Campaigning
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.
A day to honor
A day to honor 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
living with severe ME
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
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.
