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This guideline covers
diagnosing and managing myalgic encephalomyelitis (or
encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people
and adults. It aims to improve awareness and understanding about ME/CFS and
when to suspect it, so that people are diagnosed earlier. It also includes
recommendations on assessment and care planning, safeguarding, access to
care and symptom management.
This guideline will update NICE guideline CG53 (published August 2007).
Who is it for?
•
Health and social care professionals, including those working or providing input
into educational and occupational health services
•
Commissioners
•
People with suspected or diagnosed ME/CFS, their families and carers and the
public
What does it include?
•
the recommendations
•
recommendations for research
•
rationale and impact sections that explain why the committee made the
recommendations and how they might affect practice
NATIONAL INSTITUTE FOR HEALTH AND CARE
EXCELLENCE
Guideline
Myalgic encephalomyelitis (or
encephalopathy)/chronic fatigue syndrome:
diagnosis and management
Draft for consultation, November 2020
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•
the guideline context.
Information about how the guideline was developed is on the
guideline’s
webpage.
This includes the evidence reviews, the scope, details of the committee
and any declarations of interest.
The recommendations in this guideline update were developed based on
evidence reviewed before the COVID-19 pandemic. We have not reviewed
evidence on the effects of COVID-19, such as fatigue, so it should not be
assumed that these recommendations apply to people who have fatigue after
COVID-19.
NICE is working jointly with SIGN (The Scottish Intercollegiate Guidelines
Network) and the Royal College of General Practitioners to develop a guideline on
the long-term effects of COVID-19, including fatigue, which we expect to publish
by the end of the year.
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Recommendations ..................................................................................................... 4
1.1
1.2
1.3
1.4
1.5
1.6
1.7
1.8
1.9
1.10
1.11
1.12
1.13
1.14
1.15
Principles of care for people with ME/CFS .................................................... 4
Suspecting ME/CFS ...................................................................................... 8
Advice for people with suspected ME/CFS ................................................. 10
Diagnosis .................................................................................................... 11
Assessment and care planning by a specialist ME/CFS team .................... 11
Information and support .............................................................................. 13
Safeguarding ............................................................................................... 16
Access to care............................................................................................. 17
Supporting people with ME/CFS in work, education and training ................ 21
Multidisciplinary care................................................................................ 22
Managing ME/CFS................................................................................... 24
Managing coexisting conditions ............................................................... 36
Managing flares and relapse .................................................................... 37
Review .................................................................................................... 39
Training for health and social care professionals ..................................... 40
Contents
Terms used in this guideline ................................................................................. 41
Recommendations for research ............................................................................... 45
Rationale and impact................................................................................................ 47
Context ..................................................................................................................... 71
Finding more information and resources .................................................................. 72
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Recommendations
People have the right to be involved in discussions and make informed decisions
about their care, as described in
making decisions about your care.
Making decisions using NICE guidelines
explains how we use words to show the
strength (or certainty) of our recommendations, and has information about
prescribing medicines (including off-label use), professional guidelines, standards
and laws (including on consent and mental capacity), and safeguarding.
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1.1
Principles of care for people with ME/CFS
Awareness of ME/CFS and its impact
1.1.1
Be aware that ME/CFS:
•
is a complex, chronic medical condition affecting multiple body systems
and its pathophysiology is unclear
•
can have a significant impact on people’s (and their families and
carers’)
quality of life, including their activities of daily living, family life,
social life, emotional wellbeing, work and education
•
affects each person differently and varies widely in severity
–
in its most
severe form it can lead to substantial incapacity (see recommendations
1.1.8 and 1.1.9)
•
is a fluctuating condition in which symptoms can change unpredictably
in nature and severity over days, weeks or longer
–
ranging from being
able to carry out most daily activities to severe debilitation.
1.1.2
Recognise that people with ME/CFS may have experienced prejudice and
disbelief and feel stigmatised by people who do not understand their
illness. Take into account:
•
how this could affect the person with ME/CFS
•
that they may have lost trust in health and social services and be
hesitant about involving them.
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1.1.7
1.1.5
1.1.4
Approach to delivering care
1.1.3
Health and social care professionals should:
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acknowledge to the person the reality of living with ME/CFS and how
symptoms could affect them
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take time to build supportive, trusting and empathetic relationships
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use a person-centred approach to assess people's needs
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involve family members and carers (as appropriate) in discussions and
care planning if the person with ME/CFS chooses to include them.
