Health visitor Cecilia Hunt offers an invaluable personal perspective on myalgic encephalitis (ME), revealing how you can champion those who remain invisible.
Imagine waking up every morning feeling as if you haven’t slept a wink and your body aches as if you’ve caught the flu. Although it’s months since you even went outside, you have the groggy head that follows a late night out. The daylight hurts your eyes and your ears ring with the slightest noise. Inside your chest, your heart hammers uncontrollably, because your body’s lost the ability you once took for granted to regulate multiple systems. You wonder if the tiny envelope of energy granted to you today is enough to have a shower, or whether the effort will leave you bedbound.
These symptoms are among those experienced by an estimated 1.3 million people in the UK living with myalgic encephalitis/chronic fatigue syndrome (Action for ME, 2025a), referred to here as ME. It is the new normal for my 21-year-old son, whose previous life as an athlete at university has been derailed. Now housebound and dependent on his family for day-to-day care, he faces an uncertain future in which relationships, employment and simple pleasures – like a walk in the park or an evening out with friends – are unattainable.
LEARNING THE FACTS
As a nurse, I admit I knew very little about ME before watching a loved one’s life plans unravel. There is no diagnostic test for the condition, and historically people with ME were dismissed as ‘malingering’ or told their illness was psychological in nature. Looking back across my career in mental health, I wonder if there was a handful of patients treated with antidepressants and activity-focused care plans, who were, in fact, unwell with ME. It’s now accepted that ME is a severe, multisystemic and disabling condition (Baranuik et al, 2024), and that on a cellular level, mitochondrial functioning may be impaired (Roberts, 2021). Yet, for most people with ME, timely and responsive care remains elusive.
According to the National Institute for Health and Care Excellence (NICE, 2021), ME should be suspected in the presence of debilitating fatigue, post-exertional malaise (PEM – a worsening of symptoms after even minor activity), unrefreshing sleep and cognitive difficulties. Symptoms must have been present for at least six weeks in adults, or four weeks in children, and differential diagnoses must have been excluded.
A formal diagnosis can be made after three months of symptoms persisting, however in reality, this can take many more months, if not years to confirm. After my son’s health plummeted, it took 10 months of persistent presentation at primary care and a lengthy waiting list for an overwhelmed ME clinic before a formal diagnosis was made.
THE CURRENT GAP BETWEEN SPECIALIST ME SERVICE PROVISION AND DEMAND LEAVES PEOPLE FLOUNDERING AS THEY LOSE THE LIVES THEY KNEW. THIS IS NOT GOOD ENOUGH
We were lucky: we’d thoroughly researched my son’s symptoms and had prepared for this diagnosis. We’d disregarded initial medical advice for him to exercise through his exhaustion – a dangerous contraindication for ME (NICE, 2021). While waiting for ME to be confirmed, support was limited as we navigated a steep learning curve in understanding his new limitations.
A WAY FORWARD?
There is no known cure for ME. Prognosis is variable (Shepherd, 2020), with data suggesting only 5% will ever return to their previous level of functioning. Those with mild symptoms who manage employment typically work fewer hours and have lower incomes than most. Those with moderate to severe symptoms remain severely restricted, often housebound and sometimes bedbound. Rarely, very severe cases can be fatal, as we learned from the remarkable Maeve Boothby- O’Neill, whose bright and resilient nature shone through her illness until her death in 2021 (Smith, 2024).
The best chance of stabilising symptoms is through aggressive rest and pacing. Think of a faulty mobile phone battery that can’t hold power despite charging for hours overnight. The trick is to try and get through the day without it going flat – something that might just not be possible. This means severely curtailing any demands and may require a person to spend much of the day in silence in a dark room. ME isolates, robbing a person of multiple sources of pleasure. Those without the social and economic resources to rest risk their condition worsening: a heartbreaking health inequality.
