M.E. Awareness Week 2015: AYME’s Press Release:

The Association of Young People with M.E. (AYME) has revealed that 94% of children and young people with M.E. (also known as Chronic Fatigue Syndrome, CFS) have experienced their condition being disbelieved.

Nearly 800 young people (aged up to 25) took part in the research, organised by national children’s charity, AYME, in aid of M.E. Awareness Week. The survey also revealed that 96% of those asked felt their condition is not understood by the general public and professionals alike, as well as other illnesses.

“These findings reflect what we see time and again with the young people we support,” says MaryJane Willows, Chief Executive of AYME. “Despite being the greatest cause of long-term school absence, M.E/CFS remains relatively unheard of by many people, even amongst those with a duty of care for children, such as schools and GPs.

“As well as being somewhat difficult to diagnose, it is also highly likely that M.E./CFS could be so widely misunderstood due to its lack of visible symptoms – with all too many of its sufferers enduring this debilitating illness without any outward physical signs.”

M.E. is a chronic, fluctuating illness thought to affect around 25,000 young people in the UK. Often causing crippling pain and severe exhaustion, the condition can in some cases leave sufferers houseand even bed-bound. The resulting effect is a feeling of intense isolation, which the survey revealed to be staggeringly prevalent amongst those questioned – with more than half of respondents stating they feel isolated most or all of the time.

“Many of the young people we support highlight feelings of isolation as something they face on a daily basis,” continues Willows.

“What’s perhaps the most upsetting is that where it can be difficult to eradicate feelings of isolation in the most severe of cases, it is almost always possible to lessen them. This requires the right support, however, and far more specialist services, and in-depth training are needed to stop isolation in its tracks and get these vulnerable young people, and their families, the support that they need.”

The leading national charity working solely with children and young people with M.E./CFS, AYME’s research is supporting the organisation’s efforts this national M.E. Awareness Week (11th -17th May) to highlight the specific effects of living with a ‘hidden’ illness. The charity’s campaign, “Now you see ME”, will run throughout the week on its website and social media channels, working to raise awareness of this debilitating condition at a time when it gains the most attention.

The survey also revealed:

93% felt their condition would be better understood if it were more visible.
Nearly three quarters of respondents find isolation affects them to the same degree, or worse, than their physical symptoms.