Some 20 million people worldwide are living with ME, yet it remains a little understood illness

On 27 September 2016, hundreds of people in the UK and around the world rallied to raise awareness of myalgic encephalomyelitis, a systemic neuro-immune disease characterised by post-exertional malaise or, in other words, a severe worsening of symptoms after even minimal exertion. Activists displayed rows of empty shoes representing some of the millions of people worldwide who are ‘missing’ from their careers, schools, social lives and families due to the debilitating symptoms that this illness can cause.

An estimated 250,000 people in the UK have myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS). It causes abnormalities in the regulation of both the immune system and the nervous system, and leaves patients housebound or bedbound and unable to work, with symptoms including severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, and poor memory and concentration. 

Spotting the symptoms

People of all ages can be affected, and in many cases onset of ME is linked to a viral infection. Other triggers may include problems with the immune system, an imbalance of hormones or psychiatric problems such as stress and emotional trauma.

Because the symptoms of ME are chronic, and often confused with those of other illnesses, community pharmacy staff may well interact with many people who have the condition over prolonged periods of time. This puts support staff in an ideal position to spot signs and symptoms of ME in customers and give them vital advice. But what exactly should support staff look for?

Dr Charles Shepherd, medical adviser at the ME Association (MEA), believes patients fall into two distinct groups: those who develop the condition post-virally (usually fit young adults who have symptoms that persist) and those whom he calls ‘tired all the time’, whose symptoms have lots of different causes.

He says: “The markers that would point towards a post-viral diagnosis are where a previously fit person has some sort of infection – maybe even chickenpox or a flu-like illness or viral infection – and they just don’t seem to recover from it. Presentation at pharmacy might well be their first port of call, so look out for customers who say they are normally well but had flu and don’t seem to be able to get back to normal, and perhaps ask you to recommend a tonic, iron pill or supplement. A red flag warning sign that this is post viral fatigue syndrome or something heading towards ME/CFS is that it is chronic.”

At the other end of the scale, says Dr Shepherd, are those who have had a long-standing issue with tiredness or fatigue that no one has got to the bottom of. “This may be atypical ME/CFS presentation, but it could also be anaemia, hepatitis C or other obscure illnesses, so these people need to be thoroughly assessed in terms of their clinical history and will need a GP referral to hospital.” 

Diagnosing ME

According to the MEA, many people in the UK experience a long delay in obtaining a diagnosis. A 2016 MEA website survey found that only 18 per cent of sufferers were diagnosed within six months of onset of symptoms, and 62 per cent waited a year or more.

“It can take a long time for CFS to be diagnosed, as other conditions that cause similar symptoms need to be ruled out first,” says Aisha Suleman, pharmacy manager at Everest Pharmacy in Manchester. “If you see your GP about persistent and excessive fatigue, they’ll ask you about your medical history and may carry out a physical examination,” explains Aisha. “You may have blood tests, urine tests and scans to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems.”

While there is no test for ME, there are clear guidelines issued by the National Institute for Health and Care Excellence (NICE) about diagnosis and management. NICE says a diagnosis of ME/CFS should be considered if a patient meets specific criteria regarding their fatigue – for example, if it can’t be explained by other conditions – and if they also have other symptoms, such as sleeping problems or problems thinking and concentrating. The diagnosis can be confirmed if these symptoms are experienced for several months.

Prognosis and effects

Patient network #MEAction says most people with ME/CFS fall into one of four groups:

  • Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage of people falling into this category is fairly small
  • The majority of sufferers, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events
  • A significant minority of people who remain severely affected and may require a great deal of practical and social support
  • A few people who show continued deterioration, which is unusual. When this occurs, a detailed medical assessment is advisable to rule out other possible diagnoses.

On its website the MEA explains that ME can change people’s lives drastically: “In the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained.”

Treatment and medication

There is currently no accepted cure and no universally effective treatment for ME, although early diagnosis and adequate rest during acute phases and relapses appear to bring the most significant improvements. 

Some of the main treatments include cognitive behavioural therapy (CBT) and a structured exercise programme called graded exercise therapy (GET), which aims to gradually increase how long patients can carry out a physical activity. Everyone responds to treatment differently, so treatment plans should be individually tailored.

Medication can be used to control pain, nausea and sleeping problems, as Aisha explains: “Over-the-counter painkillers can help ease muscle pain, joint pain and headaches, and stronger painkillers can be prescribed by a GP, although they should only be used on a short-term basis. Those with chronic pain may be referred to a pain management clinic – there are about 300 of these across the UK, mostly located in hospitals – and antidepressants can be useful for people with CFS who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed. It is not suitable for everyone. For example, it may not be suitable for those with a history of heart problems. It can also cause side effects such as a dry mouth, blurred vision, dizziness and drowsiness.”

Useful signposting

Aside from medicines advice, there are other things that can be done to help customerswho have been diagnosed with ME to manage the condition.

 Dr Shepherd says a key point is signposting: “A lot of GPs are not aware that there is a network of NHS hospital-based multi-disciplinary clinics and services where people can be referred by their GP if there is doubt about the diagnosis and management of the condition. There is a full contact list on our website [meassociation.org.uk/specialist-services-round-the-uk]. I think most doctors would accept that this is a genuine disabling illness, but some are still sceptical or even hostile about it.” 

Dr Shepherd advises patients who are not getting anywhere with their GP to ask to see someone else in the practice, and also ask to be referred to an expert or the hospital service.

Living with ME

Kate Wood, a teacher from East Sussex, began to develop ME/CFS symptoms in 2001 after a particularly nasty virus combined with major life events – getting married, relocating and changing career. She was diagnosed with ME/CFS 18 months later and also developed depression. 

Her flu-like symptoms lifted after a few years, but she was left with vague malaise and tiredness which would get much worse if she had been busy or stressed – what she calls a typical “ME boom and bust” cycle.

“In 2006/7, I started looking at alternative remedies. Cutting out wheat, caffeine and avoiding dairy really helped with energy. But depression continued to be a problem and the tiredness began to get worse so that from 2007 to 2011 I did very minimal hours of work and had given up on teaching.” 

Kate was referred to a therapist by her GP and she helped her to cope with anxiety and depression, as well as giving her the confidence to manage her illness. She was able to return to work. A new GP also discovered Kate had a borderline underactive thyroid and she says being treated for this made a huge difference to her energy levels, brain fog and general aches and pains.

I think most doctors would accept that this is a genuine, disabling illness, but some are still sceptical or even hostile about it

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