Association of Young People with ME

The AYME survey of 445 children and young people with ME/CFS asked for their opinions and experiences of living with their illness. These are the key findings.

How debilitating is ME/CFS?

78% of young people with will become Severely Affected at some stage in their illness
80% will drop out of education or fall behind because of their illness

What are the biggest Quality of Life issues?

44% say isolation is the biggest quality of life issue
31% say losing relationships
20% say losing independence

What are the biggest struggles resulting from ME/CFS?

33% say education
13% say dealing with a disbelieving doctor
12% say financial worries
12% dealing with the symptoms
10% say managing day-to-day

What about your medical care?

46% say they do not get the kind of support they feel they need from their GP
42% say their GP does not believe ME/CFS is a physical illness
20% of sufferers see their GP less than once a year
36% say they see their doctor at least once every three months
Over 50% say they have a good relationship with their GP
Only 4% have seen an ME/CFS specialist (15% saw a paediatrician, 14% a psychiatrist)
38% had to travel more than one hour to see any specialist
25% of young people with ME/CFS say the Chief Medical Officer's report (January 2002) acknowledging ME/CFS as an illness has improved awareness in the medical profession
37% say they would be helped significantly by a local ME/CFS specialist
Those who have been severely affected say a local medical outreach worker would make a difference to their lives

What do young people think about AYME?

94% say they are highly satisfied with the services, support and information provided by AYME

The survey was returned by 445 out of 1800 members of AYME.

Article last edited on Monday 03rd August 2009 Printable Version

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