Recognise that people with ME/CFS need:
•
early and accurate diagnosis so they get appropriate care for their
symptoms
•
regular monitoring and review, particularly when their symptoms are
worsening or changing (see the
section on managing flares and
relapse).
Explain to people with ME/CFS and their family or carers that they have
the right to decline or withdraw from any part of their
management plan
and it will not affect other aspects of their care. They can begin or return
to an intervention if they feel able to resume.
Additional principles of care for children and young people with ME/CFS
1.1.6
Be aware of the impact on
children and young people
with ME/CFS who
have experienced prejudice and disbelief by people they know and who
do not understand the illness (family, friends, health and social care
professionals and teachers). Health and social care professionals should
understand this experience may result in a breakdown of the therapeutic
relationship, lack of trust and hesitation to engage further in health and
social care services.
Ensure the voice of the child or young person is always heard by:
•
taking a child-centred approach, with the communication focusing on
them
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1.1.9
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discussing and regularly reviewing with the child or young person how
they want to be involved in decisions about their care (taking into
account that their parents or carers may act as
advocate)
•
taking into account that children and young people may find it difficult to
describe their symptoms and may need their parents or carers to help
them.
Awareness of severe or very severe ME/CFS and its impact
1.1.8
Be aware that people with
severe or very severe ME/CFS
may experience
some of the following symptoms that significantly affect their emotional
wellbeing, communication, mobility and ability to interact with others and
care for themselves:
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severe and constant pain, which can have muscular, arthralgic or
neuropathic features
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hypersensitivity to light, noise, touch, movement, temperature extremes
and smells
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extreme weakness, with severely reduced movement
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reduced ability or inability to speak or swallow
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cognitive difficulties, causing a limited ability to communicate and take
in written or verbal communication
•
sleep disturbance such as
unrefreshing sleep,
hypersomnia, altered
sleep pattern
•
gastrointestinal difficulties such as nausea, incontinence, constipation
and bloating
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neurological symptoms such as double vision and other visual
disorders, dizziness
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postural orthostatic tachycardia syndrome (POTS) and postural
hypotension.
Recognise that symptoms of severe or very severe ME/CFS may mean
that people:
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1.1.11
1.1.10
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need a low-stimulus environment, for example a dark quiet room with
interaction at a level of their choice (this may be little or no social
interaction)
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are housebound or bed-bound and may need support with all activities
of daily living
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need careful physical contact when supported with activities of daily
living, taking into account possible sensitivity to touch
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need aids such as wheelchairs
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cannot communicate without support and may need someone else they
have chosen to be their advocate and communicate for them
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are unable to eat and digest food easily and may need support with
hydration and nutrition (see the
section on dietary management and
strategies)
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have problems accessing information, for example because of difficulty
with screens, noise and light sensitivity, headaches affecting their
ability to read, or brain fog affecting their concentration.
Personal care and support for people with severe or very severe ME/CFS
should be carried out by health and social care practitioners who are:
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known to the person and their family members or carers wherever
possible
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aware of
the person’s
needs.
Risk assess each interaction with a person with severe or very severe
ME/CFS in advance to ensure its benefits will outweigh the risks to the
person (for example, worsening their symptoms). For people with very
severe ME/CFS, think about discussing this with
the person’s family or
carer on their behalf.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on principles of care for people with ME/CFS.
Full details of the evidence and the committee’s discussion are in
evidence review
A: information for people with ME/CFS and evidence review C: access to care and
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appendix 2: people with severe ME/CFS.
Other supporting evidence and
discussion can be found in
evidence review B: information for health and social
care professionals and appendix 1: children and young people.
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1.2
1.2.1
Suspecting ME/CFS
Explain to people presenting with possible symptoms of ME/CFS that
there currently is no diagnostic test for ME/CFS and it is recognised on
clinical grounds alone.
1.2.2
If ME/CFS is suspected carry out an assessment, which should include:
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a comprehensive clinical history
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a physical examination
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psychological wellbeing assessment
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baseline investigations to exclude other diagnoses.
1.2.3
Suspect ME/CFS if:
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the person has had all of the persistent symptoms (see box 1) for a
minimum of 6 weeks in adults and 4 weeks in
children and young
people
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the person’s
ability
to engage in occupational, educational, social or
personal activities is significantly reduced from pre-illness levels
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symptoms are new and had a specific onset.
