a primer

This 61-page booklet was compiled by international experts including Dr Nigel Speight, Hon. Paediatric Adviser to the ME Association. It provides the information necessary to understand, diagnose and manage the symptoms of M.E. in children and young people.

MEA Children and Adolescents

ME/CFS has been reported in children as young as 5, and there appears to be a peak of onset around 13 to 15 years of age. This 6-page chapter has been taken from the 2022 Clinical & Research Guide and we review what is known about ME/CFS in young people and consider the research evidence.

MEA Severe ME in Children

Dr Nigel Speight - Hon. Paediatric Adviser to the ME Association - published an 8-page review about the presentation of severe ME/CFS in children. He considers the approach that should be adopted by doctors, and what can be done to provide appropriate care and support.

Covid-19, Long Covid and ME/CFS (4)

Covid-19: Long Covid & ME/CFS

The original booklet that reviewed the overlaps between Long Covid and ME/CFS, and explained how people with Long Covid can safely learn to manage their symptoms and any continuing disability. Please note: 'Long Covid & ME/CFS: Are they the same condition?' has updated some of this information.

Covid-19: Reducing Risk of Infection

Please note that while much of this information is relevant today, it was written during the Covid pandemic. We are now in a situation where it looks as though the risk of infection could rise again. When we are clearer about the level of risk from Covid-19 and its variants, we will update the booklet (November 2023).

Long Covid and ME/CFS – Are they the same condition?

This is a review of the key clinical and causative overlaps that occur between the two diagnoses. It explains how existing knowledge about the management of key symptoms in ME/CFS can be applied to help people with Long Covid until such time as effective treatments are available.

Template: Covid Autumn Booster Vaccine (2024)

This template letter can help you obtain a Free NHS Autumn Covid Booster vaccination if you have ME/CFS and decide to have one.

More background information available: https://meassociation.org.uk/2024/10/the-me-association-2024-autumn-covid-booster-information/

Diagnosis (19)

Blood & Organ Donation in ME/CFS

We explain why people with ME/CFS cannot donate blood but how they can still donate organs after death. We also consider the importance of blood and organ donation in general.

Blood Tests Explained

We take an in-depth look at what blood tests should be taken to ensure your diagnosis is correct. Testing your blood is essential to rule out other illnesses that can cause similar symptoms.

Diagnosing ME/CFS

We explain why an early and accurate diagnosis is so important and review the NICE Guideline on ME/CFS. We examine core symptoms, clinical investigations and blood tests, and other explanations for persistent symptoms.

Disability Classification & Illness Severity Definitions

We examine illness severity, explain how ME/CFS is officially recognised as a neurological disease and disability, and provide a useful disability rating scale that can help you explain your disability to others.

Disability Rating Scale

Doctors – How to Establish a Good Relationship

We explain what to expect from your doctor and how you can work to ensure a supportive relationship. You might also like to review the NICE Guideline on ME/CFS whose recommendations are now being applied to health and social care services.

Fibromyalgia & ME/CFS

We consider the similarities and differences between Fibromyalgia and ME/CFS. Healthcare professionals can still be confused by the two conditions and we hope this information will make the distinctions clear.

Forward-ME Position Statement: Spinal Surgery and ME/CFS

Forward-ME was aware that in 2020 major surgery to address possible spinal pathologies in patients with ME/CFS became a topic of interest for some people in the patient community. In a statement dated 30th September 2020, they provide their position on this subject which is fully supported by the ME Association.

Hospital Support Pack

This pack was designed to help you explain the care you need when going into hospital and features references to the NICE Guideline on ME/CFS. It was jointly produced by the 25% Group, AfME, BRAME, and the ME Association in May 2024.

Interstitial Cystitis and ME/CFS

Interstitial cystitis is a poorly understood bladder condition that causes uncomfortable symptoms and seems to be more common in people with ME/CFS.

Just Diagnosed? We're Here to Help!

Written for people recently diagnosed with ME/CFS, we aim to provide answers to some of the questions you might have about the condition, tips for management, and where you can find medical help. You might also like to review the NICE Guideline on ME/CFS.

Lyme Disease: The Facts

In this leaflet we review the facts about Lyme disease. It is a serious infection that is spread to humans by tick bites. Chronic Lyme disease, while controversial, also displays similar symptoms to ME/CFS.

ME/CFS/PVFS – Your Questions Answered

We explain some of the terminology you are likely to encounter and help address the more commonly asked questions about Post-Viral Fatigue Syndrome (PVFS) and Myalgic Encephalomyelitis or chronic fatigue syndrome.

Menopause – Overview, Hormone replacement therapy/HRT and female hormone research in ME/CFS

We consider all aspects of menopause including diagnosis, symptoms, and treatments, and discuss the effect it can have on women with ME/CFS.

Neurological – Is ME/CFS a Neurological Disease?

