Severe M.E Day - 8th of August 2021

A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.

Severe ME Understanding & Remembrance Day : This day aims to bring public attention to the illness for the sake of all those presently suffering from Severe Myalgic Encephalomyelitis and to remember all those who have died from ME.

A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.

This Years Focus

This year to mark Severe ME Day (8th August) we decided to feature two articles by daughters about their mothers  living with severe ME and the impact on their lives. Two very different stories, one by a journalist and the other by a 9 year old who wished to share her story in the hope of helping others.


Living with ME/CFS: The debilitating, invisible illness stealing women’s energy – ‘I was tired of lying in bed dreaming of all I wanted to do.’

By Lauren Clark, 12 May 2021

See following link for full stories

Severe ME Day 2021

New video about Severe and Very Severe ME/CFS and Long covid

Life threatening malnutrition in very severe ME/CFS


Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME will require tube feeding, either enterally or parenterally. There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need. We present five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities.

Life-Threatening Malnutrition in Very Severe ME/CFS