Guidance
Diagnosis
There is no test or cure for Myalgic Encephalomyelitis (M.E.) but there are guidelines to help doctors diagnose and treat it. It can take a long time for the condition to be diagnosed, as other conditions that cause similar symptoms need to be ruled out first. Therefore, you may be given some advice about managing your symptoms before a diagnosis is confirmed. Patients looking for medical services outside the UK should contact their national health organisations for details.
Within the National Health Service (NHS) it is commonly called Chronic Fatigue Syndrome (CFS or CFS/M.E.). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS) is officially recognised as a neurological disorder by the World Health Organisation, the Department for Work and Pensions and the Department of Health and Social Care. It has been called “The Disease of a Thousand Names”, with many controversies surrounding them, as I described in A Short History of Myalgic Encephalomyelitis. I recommend the Dialogues for a neglected illness project, produced with a Wellcome Public Engagement Fund Award, which is a collection of videos that aims to explain Myalgic Encephalomyelitis.
If you see your General Practitioner about persistent and excessive fatigue, they will ask you about your medical history and may carry out a physical examination. You might like to make a note of your symptoms, or simply use my article about The Symptoms of Myalgic Encephalomyelitis as a checklist. You may have blood tests, urine tests and scans to rule out other conditions.
You might be diagnosed with Post-Viral Fatigue (PVF) or Post-Viral Fatigue Syndrome (PVFS) following a viral infection, including the Coronavirus disease (COVID-19). Long Covid is the patient-preferred term used to describe this experience of post-infection illness. The precise explanation for what causes post-infection/viral fatigue remains uncertain, and although it is usually temporary, further symptoms can develop over several months. This might lead to the diagnosis of a longer-term or chronic illness, such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Information on this subject can be misleading but the ME Association (PDF file) has produced an excellent publication.
If your GP is not well educated about PVF/PVFS or M.E./CFS, see if he or she is either willing to learn or knows of someone who is more knowledgeable. There is a very useful booklet called ME/CFS/PVFS – An Exploration of the Key Clinical Issues, which is prepared for health professionals by Dr Charles Shepherd, MB, BS and Dr Abhit Chaudhuri, DM, MD, MRCP. Doctors with ME is a global professional association for medical practitioners, scientists and researchers in the field of Myalgic Encephalomyelitis. You are, of course, within your rights to consult another GP at the surgery, or register elsewhere. People involved in regional support groups will be able to recommend ‘M.E. friendly’ GPs; the ME Association has an up-to-date list of Local Support Groups.
Guidelines released in 2021 from the National Institute for Health and Care Excellence (NICE) state that doctors should suspect M.E./CFS if the following apply:
- the person has had all of the persistent symptoms (see below) for a minimum of 6 weeks in adults and 4 weeks in children and young people and
- the person’s ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels and
- symptoms are not explained by another condition.
All of these symptoms should be present:
- Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
- Post-exertional malaise after activity in which the worsening of symptoms:
- is often delayed in onset by hours or days
- is disproportionate to the activity
- has a prolonged recovery time that may last hours, days, weeks or longer.
- Unrefreshing sleep or sleep disturbance (or both), which may include:
- feeling exhausted, feeling flu-like and stiff on waking
- broken or shallow sleep, altered sleep pattern or hypersomnia.
- Cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
If M.E./CFS is suspected, your doctor should carry out a medical assessment, physical examination and investigations to rule out other possible causes. The NICE guidelines state that diagnosis is recommended if symptoms have persisted for 3 months and are not explained by any other condition. You should be referred to an M.E./CFS Specialist Service* to confirm the diagnosis and develop a care and support plan. The earlier that your illness is recognised, the sooner you can begin to manage and treat your symptoms. I recommend keeping a daily record diary of your health (summarising your symptoms, diet, activity and sleep patterns) to assist your healthcare providers.
Management
Your GP may refer you to a specialist for help in addressing aspects of your illness, its complexity or severity, or to exclude other diagnoses. The speciality of the consultant is less important than their knowledge, experience and understanding of M.E./CFS. You can now book, change or cancel your appointments online via the NHS e-Referral Service. If you are not happy with the care provided, do not be afraid to raise your concerns with the specialist and/or your GP. If you are unable to resolve the issue informally then you should make a formal complaint; NHS Choices has a step-by-step guide to the complaints procedure. The Data Protection Act gives you the right to see your health records by making a Subject Access Request; the Information Commissioner’s Office explains the application process. Doctors commonly use abbreviations and acronyms in medical records; you will find a comprehensive list on Wikipedia to assist you.
Most NHS treatment is free, although there can be charges for some things, such as prescriptions and travel costs. You might be entitled to help with these costs; please visit GOV.UK for further details. If you decide to use private healthcare, please ensure that you discuss it with your GP; most private specialists will not agree to see a patient without a recommendation letter from their GP. Private Healthcare UK provides a wide range of information about private health care services, including private hospitals and NHS private patient units, along with private doctors and specialists.