We believe that Myalgic Encephalopathy (M.E.) is the most suitable name for the disease at this time. PVFS/ME/CFS are supported as diseases of the nervous system in the WHO ICD-11 and recognised as such by the NHS and UK Government.

Premenstrual Syndrome (PMS)

PMS is a collection of symptoms that appear every month around the time of a woman's period. We review what is currently known about PMS, how it can overlap with ME/CFS symptoms, and the various treatment options that are available.

Primary care infographic for healthcare professionals

A comprehensive infographic with expert information from Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) to help primary healthcare professionals with diagnosing ME/CFS.

It contains vital information regarding suspecting ME/CFS, diagnosis, differential diagnoses, key symptoms, investigations, and information relating to NHS specialist referrals.

N.B. The ME Association always has medical education under consideration and we are continually looking into finding the best ways to reach healthcare professionals.

Prognosis, Permanency & Quality of Life

We consider what to expect from a diagnosis of ME/CFS in terms of disability, improvement, recovery, and quality of life, based on research evidence and expert medical opinion.

Thyroid Disease and ME/CFS

We examine thyroid disease, review the symptoms and overlap with ME/CFS, the testing that can be done, and the treatments that are available.

Diet and Nutrition (5)

Alternative and complementary approaches

Due to a lack of any effective treatment in ME/CFS, it’s not surprising to find that many people turn to the alternative and complementary (ACM) health sectors for help with their symptoms. This comprehensive booklet covers a wide range of therapies and highlights treatments where there is good quality evidence to demonstrate that they are both safe and effective.

Diet and Nutrition

We examine the role of diet, how it can help to improve health when suffering from ME/CFS and Long Covid and ways we could improve what we eat and how we eat it. We consider malnutrition and how essential nutrition should be provided when severely or very severely affected. And, we share diet trends and tips and answer commonly asked questions from the patient community.

Food Fact Sheet: Long Covid and Diet

This leaflet is written by the Association of UK Dieticians (BDA.uk.com) and the ME Association's Hon. Dietetics Adviser, Sue Luscombe. It covers advice on foods that can be helpful for those with Long Covid.

Food Fact Sheet: ME/CFS and Diet

Nutrition Assessment & Malnutrition

We review the importance of nutrition and the dangers of malnutrition, especially in people severely and very severely affected by ME/CFS.

Education and Employment (5)

Employment Issues

An essential guide that features employment law, returning or continuing to work as a disabled person, reasonable adjustments, sickness absence, leaving work due to ill health, national insurance, benefits, ill-health early retirement and pensions, reasonable adjustments, termination of employment and unfair dismissal.

Pensions – Obtaining an Ill-Health Pension

We consider the key points in applying for early retirement on the grounds of ill-health and examine prognosis and permanency in ME/CFS.

Template: Examinations & ME/CFS

This letter summarises the special arrangements that may need to be used so that students with ME/CFS can make the best use of their potential when taking examinations.

University & How to Survive by Emily Bailey

This comprehensive guide to surviving at university with ME/CFS is based on Emily's own experiences and uses her own photographs.

University & M.E. by Pippa Stacey

This leaflet explains how someone with ME/CFS can make a successful start to their time at university. Pippa has also written a book on the subject.

Emotional Health (7)

Anxiety & Panic Attacks – Your Questions Answered

We explain what causes anxiety and panic attacks, why you might get anxious, what you can do to help yourself, and when to seek help from a medical professional.

Counselling – Your Questions Answered

We explain counselling and how therapy can help should an independent professional be needed to work through the understandable emotional problems that can affect people with ME/CFS and Long Covid and those who care for them.

Depression – Antidepressants & Other Treatment Options

We explain why suffering from depression is completely understandable when living with ME/CFS and consider the treatment options that are available.

Emotions – Managing Emotions in ME/CFS

In this booklet, we explore some of the emotions that people with ME/CFS may experience and consider general coping strategies to help manage mental health.

Menopause – Overview, Hormone replacement therapy/HRT and female hormone research in ME/CFS

We consider all aspects of menopause including diagnosis, symptoms, and treatments, and discuss the effect it can have on women with ME/CFS.

Personal Relationships & Intimacy

Intimate relations can be important, but among those with ME/CFS or Long Covid they can be a challenge. We explore the issues and provide real-life experiences, which might help you to discuss the topic with your partner. Warning: Adult Content.

Stress & How to Handle It

We discuss the understandable effect that stress can have on people with ME/CFS, and we the treatment options that are available.

Management (27)

A-Z of Symptom Management

We summarise how drugs, self-help strategies, and therapies can be used to manage some of the most common symptoms in ME/CFS.