AWARENESS MATTERS
This ME Awareness Week and beyond, I’m asking my healthcare colleagues to make a difference for people affected by ME:
- Be curious about individuals who experience chronic fatigue without a clear medical cause, particularly following a viral infection. Enquire about the presence of unrefreshing sleep and brain fog. Believe what they are saying and signpost them to their GP to initiate a diagnostic work up. It’s possible that about half of those diagnosed with persistent long Covid meet the criteria for ME (Ankush and Guthridge, 2024), so it’s likely rates have risen in both child and adult populations. Early diagnosis with education about rest and pacing is essential, and community practitioners are key in facilitating timely access to primary care.
- Accept that for someone with ME, face-to-face or morning appointments may be unrealistic, or could cost them significant PEM. Consider how your service can accommodate the needs of people with ME, enabling them to preserve their individual energy baselines.
- Recognise that living with a chronic illness is a grieving process, for both the person diagnosed and their family. You can facilitate adjustment simply by listening and offering empathy. I’ll never forget the young locum GP who showed us she understood through her simple reflective statements.
- Advocate for those affected by ME. The government recently proposed there will be no increase in funding for research into ME (ME Research UK, 2025), despite it long being associated with poorer quality of life than a range of conditions including cancer, chronic mental illness, arthritis, and diabetes (Falk Hvidberg et al, 2015).
WHAT ELSE CAN YOU DO?
The current gap between specialist ME service provision and demand leaves people floundering as they lose the lives they knew. This is not good enough. Follow and support organisations such as Action for ME and the ME Association. The #ThereForME campaign undertakes brilliant work campaigning for a more responsive NHS.
It’s no coincidence that Florence Nightingale’s birthday on 12 May falls within ME Awareness Week (12-18 May 2025). In her later years, Florence became chronically ill following an infection and today she would have met the diagnostic criteria for ME. Florence Nightingale achieved so much before she became unwell, yet too many others living with ME remain invisible. Let’s champion the lives they deserve.
Cecilia Hunt is a health visitor working in a London NHS Trust.
YOUR VOICE
If you would like to share your personal or professional experience of ME or of any other health issue, get in touch with editor Aviva Attias aviva@communitypractitioner.co.uk
REFERENCES
Action for ME. (2025a) What is ME? See: actionforme.org.uk/supporting-you/what-is-me/ (accessed 7 April 2025).
Ankush D, Guthridge M. (2024) The persistence of myalgic encephalomyelitis/chronic fatigue syndrom (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis. See: journalofinfection.com/article/S0163-4453(24)00231-7/fulltext (accessed 28 April 2025)
Baranuik JN, Marshall-Gradisnik SM, Eaton-Fitch N. (2024) Myalgic encephalomyelitis (Chronic fatigue syndrome). See: bestpractice.bmj.com/topics/en-gb/277 (accessed 7 April 2025).
Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD et al. (2015) The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). PLoS ONE 10(7): e0132421.
ME Research UK. (2025) There are currently no plans to allocate additional funding towards the ME/CFS final delivery plan. DHSC. See: meresearch.org.uk/there-are-currently-no-plans-to-allocate-additional-funding-towards-the-me-cfs-final-delivery-plan-dhsc/ (accessed 7 April 2025).
National Institute for Health and Care Excellence. (2021) Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. See: nice.org.uk/guidance/ng206 (accessed 7 April 2025).
Roberts E. (2021) Mitochondria and CFS. See: meresearch.org.uk/mitochondria-and-cfs/ (accessed 7 April 2025).
Shepherd C. (2020) Prognosis, Permanency and Quality of Life in ME/CFS. See: meassociation.org.uk/wp-content/uploads/2025/02/Prognosis-Permanency-and-Quality-of-Life-in-MECFS-November-2020.pdf (accessed 7 April 2025).
Smith J. (2024) Treatment changes urged after ME patient’s death. BBC News See: bbc.co.uk/news/articles/czrgmdv4z0go (accessed 7 April 2025).
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