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 (11)
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.
Factsheet: Research Summary – The Pathology of ME/CFS
A factsheet that explains what the research is telling us about ME/CFS. It considers triggers, symptoms, and the pathology that might cause and perpetuate this neurological condition.
Factsheet: What you need to know about ME/CFS
ME/CFS is a complex multisystem disease with a wide range of disabling symptoms. This factsheet provides information to help understand its symptoms and impact.
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.
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.
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
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.
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.
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.
Caring for a Person with ME/CFS
An extensive booklet that considers the wellbeing of carers as well as the people they care for, what caring might actually involve, the kind of help that might be necessary, and 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
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.
ME and My Carer
We help you explain to others the complexities of ME/CFS and how it affects your daily life. This leaflet is useful when communicating your needs to those who care for you.
Severe ME/CFS: Helping You Cope
In this booklet 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.
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.
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.
Covid-19, Long Covid and ME/CFS (5)
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 (2023)
This template letter can help you obtain a Free NHS Autumn Covid Booster vaccination if you have ME/CFS and decide to have one. Please refer to the website blog for more information.
Diagnosis (16)
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
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.
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.
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 – Female Hormones & HRT
We consider all aspects of the 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.
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.
Diet and Nutrition (4)
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
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 ME/CFS.
Education and Employment (6)
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, pensions, early retirement, 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.
Permanent Health Insurance (PHI)
We explain what PHI is all about and how it should help to replace lost income if you become unable to work.
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.
Cognitive Behavioural Therapy (CBT)
We examine CBT, consider the research evidence to support its use in ME/CFS, and the potential benefits (and controversies) of this talking therapy. You might also like to review the NICE Guideline on ME/CFS.
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.
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.
Management (17)
Alternative and Complementary Approaches
We review the evidence for the more common types of CAM treatments. It is not surprising that many turn to this sector, but it can be worth taking a cautious approach especially when claims appear too good to be true.
Anaesthesia and ME/CFS
Jointly produced by the RCoA, MEA and PwME, this leaflet aims to provide people who need to have an anaesthetic or sedation with information about what they might expect at the different stages of the surgical journey, and what they can do to prepare, with their healthcare teams. These issues were also covered in a recent Podcast from the College, with Dr Krige, Dr Shepherd, and Helen Baxter. You might also be interested in the Going into Hospital booklet and 'Medical Matters' for information on dental anaesthetics.
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
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.
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
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.
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.
Hospital – Going into Hospital
We review the things that you should consider before being admitted to hospital, the NICE Guideline recommendations, and suggest questions that you might like to ask your GP or consultant during your stay. Please also refer to the Anaesthesia and ME/CFS leaflet.
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.
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.
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
In this booklet 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.
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.
NICE Guideline (2)
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.
Symptoms (16)
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.
Autonomic Dysfunction
Profs. Sivan and Newton, and Dr McKeever, explain how to recognise and manage autonomic dysfunction (OI and PoTS etc.) in ME/CFS and Long Covid (Nov. 2023).
Cognitive Dysfunction – Brain Fog
A key symptom of ME/CFS and Long Covid, it can be very frustrating, affecting memory and recall, word-finding, comprehension, reading, writing, concentration and other mental activities. You might also like to review the NICE Guideline on ME/CFS.
Cold Hands & Feet (Incl. Raynaud's Phenomenon)
In this booklet, we explore problems with temperature control (also called disturbed thermoregulation) which are very common in ME/CFS and include sensitivity to both heat and cold.
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.
Drugs – 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.
Drugs – 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.
Drugs – 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.
Fatigue – The Nature of Fatigue
A key symptom of ME/CFS and Long Covid, we explain what is meant by debilitating fatigue and how it differs from the ‘chronic fatigue' that occurs in a wide range of other medical and psychiatric illnesses. You might also like to review the NICE Guideline on ME/CFS.
Headaches & Migraines
We discuss what we know about headaches and migraines and the way they affect some people with ME/CFS. We also consider when to see your doctor and pharmacist to discuss treatment options. You might also like to review the NICE Guideline on ME/CFS.
Orthostatic Intolerance
A key symptom in ME/CFS and Long Covid, we explain what might be causing loss of balance and dizziness when moving about and how this can best be managed. You might also like to review the NICE Guideline on ME/CFS.
Pain Management
Most people with ME/CFS will experience pain that will likely impact their functional ability and quality of life. We discuss the various types of pain and how each can best be managed. You might also like to review the NICE Guideline on ME/CFS.
Postural Orthostatic Tachycardia Syndrome (PoTS)
We explain PoTS, why it affects some people with ME/CFS (and Long Covid) and how it can be diagnosed and treated. You might also like to review the NICE Guideline on ME/CFS.
Sensitivities, Intolerances, and Hypersensitivities
We review common sensitivities, intolerances, and hypersensitivities that can occur in ME/CFS and offer management options and tips. You might also like to review the NICE Guideline on ME/CFS.
Stomach & Irritable Bowel Symptoms
Most people with ME/CFS report that they have stomach and bowel symptoms like those found in IBS. We examine the symptoms, explain how they should to be investigated, and discuss available treatments. You might also like to review the NICE Guideline on ME/CFS.
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.
Travel (1)
Vaccinations (3)
Flu Vaccinations and ME/CFS (2023-2024)
This leaflet is to supply you with everything you need to know about flu vaccines and ME/CFS. You and your doctor can then decide whether you ought to have this protection.
Template: Flu Vaccine (2023-24)
This template letter can help you obtain a Free NHS Flu vaccination if you have ME/CFS and decide to have one. Please refer to the website blog for more information.
Vitamins and Supplements (8)
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.
Essential Fatty Acids
Including EPA, Fish Oil, and Evening Primrose Oil supplements. We consider what they do, how helpful they might be, and if they are safe for people with ME/CFS. You might also like to review the NICE Guideline on ME/CFS.
Muscle Energy Supplements
We consider exertion-induced muscle fatigue and examine the effectiveness of the supplements that are sold as being able to increase muscle energy. You might also like to review the NICE Guideline on ME/CFS.
Supplements – Myth or Miracle Cure?
We examine the scientific evidence supporting some of the claims made about the curative properties of supplements. You might also like to review the NICE Guideline on ME/CFS.
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.
Vitamin B12 & Deficiency
We examine vitamin B12, consider if it could be an effective treatment, if deficiency is likely in ME/CFS, and pernicious anaemia. You might also like to review the NICE Guideline on ME/CFS.
Vitamin D & Deficiency
We examine vitamin D, consider if deficiency is likely in ME/CFS and how it can be treated. You might also like to review the NICE Guideline on ME/CFS.
