What is ME & CFS?

 WHAT IS ME or CFS? – Professor Anthony J Pinching

ME/CFS is a common organic illness that can cause widespread symptoms and a major change in a person’s life and functioning. It has been called the ‘disease of a thousand names’ – none of them is very satisfactory!

Whatever it is called, it can be a difficult, unpleasant and confusing illness that has a big impact. Many of the symptoms seem to reflect a change in the “tuning” of the nervous system, and the immune system, with a knock-on effect on many body functions. It is classified by the World Health Organisation as a neurological disease.

SYMPTOMS AND DIAGNOSIS

Patients experience disabling and profound physical and mental exhaustion (quite unlike normal tiredness), accompanied by some of a wide range of other symptoms.

These symptoms include malaise (feeling ill, often flu-like and made worse after activity), muscle, joint and/or nerve pain, headache, recurrent sore throat, tender lymph nodes, irritable bowel syndrome, disturbed balance, poor concentration and short-term memory, word-finding problems, sensitivity to light and/or noise, alcohol intolerance, and sleep disturbance and/or unrefreshing sleep.

Mood changes are also common, whether as a consequence of the illness and its impact, as a recurrence of a prior vulnerability, or as part of the illness.

The symptoms vary and fluctuate, often after increased physical, cognitive or emotional activity, typically delayed to the next day or days.

These symptoms can also be seen in a range of other conditions, and it is important that they are assessed by a doctor, who can recognise the different patterns as well as excluding other conditions. Whilst there isn’t a specific test for ME/CFS, the pattern of symptoms is often sufficiently characteristic for a doctor to make a diagnosis, having also ruled out other similar-sounding illnesses.

CAUSE

The cause of ME/CFS is still unclear, but there is much more research now going on that will help to identify that. A number of factors have been shown to predispose to, precipitate or perpetuate it.

In many cases, the onset follows an acute infection (often but not always viral) or sometimes another physical trauma, from which they don’t seem to recover properly. Glandular fever, viral hepatitis, viral meningitis or labyrinthitis are amongst the infections that can commonly set off ME/CFS. Other people experience a more slow, insidious onset, without an obvious trigger.

Some people seem more vulnerable to this failure to recover. There seems to be some genetic susceptibility, seen in some families. Other predisposing factors can be getting an infection when not yet recovered from another infection, or substantial physical or emotional stressors. Going back to work too soon, or attempting high levels of physical activity, when not fully recovered from acute infection, may also play a part.

Once it has started, physical, mental and emotional stressors, or over-activity, infections and trauma, can exacerbate the condition or slow its recovery, as can the presence of other illness alongside it. Most commonly, people try to push themselves to recover too quickly, triggering setbacks, and taking longer to recover as a result. Some people, who have had unpleasant symptoms early on when they have tried to do more, may understandably become overcautious and may function at a lower level than they need.

PREVALENCE, TREATMENT AND PROGNOSIS

Several large studies suggest that this affects about 1 in 250 people, about half of whom will be needing to seek help for it. ME/CFS can affect people of all ages and socio-economic groups, but it is most common in the middle decades, and in women more than men.

The approach to treatment must start with early and clear diagnosis. Knowing what is, and is not, happening can help a lot! Having some explanation of how the illness affects body functioning and causes symptoms can also make a difference. The next step is acceptance; this can be hard, but it is essential if a person is to take the necessary approaches to enable recovery.

Based on a person’s own experience and the evidence from other patients and research studies, health professionals can then help one to identify a sustainable level of functioning that maximises what one can do, but without interfering with the body’s healing processes. This can involve big (downward) adjustments to one’s expectations, especially to start with.

It can be very hard to cope with the symptoms and the reduced function, especially while one is feeling ill, as well as dealing with altered expectations and role, including in the family and regarding work/education. Professionals and others can help guide and support patients through this in various ways.

Some of the symptoms are very unpleasant (eg pain), some will interfere with recovery (eg sleep problems), some will affect coping and quality of life (eg changes in mood). Clinicians can offer treatments that can reduce the impact of the symptoms, and help the journey of recovery.

Whilst we are well short of a “cure”, and we lack specific treatments for this illness, there is increasing experience and evidence about what can be done to assist the process of recovery, and to make the journey a bit less hard.

Prognosis is variable and unpredictable. Quite a lot of people who become ill after infections can recover relatively soon (in a year or so), especially if diagnosed and managed early. But others may take longer to recover, either because their illness is more severe/prolonged, or because other factors interfere with the process of recovery and healing. Although most people do gradually improve and adjust to the remaining restrictions, a significant minority remain severely affected for long periods.