‘Imagine my surprise to discover ME/CFS is definitely not rare, but inexplicably and infuriatingly unacknowledged’. Fifth year medical student, Scotland.
Earlier this year, medical students at Scottish medical schools were invited to take part in an essay competition, 500 words on the topic of ‘What is your most important learning point about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?’ This edition proudly features the first prize winning essay of the competition which was funded by the Scottish Government’s education project; Learn About ME.
1ME/CFS affects at least 280,000 people in the UK, including approximately 23,000 in Scotland. It is a neurological disease with multisystem symptoms, often triggered by a virus. People with ME/CFS may be left bedbound or housebound with a significantly reduced quality of life.
2 Yet many healthcare professionals do not know how to diagnose or manage this devastating disease, nor do they know how, or what, to teach our next generation of doctors.
3People with ME/CFS, and a subset of those with long COVID, experience symptoms including post-exertional malaise (PEM), unrefreshing sleep, profound fatigue, brain fog and orthostatic intolerance.
4Patients can also present with sore throats, muscle aches, disrupted sleep, changes in bowel habit, joint and bone pain, problems with multitasking and short-term memory, word-finding difficulties, headaches, changes in smell and taste, tinnitus, disrupted menses, breathlessness, dizziness, skin rashes and hair loss.
4Research into underlying mechanisms has revealed key defects: an abnormal response to repeat exercise, gait and strength abnormalities, immune system dysfunction, neuroinflammation, altered blood cell morphology and clotting, problems with cellular-energy delivery, microbial gut dysbiosis and changes in metabolomics.
5The lack of medical education on this topic and resulting weak clinical knowledge of ME/CFS has resulted in delays to diagnosis, multiple clinic referrals and a huge cost to every taxpayer. ME/CFS costs the UK an estimated £3.3 billion a year
6 and long COVID clinics cost millions, with funding being extended for this chronic condition. Yet Scottish services are struggling to find healthcare practitioners to deliver this care or worse, offering potentially harmful patient support workshops that are directly in conflict with the NICE (NG206) 2021 ME/CFS guidelines such as the highly criticised ‘Lightning Process’.
7 Medical education on ME/CFS and post-acute infectious disease is urgently needed for earlier recognition and better management.
One student described the experience and delay in diagnosis for two of their family members: ‘. . .these young women were discarded as victims of teenage laziness or anxiety. They had to fight to gain support from their GP (General Practitioner) and their diagnosis took several second opinions and ultimately years’.
Outdated treatment using graded exercise, shown to harm ME/CFS patients, has been rebranded as ‘activity management’ in some services and offered to both ME/CFS and long COVID patients. Another medical student displayed incredible insight in recognising the deficiency of the current system, which relies largely on patient self-help: ‘the burden being placed on the patient to improve their condition through mental work’.
The key feature of ME/CFS is PEM. The most important thing to learn about PEM is that even trivial activity (whether physical, mental or emotional) can exacerbate symptoms, and that this exacerbation or flare can be delayed. A person with ME/CFS who can sit upright for five minutes on a given day could be too ill to sit up at all the next day due to PEM.
8A traditional rehabilitation programme led by a physiotherapist might include graded activity or exercise. For a non-ME/CFS person following a sports injury, orthopaedic surgery or intensive care, gently increasing activity for just a few minutes, or a few steps at a time is ideal. However, for ME/CFS patients, this approach could be incredibly harmful. People with ME/CFS need to conserve their energy and pace themselves to avoid a flare in symptoms.
4People who are only mildly affected still experience a major negative impact on their ability to work. They have very little energy for socialising, hobbies and housework. For those moderately affected, basic activities of normal daily living such as preparing food, washing and dressing can cause symptom exacerbation. Very severely affected individuals, who are often bedbound, can experience PEM from simply turning in bed, speaking and digesting food.
9ME/CFS also has a major impact on family members’ quality of life.
2 Nearly a third of medical students responding commented on the impact on quality of life as being one of the most important things to learn about this disease.
Several students wrote about a family member, or friend, whom they knew with ME/CFS. Sadly, it was a recurring theme that the medical students explained they had not been taught about ME/CFS at medical school. One commented: ‘Alas, the only time in the last four years I have encountered the term ME/CFS at medical school was as a differential diagnosis for fibromyalgia’.
It is vital that this topic features more prominently in the medical curriculum, and in our medical textbooks, to avoid patient harm due to delayed or mis-diagnosis and mismanagement. There is a lot we can offer ME/CFS patients: an early and accurate diagnosis, medication for symptom control, practical support with disability applications and mobility aids, but above all, these medical students have reminded us that ME/CFS patients should be treated with kindness, compassion and belief.
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