Research - Living with ME/CFS
 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 available online at
http://www.ayme.org.uk/article.php?sid=14&id=114
Last edited on Monday 03rd August 2009
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