**Trigger Warning: Upsetting content**
As a coroner calls for better treatments and training in chronic fatigue syndrome, a mother tells of her battle for her child's symptoms to be taken seriously.
inews.co.uk
The ME Association provided much of the background information to this excellent article, and you can read the full article on the button below.
Extracts
Angus Rodwell was eight when he started to suffer repeated viral infections. His mother Tina wasn’t worried at first – assuming her son was just being hit by childhood bugs and it would pass; their GP agreed. But in the months that followed, he continued to suffer with a series of seemingly unrelated symptoms: headaches, abdominal pains, nausea, itchy skin, cold sweats, poor sleep and difficulty focusing.
His symptoms would wax and wane, and the family continued to struggle to get answers.
Paperwork shows the consultant wrote in his referral letter that “Angus’ perception of severity of his symptoms is more than they actually are” and that treatment should be from a “psychosocial point of view”. At this point he was missing days in school, spending very little time out of the house, and struggling with even basic tasks.
It wasn’t until 2018, when Angus was 13, that he was diagnosed with chronic fatigue syndrome – then confirmed as severe myalgic encephalomyelitis (ME) in 2021. The condition continues to dictate their lives, but Tina says in all that time they have received little NHS support.
Current estimates put the number of patients at around 700,000 in the UK, and it’s thought at least half of those with long Covid may meet the criteria for ME.
While ME is thought to be more common in adults than in children, paediatric rates are hard to pin down. Average age of onset is about 13 to 15 among children, but the ME Association notes cases can occur as young as five years old.
Coroner Deborah Archer said there was no current available funding for research into and treatment for the chronic fatigue syndrome and “extremely limited” training for doctors treating patients, warning that others could die if things did not change. It is now hoped that the harrowing inquest (of Maeve Boothby-O’Neill) could mark a turning point for people with ME.
Now 19, Angus Rodwell is no longer bedbound. With his mother’s diligent care and keeping his exertion within his limited “energy envelope”, his condition has gradually improved. In 2023 he gained his English and maths GCSEs (…a 15-minute lesson would require a week of recovery).