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.
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.
THE PROGNOSIS OF CFS/ME – Dr Alastair Miller
Despite a huge investment in biomedical research in the field of CFS/ME, there is still no unifying mechanism that explains the development and persistence of the syndrome. Neither is there a simple laboratory test that can confirm nor exclude the diagnosis. The diagnosis remains a clinical one made by an experienced clinician and based on a very characteristic pattern of symptoms. Although every patient’s experience may differ, the overall constellation of features makes the diagnosis clear so it is a positive diagnosis rather than a “diagnosis of exclusion” (although it is usual to perform a number of simple laboratory investigations to ensure that no alternative or additional diagnosis exists).
Once the diagnosis has been established there are two questions on everyone’s mind. What is the treatment and what is the prognosis (outlook)? I have not been asked to review the treatment here and it remains controversial but suffice it to say that in line with the lack of a disease mechanism there is similarly, a total absence of pharmacological approaches to treatment. So although some drugs may be helpful in relieving specific symptoms, there is no drug that will affect the overall natural history of the condition and effect a “cure”. Although NICE guidelines and the PACE trial remain contentious amongst some patient groups there is absolutely no doubt in my mind that the current approaches of cognitive behavior therapy (CBT) and Graded Exercise Therapy have helped and continue to help a large number of people to recover from the condition. This is based on my own personal experience, trial evidence (PACE and others), anecdotal experience from colleagues and patients and data from the National Outcomes Database (NOD).
Many of the websites give (in my view) an unrealistically gloomy picture of the outcome for CFS/ME. It is likely that those who still suffer from the condition may contribute more vociferously to the websites whereas those who have recovered may prefer to move on. Apart from the NOD there is little scientific data on which to prognosticate so my views are based largely on anecdotal experience gathered over a 30 year career of involvement with this condition. However, they are largely in accord with the NOD data.
In my view the simplest way to think about prognosis is in “thirds”. Using best available therapy (CBT/GET delivered by trained and experienced therapists), approximately a third of patients will make a full recovery and return to their pre morbid activity, about a third will improve but not recover fully and about a third will stay the same (and a small number may deteriorate).
There are various markers of a good prognosis:
- Having a relatively acute onset with a a specific pre-disposing illness
- Not having any ongoing specific aggravating factors such as disputes at work, relationship issues, litigation, etc.
- Having an open mind about the causes and disease mechanisms
- Early engagement with a good therapist
Conversely, the markers of a poor prognosis are:
- Having a slow onset over a number of months with no obvious precipitating illness
- Having ongoing perpetuating factors (as above)
- Constantly looking for an alternative biomedical explanation for symptoms
- Using alternative, unproved and often expensive approaches to therapy
In summary although the prognosis overall is variable and for those with severe longstanding symptoms and quality of life is severely impaired, overall the majority of sufferers will improve with time. Hopefully in future we shall have therapies that can improve this prognosis further.
Conflicts of Interest. Alastair Miller is now retired from CFS/ME practice but spent 10 years as Clinical Lead for CFS/ME at the Liverpool Infectious Disease Unit. He reviewed adverse events for the PACE trial and was on the Trial Steering Committee for the GETSET trial. He was Chair of the British Association for Chronic Fatigue and ME (BACME) for 3 years and Principal Medical Adviser to Action for ME (AfME)