Alternative and complementary approaches

Anaesthesia and ME/CFS

Jointly produced by the Royal College of Anaesthetists, ME Association and PwME, this leaflet aims to provide people who need surgery and an anaesthetic or sedation with information about what they might expect. A short-form summary of this leaflet is also now available. Surgery and anaesthetics were covered in a Podcast from the College, with Dr Krige, Dr Shepherd, and Helen Baxter. You might also be interested in the Hospital Support Pack and other information on dental anaesthetics.

Blood & Organ Donation in ME/CFS

We explain why people with ME/CFS cannot donate blood but how they can still donate organs after death. We also consider the importance of blood and organ donation in general.

Cancer, Chemotherapy, Radiotherapy and ME/CFS

When diagnosed with cancer it can help to know how the various treatments are going to affect you and your ME/CFS.

Care and Support Plans

Dental Care – Your Questions Answered

We help address common questions about maintaining dental hygiene while ill with ME/CFS. We also consider how to best manage mouth ulcers, anaesthetic sensitivity, and the role of antibiotics in dental practice.

Diet and Nutrition

Disability Rating Scale

Hospital Support Pack

Cover of Ten Key Aspects of ME/CFS Management booklet

Management – Ten Key Aspects

This booklet brings together the 10 most important aspects to managing your ME/CFS and is consistent with the NICE Guideline on ME/CFS.

Management – What gets in the way of good management?

Good management can be the key that helps people with ME/CFS improve their quality of life. We provide an in-depth review of the 3 most common barriers and how they can be overcome.

ME Association Book List

We’ve selected some self-help books, clinical guides, official reports, novels, and video documentaries that may interest people with ME/CFS and those who care for them.

Medication – Amitriptyline: Depression, Pain & Sleep Relief

We explain how Amitriptyline was developed as an antidepressant, but is now used more commonly to help with pain and sleep problems that occur in ME/CFS.

Medication – Duloxetine (Cymbalta): Depression & Pain Relief

We discuss anxiety, depression and pain in ME/CFS, and how they can be managed. We feature the drug duloxetine and review the evidence for its use as a symptom-relieving medication.

Medication – Gabapentin (Neurontin): Moderate to Severe Pain Relief

We talk about pain in ME/CFS and how it can be managed. We feature Gabapentin, review the evidence for its use as a pain relief medication, and its legal status as a Class C controlled Drug.

Medication – Lyrica (Pregabalin): Moderate to Severe Pain Relief

We talk about pain in ME/CFS and how it can be managed. We feature Lyrica, review the evidence for its use as a pain relief medication, and its legal status as a Class C controlled Drug.

Membership – Excellent Reasons to Join!

A leaflet that provides some excellent reasons to become a member of the ME Association. Please also refer to the Membership page of the website. We look forward to welcoming you to the community!

Menopause – Overview, Hormone replacement therapy/HRT and female hormone research in ME/CFS

We consider all aspects of menopause including diagnosis, symptoms, and treatments, and discuss the effect it can have on women with ME/CFS.

Pacing: Activity and Energy Management.

We explain how you can safely manage functional incapacity by using a management approach known as Pacing. It will help you learn how to live with ME/CFS and Long Covid without triggering an exacerbation of symptoms. It is consistent with the NICE Guideline on ME/CFS.

Pregnancy & Childbirth

Deciding whether to have a child is something that requires a great deal of careful planning if you have ME/CFS and we hope this leaflet will help you reach an informed decision.

Primary care infographic for healthcare professionals

A comprehensive infographic with expert information from Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) to help primary healthcare professionals with diagnosing ME/CFS.

It contains vital information regarding suspecting ME/CFS, diagnosis, differential diagnoses, key symptoms, investigations, and information relating to NHS specialist referrals.

N.B. The ME Association always has medical education under consideration and we are continually looking into finding the best ways to reach healthcare professionals.

Relapses, Exacerbations & Flare-ups

We explain what you can expect from a relapse and how you can best manage any setback in your health, and review the recommendations from the NICE Guideline on ME/CFS.

Severe ME/CFS: Helping You Cope

Sleep Management

Failing to have a good night’s sleep on a regular basis is likely to have an adverse effect on all aspects of your health. Various types of sleep disturbance occur in ME/CFS and Long Covid, especially waking up feeling unrefreshed. There are a number of simple self-help strategies that can be of help. In some cases drug treatments have a role to play as well.

Travel

Helpful tips for people with ME/CFS and Long Covid, including; planning your trip, choosing the right destination and accommodation, surviving the journey, travel insurance and pre-travel vaccinations, and travel checklists.

Treating ME/CFS: Including research into new and experimental approaches

When it comes to using drugs to treat ME/CFS, there is no curative treatment at present and none on the immediate horizon, but you can learn how to effectively manage the condition, and some drugs are available to help relieve certain symptoms. In this booklet we review what is available and how the different treatment approaches can help, while also considering potential new treatments that are being researched, and the overlap of treatments with Long Covid.

Medication (6)