Box 1 Symptoms for suspecting ME/CFS
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Debilitating
fatigability
that is not caused by excessive cognitive, physical,
emotional or social exertion and is not significantly relieved by rest
and
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Post-exertional symptom exacerbation
after
activity
that:
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is delayed in onset by hours or days
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is disproportionate to the activity
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has a prolonged recovery time lasting hours, days, weeks or longer
and
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Unrefreshing sleep,
which may include:
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feeling exhausted, flu-like and stiff on waking
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broken or shallow sleep, altered sleep pattern or hypersomnia
and
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Cognitive
difficulties (sometimes described as ‘brain fog’), including problems
finding words, temporary dyslexia or dyscalculia, slurred speech, slowed
responsiveness, short-term memory problems, confusion, disorientation and
difficulty concentrating or multitasking.
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1.2.6
1.2.5
1.2.4
Be aware that the following symptoms may also be associated with, but
are not exclusive to, ME/CFS:
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orthostatic intolerance
and autonomic dysfunction, including dizziness,
palpitations, fainting, nausea on standing or sitting upright from a
reclining position
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temperature hypersensitivity resulting in profuse sweating, chills, hot
flushes, or feeling very cold
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neuromuscular symptoms, including twitching and myoclonic jerks
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flu-like symptoms, including sore throat, tender glands, nausea, chills or
muscle aches
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intolerance to alcohol, or to certain foods, and chemicals
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heightened sensory sensitivities, including to light, noise, touch and
smell
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pain, including pain on touch, myalgia, headaches, eye pain, abdominal
pain or joint pain without acute redness, swelling or effusion.
Do not delay making a provisional diagnosis of ME/CFS. As soon as
ME/CFS is suspected, based on the criteria in recommendation 1.2.3,
give the person advice about symptom management (see the
section on
managing ME/CFS).
When ME/CFS is suspected, continue with any tests needed to exclude
other conditions and explain to people that this does not affect their
provisional diagnosis of ME/CFS.
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1.2.7
Primary healthcare professionals should consider seeking advice from an
appropriate specialist if there is uncertainty about interpreting signs and
symptoms and whether a referral is needed.
Referring children and young people with suspected ME/CFS
1.2.8
When ME/CFS is suspected in a child or young person based on the
criteria in recommendation 1.2.3:
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refer them to a paediatrician for further assessment and investigation
for ME/CFS and other conditions
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write to the child or young person’s place of education or training to
advise about flexible adjustments or adaptations.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on suspecting ME/CFS.
Full details of the evidence and the committee’s discussion are in
evidence
review D: diagnosis.
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1.3
Advice for people with suspected ME/CFS
See
section 1.11 for recommendations on managing specific symptoms.
This
guideline does not cover all the symptoms that can occur in ME/CFS and refers to
other NICE guidance in section 1.12.
1.3.1
When ME/CFS is suspected, give people personalised advice about
managing their symptoms. Also advise them:
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not to use more energy than they perceive they have
−
they should
plan their daily
activity
to stay within their
energy envelope
and not
push through activity
•
to rest as they need to
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to maintain a healthy balanced diet, with adequate fluid intake.
1.3.2
Explain to people with suspected ME/CFS that their diagnosis can only be
confirmed after 3 months of persistent symptoms. Reassure them that
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they can return for a review if they develop new or worsened symptoms,
and ensure they know who to contact for advice.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on advice for people with suspected ME/CFS.
Full details
of the evidence and the committee’s discussion are in
evidence
review E: strategies pre diagnosis.
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1.4
Diagnosis
Making a diagnosis
1.4.1
Diagnose ME/CFS in a child, young person or adult who has the
symptoms in recommendation 1.2.3 that have persisted for 3 months.
1.4.2
After a diagnosis, refer adults directly to a specialist team experienced in
managing ME/CFS to develop a
management plan.
1.4.3
If ME/CFS is diagnosed in a child or young person after assessment by a
paediatrician (based on the criteria in recommendation in 1.2.3), refer
them directly to a paediatric specialist team experienced in ME/CFS to
develop a management plan.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on diagnosis.
Full details of the evidence and the committee’s discussion are in
evidence
review D: diagnosis.
