AYME (pronounced ‘aim’) Registered charity number 1082059; was founded in 1995 and is now the largest national charity for children and young people with M.E. (Myalgic Encephalopathy) aged 5 to 25. It provides support, advice and information to young people with M.E. and their families and friends. It helps break the isolation that children and young people with M.E. feel, and makes sure their voices are heard at all levels. It has won awards for its services to members and its volunteering opportunities.

About AYME

AYME is the leading voice on children and young people living with ME/CFS. AYME's membership is made up entirely of children and young people with ME/CFS and it is their voices that are heard and represented. They are the largest national charity for children and young people with ME/CFS and have the busiest ME/CFS web site in the world. Around 50 new members join each month. AYME draws on the experience of the 4,000 children and young people we have supported in our ten years of existence.

AYME represents the voice of the child and young person with ME/CFS on Government and Royal College initiatives, including National Institute of Health and Clinical Excellence, and the Royal College of Paediatrics and Child Health. AYME is used as an advisor to the development of ME/CFS and delivery of local services for children and young people with ME/CFS in health, education and social services.

AYME is completely free to join.

Services

AYME publishes a bi-monthly newsletter called Cheers that includes contributions mainly from members on coping stragies, news, poetry and stories as well as offical AYME activities.

AYME also provides a number of services to their members lead by member volunteers. It is the only M.E./CFS charity to be run mainly by young volunteers, who are supported by office staff and the board of trustees. The 6 main sections, lead by a member volunteer on the YPC (Young People's Committee) are: Membership Services, Online Services, Special Services, General Services, PR and Fundraising.

ME/CFS: The Hard Facts

Myalgic Encephalopathy (or Encephalomyelitis) (‘ME’) is also known as Chronic Fatigue Syndrome (‘CFS’) and sometimes, in its early stages, Post Viral Fatigue Syndrome (‘PVFS’). There is debate about the most appropriate terminology so the composite term ME/CFS or CFS/ME is usually adopted.

ME/CFS is classified by the World Health Organisation ICD-10 as a neurological condition.

ME/CFS is a chronic disabling illness with many complex symptoms. The cause is unknown. As yet, there is no cure.

It is estimated that as many as 25,000 young people and children have ME/CFS. That’s one in every secondary school in the UK. The commonest age of onset is 13-15, but cases can occur as young as five-years-old.

ME/CFS has also been recorded as the most common cause of long term absence among school children: 51% compared to 23% cancer and leukaemia, 13% general medical or surgical conditions, 12% musculo-skeletal problems, 5% psychiatric disturbance and 5% virus infections. <ref>(Dowsett EG, Colby J. Long term Sickness Absence due to ME/CFS in UK School. An Epidemiological study with medical and Educational Implications. Journal of Chronic Fatigue Syndrome, 1997; 3 (2): 29:42)</ref>

Symptoms

The illness can last for years. Symptoms vary from person-to-person. They fluctuate, sometimes daily, and can be severely disabling. The most common are:

· Fatigue: Utter exhaustion, often to the point of collapse.

· Pain: Particularly headaches and intense muscle and joint pain, which is difficult to relieve with normal painkillers. Skin sensations such as skin crawling and pains and needles may be felt.

· Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue. Difficulty concentrating, word-finding and thinking. Collectively known as ‘brain fog’.

· Other symptoms:

o Body temperature disturbance

o Dizziness

o Vertigo

o Postural hypotension

o Sensitivity to light and noise

o Sleep disturbance

o Nausea, loss of appetite, gastrointestinal disturbance

o Mood swings, panic, anxiety

o Sensitivity to food, medication, alcohol, chemicals

· Severe symptoms: 25% of patients are severely affected and in addition to the above, may experience blackouts, temporary partial paralysis, loss of speech, loss of swallowing function.


In total, in the UK ME/CFS affects around 240,000 men, women and children of all ages and social and ethnic backgrounds. That is 1 in 250 people.

Up to 25% of people with ME/CFS are severely affected, either house or bedbound and unable to look after themselves.

Impact

The impact of ME/CFS is huge. A study by the adult ME/CFS charity Action for ME indicated that the cost to the nation is approximately £6.4 billion per year. The cost to the individual cannot be calculated.

Early diagnosis improves chances of recovery. Although there is no specific diagnostic test for ME/CFS, it can be diagnosed by taking a full clinical history of the patient, identifying the typical symptom pattern and ruling out other conditions.

In 2002 the UK Government gave formal recognition of the illness and provided:

· £8.5m to develop new NHS services in England

· A national research strategy led by the Medical Research Council giving ME/CFS priority status

· Referral to the National Institute for Health and Clinical Excellence (‘NICE’) to produce guidelines on diagnosis and management.

External Links

AYME Website

Action For M.E.