We spoke to Dr Charles Shepherd, Hon Medical Adviser at ME Association, member of the NICE guideline committee on ME/CFS and DHSC Delivery Plan on ME/CFS Working Group, about the impact of myalgic encephalomyelitis/chronic fatigue syndrome and why more needs to be done to address gaps in care and research
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a disabling, multisystem, and often long-term illness that involves the brain, muscle, and immune system. The composite term ME/CFS is often used. However, the patient community and many doctors regard the way in which ME was renamed and redefined as CFS in the 1980s as being inappropriate and harmful because CFS can easily lead to people with unexplained chronic fatigue being given this diagnosis.
People with ME/CFS often describe how their health failed to recover following an acute viral infection – the key diagnostic symptoms being activity-induced fatigue, cognitive dysfunction/brain fog affecting short-term memory, concentration and word-finding abilities, unrefreshing sleep, pain in the muscles, nerves or joints and post-exertional malaise – where exceeding physical or mental limitations leads to a delayed exacerbation of symptoms.
Other common symptoms include problems with balance and remaining upright (orthostatic intolerance), abnormal control of pulse and blood pressure (postural orthostatic tachycardia syndrome) and poor temperature control.
These core symptoms are also often found in long COVID, with research now indicating that around 50% of people with long COVID also meet the diagnostic criteria for ME/CFS. Epidemiological research suggests that at least 250,000 people have ME/CFS, with many starting their illness in early adulthood. Children and young people are also affected, and ME/CFS is one of the common causes of long-term sickness absence from secondary school.
Symptoms often fluctuate on a daily, weekly and monthly basis, and there is a wide range of severity. Most people with ME/CFS are unable to continue in full-time employment or education. Around 25% have severe or very severe ME/CFS – where they are housebound or bedbound and may even require tube feeding.
Overall, there is a significant reduction in quality of life, and prognosis is poor, with only around 5-10% making a full and sustained recovery.
Diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome
In 2021, NICE produced a new guideline with recommendations on how health professionals should suspect, diagnose and manage people with ME/CFS.
Key points are:
- General practitioners should normally be able to confirm the diagnosis when key diagnostic symptoms have persisted for three months. As there is no diagnostic blood test for ME/CFS, the diagnostic process should also involve a careful clinical assessment and blood tests to exclude other conditions that can cause ME/CFS-like symptoms.
- People should then be referred to a multidisciplinary specialist ME/CFS service where a care and management plan can be prepared. Unfortunately, there are still many parts of the UK where these referral services are unavailable, and people cannot access the medical input they require.
- In the absence of any safe and effective drug treatment aimed at the underlying disease process, management should concentrate on activity and energy management (pacing) along with symptomatic relief for key symptoms such as pain, sleep disturbance, abnormal pulse and blood pressure control. It should also include providing help with obtaining sickness benefits, social care, employment and education.
Myalgic encephalomyelitis/chronic fatigue syndrome research
The UBER report on ME/CFS research highlighted a major disparity in government research funding for ME/CFS when compared to other long-term disabling conditions. The ME/CFS charity sector has funded most biomedical research over the past 30 years. This includes the ME Biobank, funded by the MEA Ramsay Research Fund, where blood samples and clinical data are collected and stored for release to researchers doing laboratory-based research.
There are signs of change taking place, including Medical Research Council (MRC) funding for the Decode ME genetic study. The clinical and pathological overlaps with long COVID also bring new funding and research interest into all aspects of post-viral disease. A James Lind Alliance Priority Setting Partnership involving patients, clinicians and researchers has identified a list of high-priority research questions and priorities relating to both the cause and treatment of ME/CFS.
Existing research into causation can be split into predisposing/genetic, precipitating, and perpetuating factors:
- ME/CFS is sometimes reported in more than one family member, and the University of Edinburgh DecodeME study is carrying out DNA analysis on saliva samples from over 20,000 people;
- Although viral infections and other immune system stressors often precipitate ME/CFS, there is no robust evidence of persisting viral infection, as may be true in long-term COVID. However, as with long COVID, there is evidence of reactivated viral infection.
- A number of important abnormalities involving brain, muscle, hormones and immune system function have been identified – all of which appear to be involved in perpetuating ME/CFS; and
• The ME Biobank and the DecodeME study are building up a large amount of anonymised clinical data in addition to the samples they hold.
Continuing issues of concern
Given the fact that ME/CFS is a long-term condition that affects at least 250,000 people and is costing the country around £3.5bn in relation to benefit payments and health costs, there is an urgent need for:
• High-quality research into both cause and treatment;
• Education of all health professionals on how to suspect, diagnose and manage the condition; and
• A UK-wide network of hospital-based multidisciplinary referral services for those who need specialist care – as recommended in the 2021 NICE guideline.
The All Party Parliamentary Group on ME at Westminster, chaired by Carol Monaghan MP, has highlighted these and other concerns – especially the management of people with severe ME/CFS – in their 2022 report. They are also being discussed as part of the DHSC Delivery Plan for ME/CFS, which was set up by former health minister Sajid Javid in 2022.
However, there is still a long way to go in achieving parity with the way that other long-term disabling conditions are researched and managed.
The ME Association provides information and support and funds biomedical research into the cause and management of ME/CFS. The charity publishes free to download information on all aspects of diagnosis and management and a directory of all the specialist ME/CFS referral services throughout the UK.
www.meassociation.org.uk
ME Connect helpline: 0344 576 5326
Available 10am-12 noon, 2pm-4pm and 7pm-9pm
every day of the year.
