The 8th of August marks Severe ME Awareness Day – a day dedicated to raising awareness for those suffering from severe myalgic encephalomyelitis (ME). This day also serves as a remembrance for those who have lost their lives to this debilitating condition.
One such individual is Sophia Mirza, a British artist who passed away aged 32 from ME. She is one of the first individuals in the UK to have ME formally acknowledged as a contributory factor to death. Her birthday of 8th August serves as a poignant reminder of the harsh realities faced by individuals living with severe ME.
Estimates suggest that between 10% and 25% of individuals with ME suffer from the severe form of the illness. The impact of severe ME on an individual’s life is profound, leaving many confined to their homes, bedbound, or even immobile. The severity of the illness, coupled with the lack of understanding, can lead to sufferers being excluded from healthcare systems, and relying heavily on the support of a dedicated caregiver.
Symptoms and challenges
The challenges faced by those with severe ME go far beyond the debilitating fatigue that makes many activities impossible. The NICE 2021 guidelines describe the severe forms of the illness as follows:
People with severe ME/CFS are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
Very severe ME/CFS
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
As with ME in general, individuals with severe ME experience post-exertional malaise (PEM), which means that even minor physical or mental activities can cause a severe worsening of symptoms. Generally, the greater the severity of the illness, the lower the threshold for triggering PEM and the greater the consequences.
This devastating illness presents differently in each person, with countless other symptoms that could be listed. The unique challenges of living with the severe forms of the illness are highlighted as part of ‘Dialogues for a Neglected Illness’ – a moving and meticulously researched project supported by the Wellcome Public Engagement Fund (2018–21) and produced by Natalie Boulton with cameraman and editor Josh Biggs.
The prospects of recovery are worse for the severely affected than for other mobile, functioning patients, whether adults or children. Moreover, our knowledge is limited about the biomedical basis of severe illness or its long-term consequences as biomedical research into severe ME is extremely rare.
Whilst no specific treatments are available, tailored supportive care can be provided to suit the unique needs of each individual. According to NICE, examples include adaptations and aids to assist mobility for daily activities and low-stimulus environments.
The gravity of severe ME cannot be underestimated, as it has claimed the lives of many individuals. Distressingly, there have also been instances of suicides among those battling this relentless illness, highlighting the desperate need for better understanding, compassion and support. There is also a desperate need for research into severe ME.
Severe ME Awareness Day is a vital occasion to shine a spotlight on this often-ignored condition. By spreading awareness and educating the public about severe ME, we can hope for greater understanding, empathy and support for those who are silently suffering.