Diagnosis, Treatment & Prognosis
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 national M.E. Organisations for details.
Within the National Health Service (NHS) it is commonly called Chronic Fatigue Syndrome (CFS or CFS/M.E.). Sometimes it is known as Myalgic Encephalopathy, or diagnosed as Post-viral Fatigue Syndrome (PVFS). 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. It has been called "The Disease of a Thousand Names", with many controversies surrounding them, as described in A Short History of 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 download a copy of The Symptoms of Myalgic Encephalomyelitis to use as a checklist. You may have blood tests, urine tests and scans to rule out other conditions.
If your GP is not well educated about M.E., 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. You are, of course, within your rights to consult another GP at the surgery, or register elsewhere. People involved in local support groups will be able to recommend M.E. friendly GPs; you will find your nearest group on the M.E. Organisations page.
Guidelines released in 2007 from the National Institute for Health and Care Excellence (NICE) state that doctors should consider diagnosing CFS/M.E. if a person has fatigue and all the following apply:
- it is new or had a clear starting point (it has not been a lifelong problem)
- it is persistent and/or recurrent
- it is unexplained by other conditions
- it substantially reduces the amount of activity someone can do
- it feels worse after physical activity
The person should also have one or more of these symptoms:
- difficulty sleeping, or insomnia
- muscle or joint pain without inflammation
- painful lymph nodes that are not enlarged
- sore throat
- poor mental function, such as difficulty thinking
- symptoms getting worse after physical or mental exertion
- feeling unwell or having flu-like symptoms
- dizziness or nausea
- heart palpitations, without heart disease
This diagnosis should be confirmed by a clinician after other conditions have been ruled out, and the above symptoms have persisted for at least four months in an adult and three months in a child or young person. 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.
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. 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 NHS Choices 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 recommends 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 M.E.; you will find a wide range of information and personal experiences in the Articles Index.
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 CFS/M.E. (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. BACME has developed a practical checklist/toolkit and guide for the treatment of CFS/M.E. that can be used by a range of health professionals. BACME Guide: Therapy and Symptom Management in CFS/ME (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.
Relapses are a common part of M.E. 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. The M.E. Disability Scale is a simple yet effective resource 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. An inquest ruled the cause of death as “respiratory arrest in an individual with clinically diagnosed M.E. due to the side-effects of prescription drugs and aspiration of gastric contents”.
M.E. Research into causes, treatment methods and cures continues.
In October 2010, the NHS Blood and Transplant (NHSBT) introduced a permanent deferral of donation from M.E./CFS patients. In a News Release (Microsoft Word document) 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 Encephalitis (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.
Listening to your body is imperative, and you should act in response to the symptoms. The unpredictable nature of M.E. 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. Please take a moment to read A Self-Help Guide to Managing Myalgic Encephalomyelitis, and do not hesitate to Contact Me anytime.