Chronic Fatigue Syndrome 2

The Eye received many supportive letters for stating Chronic Fatigue Syndrome/ME has biological causes but also some criticisms. As one doctor put it: ‘Every illness had 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, which compared four non-drug treatments for CFS/ME, has caused particular controversy and activists have had to fight to gain access to some of the data which they are reanalysing to determine if claims about the efficacy of GET and CBT have been overstated. The PACE researchers have done their own reanalysis of their data and believe their original results to be valid. MD has a long list of credible scientists who believe the PACE trial findings, and an equally long list of those who don’t. Who do you believe?

Because there is no biological test for CFS/ME, it may be that we are dealing with different illnesses. Those with mild to moderate CFS may get better with CBT and GET – and some may even get better on their own. Many activists believe these patients have chronic fatigue but not ME. Those with severe CFS (which many activists recognise as ME) are often housebound or wheelchair bound and some may be made worse by the demands of CBT and GET. Other activists are adamant that CFS and ME are completely different. The debate is unlikely to be resolved until there are definitive diagnostic tests, which is one reason why more research is needed.

MD agrees that the split between mind and body is unhelpful, and there are indeed physical, psychological and social 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 MD’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.

MD has now listened to around six hundred 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 unusual to see young people who not only have very disabling fatigue, but also anxiety, depression, a history of a self-harm or an eating disorder. They may 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.

Because there isn’t yet a specific diagnostic test for CFS/ME, the 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 out for hours, days and even weeks (see Eye last). All have unrefreshing sleep. Most recall a time when they were very active and full of energy and a clear trigger to the symptoms starting, 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 domiciliary visit funding delaying or preventing assessment. Carers often have to give up work. Complex physical, psychological 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.

Note: The ME/CFS Epidemiology and Genomics Alliance (MEGA) has recently been set up to try to improve the scientific understanding of ME/CFS, and investigate the biology of the illness. It comprises a group of 15 UK scientists and four patient charities (Action for M.E., the Association of Young People with ME, the ME Association and ME Research UK, with Action for M.E. taking a representative role) who have come together to establish a big data research study of over 10,000 adults and 2,000 children and young people. More details here

Chronic Fatigue Syndrome 1

MD’s greatest regret as a junior doctor was not to take the time to understand ME (Myalgic Encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME isn’t a biological illness and that it predominantly affects middle class patients (‘Yuppie flu’). Both beliefs are entirely wrong, and I apologise unreservedly for them. They have caused huge distress and damage to those with ME. Medicine has particularly failed those with severe ME, many of whom have lived for decades with a very disabling disease and the enduring falsehood that it’s ‘all in the mind’ or due to ‘faulty beliefs’. Psychological illness can be as distressing and real as any physical illness, and often the two occur together. But ample evidence exits of biological abnormalities in patients with ME, though we are some way off having a definitive pathological test and effective drug treatments.

ME is often used synonymously with Chronic Fatigue Syndrome (CFS), but the illness is far more than fatigue. MD’s view – working in an NHS clinic for young people with chronic fatigue – is that ‘CFS/ME’ is a cluster of disorders which centre not just on severe, disabling fatigue but on post exertional malaise (PEM). This means that previously very active patients can suddenly crash after physical or cognitive activity, which completely wipes them out for at least 24 hours and often much longer, with multiple unpleasant symptoms. Anyone who has lived through or observed such crashes is left in no doubt that the disease isn’t psychological.

CFS/ME is often – but not always – triggered by a viral infection. Nausea, severe pain, headaches, sensitivity to light, sound and touch, cognitive dysfunction and dizziness caused by faulty blood pressure control (orthostatic intolerance) are common. Patients also suffer poor and unrefreshing sleep, waking up feeling utterly exhausted. A huge reduction in energy is accompanied by an inevitable reduction in previous levels of activity. In young people, CFS/ME is the commonest cause of long term school absence, and the threat of legal action for poor attendance is all too common.

In 2015, the US Institute of Medicine reviewed over 9000 research articles and concluded ME has a biological basis and is a ‘serious, chronic, complex systemic disease’ characterised by neuro-immune abnormalities causing patients to be severely intolerant to exertion. Other studies have shown abnormalities in cellular metabolism, gut bacteria and gene expression in some patients. The ME Association’s Christmas Appeal is raising funds to analyse 300 blood samples from a CFS/ME biobank, looking at metabolomics – chemical clues that are left behind after changes in cells – picking up on research from the University of California which suggested that CFS/ME could be the body going into a state of semi-hibernation. Many other examples of innovative research were presented at the recent International Association for CFS/ME conference in Fort Lauderdale, with chronic inflammation a recurring theme. But even the hard core researchers admit it could be years before we have definitive tests and effective drug treatments. Funding for further trials is needed.

The challenge in the meantime is how to help the 250,000 CFS/ME patients in the UK who need it now. Non pharmacological approaches to CFS/ME include trying to establish a regular sleep pattern and to manage activity levels to avoid booming and busting, and the horrible payback of post exertional malaise. This can be hard to do, but in MD’s experience many young people who have recovered enough to engage in a managed activity programme do very well, probably because stabilising sleep and managing activity levels effect metabolism and hormone levels, such as cortisol. CBT can help establish these recovery routines and manage anxiety but isn’t itself a cure. Many recover in time, by gradually increasing activities when they feel able. Some get recurrences.

Other patients are simply unable to increase activity and exercise levels, and some are made worse by trying. All interventions – drug or non-drug – can cause harm as well as benefit, and there are a significant number of patients with severe CFS/ME who are not helped by any current interventions. Research needs to focus on those most severely affected, and we all need to focus on believing in ME. It is a proven and classified neuro-immune disorder, from which some people recover and some don’t. Yet. You can donate to the ME Association Christmas Appeal at www.meassociation.org.uk