In his second consecutive ‘Medicine Balls' column in Private Eye, Dr Phil Hammond returns to a subject in which he has a close professional interest – the medical care of people and in particular young people with ME/CFS. Click HERE to see what he wrote in the Eye last week.
The Eye received many supportive letters for stating in the last issue that CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) has biological causes, but also some criticisms.
As one doctor put it: “Every illness has a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone's illness is likely to lead to a much poorer outcome. This ‘triple diagnosis' applies to any disorder you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME where any suggestion that there might be a psychological or social component leads to criticism. That cognitive behavioural therapy (CBT) is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.”
ME campaigners don't ignore the fact that CBT and graded exercise therapy (GET) have been shown to work in randomised controlled trials and are endorsed by lofty scientific institutions such as the Cochrane Collaboration and NICE, but they do challenge the science.
The PACE trial, set up to compare the effectiveness of the four treatments for CFS/ME, has caused particular controversy and activists have had to fight to gain access to sue of the data which they are re-analysing to determine if claims about the efficacy of GET and CBT have been over-sdtated. For the PACE researchers to accept any such re-analysis would require it to be published as a credible peer-reviewed journal with independent analysis that is free from bias. It is a long and complex process.
M.D. agrees that the split between mind and body is unhelpful, and there are indeed physical, psychological and octal elements in all illnesses, either as causes or consequences. But it was doctors who initially dismissed a physical basis for CFS/ME, and as a consequence insufficient attention and resources have been given to doing large scale biological nutritional and genetic studies that might provide alternative treatments to the non-drug options currently on offer.
In M.D.'s experience, CBT can help treat distressing anxiety and depression, and it can help people live with any chronic disease whatever the causes. But we should investigate pharmacological and nutritional treatments too. There are a significant number of CFS/ME patients who aren't helped by current treatments.
Genetic studies may reveal that CFS/ME is in fact multiple different disorders requiring different approaches. And given the large number of people affected (250,000 in the UK), we need to do this research.
M.D. has now listened to around 600 NHS patients up to the age of 19 who have been referred because profound fatigue has led to a drastic reduction in their previous levels of activity, usually with significant school absence. Families are desperate for help. The consultations are up to 90 minutes long, with breaks, and can be very complex. Some patients have CFS/ME, some have chronic fatigue likely to be due to other causes, and many have a mixture of both. It is not usual to see young people who not only have very disabling fatigue, but also anxiety, depression, a history of self-harm or an eating disorder. They have have diabetes, autistic spectrum disorder or ADHD. They may be bullied, live in poverty, have chaotic lives or exam overload. Often they are socially isolated and not believed. Sometimes it isn't easy to figure out precise causes for the fatigue, even in 90 minutes.
There isn't yet a specific diagnostic test for CFS/ME so diagnosis is made on criteria which inevitably have an element of subjectivity. We try to take into account other potential causes of fatigue. All patients diagnosed with CFS/ME have profound post-exertional malaise that can completely wipe them for hours, days and even weeks. All have unrefreshing sleep. Most recall a time when they were very active and full of energy and a clear trigger to the symptoms, usually an infection. Most young patients who are able to engage in treatment recover in time.
Current NHS provision for help with CFS/ME is very patchy and many children and adults have no access to any treatment locally. Those most severely affected are often housebound, with cuts in funding for home visits delaying or preventing assessment. Carers often have to give up work. Complex physical, psychology and social issues abound in all chronic disease, but prejudice mustn't blind us from looking for genetic causes and drug and nutritional treatments, or trying and trialling the non-drug treatments we already have. Research data must be shared for others to fairly analyse and use. But ultimately individual patients decide what works for them, and what doesn't.