Treatments can help relieve some symptoms but this is a matter of trial and error; the illness has an individual element – what helps one person might not work for the next. Your GP and/or specialist can help with a range of issues, including sleep disturbance, coping with pain and energy management. NICE previously recommended Cognitive Behavioural Therapy, Graded Exercise Therapy and activity management programmes, although these treatments have been criticised by patients and charities due to insufficient evidence. Complementary and alternative medicines are commonly used in Myalgic Encephalomyelitis; you will find a wide range of information and personal experiences in my Blog.
* NHS multi-disciplinary services were set up in a number of regions after the government announced ring-fenced funding of £8.5 million in 2003. Clinical Network Coordinating Centres (CNCCs) advocate the development of services and improved clinical care in their area. This led to the development of a network of healthcare professionals, now known as the British Association of Clinicians in ME/CFS (BACME), to promote and support the delivery of evidenced-based treatment throughout the UK. The BACME provides an up-to-date list of services; patients can contact any of the CNCCs for information but referrals must be made by a healthcare professional. These services report positive outcomes in terms of helping patients to self-manage the illness but patient opinion is mixed. The period of ring-fenced funding ended in 2006, and in many places it is still not possible to see a local specialist with experience of M.E./CFS. BACME has developed a practical checklist/toolkit and guide for the treatment of M.E./CFS. that can be used by a range of health professionals. BACME Guide: ME/CFS Guide to Symptom Management (PDF file) includes existing documents, e.g. CBT competencies, NICE guidance, and PACE trial findings, together with new content, e.g. medications for symptom management. The approach has been based on clinician expertise, patient experience and the best available evidence. An All Party Parliamentary Group for M.E. meets in Westminster to raise awareness and support the improvement of health, social care, education and employment opportunities.
Prognosis
Relapses are a common part of M.E./CFS and can be caused by a number of factors, such as an infection or an unplanned activity, although sometimes there is no clear cause. Most studies, and several doctors, report that many people with M.E. feel better over time, although full recovery is rare, and that a subset of patients regress or remain severely ill. Regardless of which group you can identify with, it is important to try and remain positive; any progress is good progress, and it is important to take heart from that. Action for M.E. has produced a useful Functional ability scale (PDF file) to help you follow your progress.
In 2006 a study by Dr Leonard Jason et al. looked into the Causes of death among patients with chronic fatigue syndrome. They found that CFS patients who died of cancer, suicide and heart failure were significantly younger than people in the general population dying of the same causes. The first official UK death from ‘Chronic Fatigue Syndrome’ was recorded in 2006: 32-year-old Sophia Mirza had suffered from the condition for several years. The coroner recorded the cause of death as Acute Anuric Renal Failure (failure to produce urine) due to dehydration as a result of Chronic Fatigue Syndrome. In 2012 Emily Collingridge passed away at the age of 30 after a long battle with M.E./CFS. An inquest ruled the cause of death as “respiratory arrest in an individual with clinically diagnosed Myalgic Encephalomyelitis due to the side-effects of prescription drugs and aspiration of gastric contents”.
Research into M.E./CFS causes, treatment methods and cures continues. Many organisations publish global research digests, such as the free monthly publication by Emerge Australia, and there are also some excellent mailing lists, although CureME is suitable for both patients and professionals. You will find a number of websites and blogs about M.E./CFS related research, which can help to explain the studies in plain language, including Health Rising.
In October 2010, the NHS Blood and Transplant introduced a permanent deferral of donation from M.E./CFS patients. In a news release they stated, “donor selection guidelines were changed as a precaution to protect the donor’s safety by ensuring the condition is not made worse by donating blood.” A Change Notification was issued in September 2015 to include the names Post-Viral Fatigue Syndrome (PVFS) and Systemic Exertion Intolerance Disease (SEID).
Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), is classed as a disability under the Equality Act 2010, as it can have a “substantial and long-term adverse effect on the ability of an employee to carry out normal day-to-day activities”. Your employer is therefore obliged to make reasonable adjustments to ensure that you are not at a disadvantage at work. Once they know that you have the condition and understand what that entails, you are able to ask your employer to make a range of adjustments which may include changes to your working environment, workload and work pattern.
In August 2023, the UK government announced a new plan to help those impacted by M.E./CFS. The Interim Delivery Plan identifies how care and support for those who experience M.E./CFS can be practically improved, and sets out the next steps necessary to improve understanding of M.E./CFS and support for those affected. Developed around three key themes - research, attitudes and education, and living with M.E./CFS – the government also launched a consultation on the proposals, inviting views on how well the proposed actions address issues important to the M.E./CFS community, and to help identify where it needs to go further. The consultation outcome, Improving the experiences of people with M.E./CFS, was published in December 2024.
Listening to your body is imperative, and you should act in response to the symptoms. The unpredictable nature of M.E./CFS is frustrating but it should be taken as a warning signal. We all overdo things sometimes but you will slowly learn your triggers and limitations. You will find that the slightest measures can be an enormous help in managing your condition. Your daily record diary will also prove useful for highlighting patterns with certain symptoms. I have written A Self-Help Guide to Managing Myalgic Encephalomyelitis to provide additional information and advice.