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Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) NICE Guidance
We are exploring change to the Myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) pathway for adults, and children and young people, in line with the new NICE Guidance published in 2021.
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome:
Are complex, long term, disabling diseases which can have a devastating impact on function and quality of life
Affects many systems in the body including the brain, muscles, digestive, immune and cardiac systems
Affects children, young people and adults, whatever their background
80% of those affected are women and it is believed that prevalence may be higher in ethnic minority groups
Is the greatest cause of long-term sickness absence from school
Affects everyone differently
for some people symptoms still allow them to carry out some activities
for others (about 25%) symptoms mean that they are unable to leave their home or their bed
Diagnosis can be made after symptoms have been present for three months
Full recovery is rare (less than 10%), but many improve, especially with early diagnosis and careful management and support
Classified by the World Health Organisation (WHO) as a neurological condition and placed by WHO under disorders of the nervous system
Symptoms include:
Chronic, profound & disabling fatigue which does not improve with rest or sleep
Post exertional malaise (PEM) after activity in which the worsening of symptoms:
is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer
can be triggered by physical, cognitive, emotional and social activities, and sensory overload
Unrefreshing sleep/sleep disturbance
Cognitive difficulties “brain fog”
Pain (muscle, joint, nerve, headaches)
Orthostatic intolerance, – difficulty in maintaining an upright position, especially when sitting and standing, affecting heart rate and blood pressure (for example POTS)
Gastrointestinal problems
Sensitivities to light, noise, touch, medicines & chemicals
Allergies and intolerances
Care, Support and Management
The Guidelines for the care of people with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) were rewritten by NICE and published in October 2021.
NICE recommends that assessment and care and support planning should be carried out by a team which is trained and specialises in the care of people with ME and CFS.
There is no cure for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome but symptoms can usually be managed. The Myalgic Encephalomyelitis and Chronic Fatigue Syndrome specialist team will advise on management. This includes:
Self management strategies such as pacing and energy management
Medication for symptom control, (for example pain, sleep disturbance, orthostatic intolerance)
Wellbeing support
NICE also recommends that ongoing reviews by your GP of your care and support needs should be carried out at least annually for adults and every six months for children. This may need to be more often depending on severity and complexity.
We are exploring change to the Myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) pathway for adults, and children and young people, in line with the new NICE Guidance published in 2021.
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome:
Are complex, long term, disabling diseases which can have a devastating impact on function and quality of life
Affects many systems in the body including the brain, muscles, digestive, immune and cardiac systems
Affects children, young people and adults, whatever their background
80% of those affected are women and it is believed that prevalence may be higher in ethnic minority groups
Is the greatest cause of long-term sickness absence from school
Affects everyone differently
for some people symptoms still allow them to carry out some activities
for others (about 25%) symptoms mean that they are unable to leave their home or their bed
Diagnosis can be made after symptoms have been present for three months
Full recovery is rare (less than 10%), but many improve, especially with early diagnosis and careful management and support
Classified by the World Health Organisation (WHO) as a neurological condition and placed by WHO under disorders of the nervous system
Symptoms include:
Chronic, profound & disabling fatigue which does not improve with rest or sleep
Post exertional malaise (PEM) after activity in which the worsening of symptoms:
is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer
can be triggered by physical, cognitive, emotional and social activities, and sensory overload
Unrefreshing sleep/sleep disturbance
Cognitive difficulties “brain fog”
Pain (muscle, joint, nerve, headaches)
Orthostatic intolerance, – difficulty in maintaining an upright position, especially when sitting and standing, affecting heart rate and blood pressure (for example POTS)
Gastrointestinal problems
Sensitivities to light, noise, touch, medicines & chemicals
Allergies and intolerances
Care, Support and Management
The Guidelines for the care of people with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) were rewritten by NICE and published in October 2021.
NICE recommends that assessment and care and support planning should be carried out by a team which is trained and specialises in the care of people with ME and CFS.
There is no cure for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome but symptoms can usually be managed. The Myalgic Encephalomyelitis and Chronic Fatigue Syndrome specialist team will advise on management. This includes:
Self management strategies such as pacing and energy management
Medication for symptom control, (for example pain, sleep disturbance, orthostatic intolerance)
Wellbeing support
NICE also recommends that ongoing reviews by your GP of your care and support needs should be carried out at least annually for adults and every six months for children. This may need to be more often depending on severity and complexity.
We are currently reviewing Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) pathways for adults and children across Suffolk and North East Essex that is in line with NICE guidelines. We would value your time in completing this survey to help us understand your experiences of the service.
