How can community pharmacies support people with Myalgic Encephalomyelitis? Pharmacist and Action for M.E. volunteer, Emily Beardall, who lives with the condition, explains
A lack of understanding and awareness about Myalgic Encephalomyelitis (M.E.) as a debilitating, physical, hidden illness means that children and adults with the condition often experience disbelief from those around them – including professionals.
M.E., often diagnosed within the NHS as Chronic Fatigue Syndrome, or M.E./CFS, is a multi-system, fluctuating, long-term condition affecting 250,000 men, women and children in the UK. A GP surgery with 10,000 patients will have around 40 patients with M.E., so it’s possible that you might have M.E. patients that you are unaware of, as currently there is no specific treatment.
To coincide with M.E. awareness month in May, UK charity Action for M.E. and I have produced ‘M.E./CFS: a guide for pharmacy teams‘, a resource bringing together relevant information from research and health guidelines, including quick reference tables on pathophysiology, symptoms and management, and common medication issues.
You can download ‘M.E./CFS: a guide for pharmacy teams’ at www.actionforme.org.uk/pharmacy-and-me
The key symptom of M.E. is post-exertional malaise, triggered by physical/mental activity, so patients must carefully manage energy and rest. Function levels can range from being in work (this requires careful energy management) to not being able to wash or feed themselves. M.E. fluctuates in symptoms and severity, so people who seem well one day can be very unwell the next – support with ordering repeat prescriptions, remembering medication, deliveries and other pharmacy services can be invaluable.
For me it feels like I now have the energy levels of a 80 year old
— marina durrant (@durrant_marina) May 25, 2017
M.E. often begins with an infection, such as an upper respiratory tract infection, gastroenteritis or glandular fever. Early diagnosis is important to provide the correct advice and prevent worsening of the condition to severe M.E., so if you suspect a patient might have M.E., perhaps during an over-the-counter consultation, please refer them to their GP.
— Louise Bostock (@LouflipflopB) April 13, 2017
Cognitive difficulties in M.E. can affect concentration and the ability to retain information, so offering a written summary, as per the Accessible Information Standard, is recommended, particularly for patients with severe M.E. – around a quarter of patients are so severely affected that they are often house – or even bed-bound.
Mine started after Pneumonia in 1994 in France, managed to work on n off until July 2011, now housebound 99% of the time, no life at 48
— Mark Herridge (@markaherridge) May 26, 2017
Recently, biomedical research and clinical trials of drugs for the illness have made their way into mainstream media so there is starting to be a greater understanding of M.E. Studies suggest that energy metabolism, muscle, autoimmunity, the gut microbiome and the autonomic nervous system are affected, and there are a number of drugs in clinical trials for M.E. The disease-modifying antirheumatic drugs (DMARDs) cyclophosphamide and rituximab, currently in phase III, add strength to the theory that M.E. is an autoimmune condition.
Other trials include CNS stimulants, low-dose naltrexone, antibacterials, antivirals, and antihypertensives. A systematic review of the drugs that have been trialled for M.E. has been published in Clinical Therapeutics.
Currently, low-dose Tricyclic anti-depressants (TCAs) and anti-epileptics are prescribed unlicensed in preference to long term use of opioids, due to limited efficacy, increasing tolerance and side effects. Commonly amitriptyline (unlicensed use), initially 10mg or less if not tolerated due to daytime drowsiness or antimuscarinic effects, up to 75mg. Imipramine and nortriptyline are less sedating if daytime drowsiness affects function.
Patients may feel that they have been disbelieved if they are prescribed an antidepressant, even though they are ineffective for depression at these low doses. Reinforcing this would help to reassure them.
The anti-epileptics gabapentin or pregabalin may be prescribed for moderate or severe pain not responding to low-dose TCAs, again as an unlicensed use. Duloxetine or mirtazapine may be helpful in neuropathic pain with comorbid depression. Non-steroidal anti-inflammatory drugs may be helpful for musculo-skeletal pain.
People with M.E. often have increased susceptibility to side effects, and the similarity of M.E. symptoms with the common side effects of medication can result in prescribing cascades. Issues with polypharmacy are also common in people with M.E. who take medication for M.E. or comorbid conditions.
Being vigilant of polypharmacy and suggesting solutions, such as medication that will help more than one symptom, can help to reduce the burden of polypharmacy. One patient interviewed for our pharmacy resource – and included in it as a case study – was taking 20 different regular prescription items to manage severe M.E. and co-morbid conditions.
Yes yes yes!!!
— Anne Corris (@corrisanne) May 25, 2017
If you are supporting a patient with M.E., or their carer, you can refer them to Action for M.E. for information and support on all aspects of living with the condition, including applying for welfare benefits and accessing peer-support. Call 0117 927 9551 or visit www.actionforme.org.uk.