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1.5
Assessment and care planning by a specialist ME/CFS
team
1.5.1
After confirming a diagnosis of ME/CFS, carry out and record a holistic
assessment. This should include:
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a full history (including relevant symptoms and history, comorbidities,
overall physical and mental health, anything that is known to
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1.5.2
exacerbate or alleviate symptoms, sleep quality and other causes of
physical or emotional stress)
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physical functioning
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the impact of symptoms on psychosocial wellbeing
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current and past experiences of medicines (including tolerance and
sensitivities), vitamins and mineral supplements
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dietary assessment (including weight history before and after their
diagnosis of ME/CFS, use of restrictive and alternative diets,
and access to shopping and cooking).
Develop a personalised
management plan
with the person with ME/CFS
(and their family members or carers, as appropriate) informed by the
holistic assessment.
Based on the person’s needs,
include in the plan:
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information and support needs (see
section 1.6 on information and
support)
•
support for activities of daily living (see
recommendation 1.8.7 on
maintaining independence)
•
mobility aids and adaptations to increase or maintain independence
(see
recommendations 1.8.9 to 1.8.11 on aids and adaptations)
•
education, training or employment support needs (see
section 1.9 on
supporting people with ME/CFS in work, education and training)
•
self-management strategies, including
energy management
(see
recommendations 1.11.2 to 1.11.10 on energy management)
•
physical maintenance (see
recommendations 1.11.11 to 1.11.14 on
physical maintenance)
•
symptom management (see
recommendations 1.11.27 to 1.11.50 on
managing symptoms)
•
guidance on managing flares and relapse (see
section 1.13 on
managing flares and relapses)
•
details of the health and social care professionals involved in the
person’s
care, and how to contact them.
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1.5.4
1.5.3
Recognise that the person with ME/CFS is in charge of the aims of their
management plan. The plan should be mutually agreed and based on the
person’s:
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preferences and needs
•
skills and abilities in managing their condition
•
hopes, plans and priorities
•
symptom severity
•
physical and cognitive functioning.
Give the person (and their family members or carers, as appropriate) a
copy of their management plan and share a copy with their GP.
People with severe or very severe ME/CFS
1.5.5
Offer home visits to people with
severe or very severe ME/CFS
to carry
out their holistic assessment and develop their management plan.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on assessment and care planning.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management and evidence review A: information
for people with ME/CFS.
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1.6
Information and support
Communication
1.6.1
Provide information to people with ME/CFS and their families and carers
in a variety of formats (for example, written materials, electronic and
audio) that can be used both at home and in the clinical setting. Follow the
principles on communication, information giving and shared decision
making in the
NICE guidelines on patient experience in adult NHS
services
and
people's experience in adult social care services.
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1.6.4
1.6.2
When providing information for
children and young people
with ME/CFS,
take into account their age and level of understanding, any disabilities or
communication needs. Use interactive formats such as:
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one-to-one or group discussion
•
written materials and pictures
•
play, art and music activities
•
digital media, for example video or interactive apps.
Information about ME/CFS
1.6.3
Give people and their families and carers (as appropriate) up-to-date
information about ME/CFS starting from when ME/CFS is suspected.
Tailor information to
people’s
circumstances, including their symptoms,
the severity of their condition and how long they have had ME/CFS. Ask
people regularly if they would like more information or to revisit
discussions.
Explain that ME/CFS:
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is a fluctuating medical condition that affects everyone differently, in
which symptoms and their severity can change a lot over a day, week
or longer
•
often involves periods of remission and
relapse,
although it is less
common to have long periods of remission (see the
section on
managing flares and relapse)
•
varies in long-term outlook from person to person
–
although a small
proportion of people recover or have a long period of remission, many
will need to adapt to living with ME/CFS
•
can have a major impact on
people’s
lives, including their daily
activities, family and social life, and work or education, so they may
need to adjust how they live
•
can be worsened by particular triggers, for example new infections,
physical injury or stressful events, including childbirth
•
may be self-managed with support and advice (see the
section on
energy management).
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1.6.12
1.6.10
1.6.9
1.6.7
1.6.6
1.6.5
Explain to children and young people with ME/CFS and their parents and
carers that although long-term outcomes are different for everyone, the
outlook is usually better in children and young people than in adults.
Give people (and their families and carers, as appropriate) information
about:
•
self-help groups, support groups and other local and national resources
for people with ME/CFS
•
advice about financial support, including applying for benefits.
Give families and carers of people with ME/CFS information about the
condition and ways they can help the person.
Social care
1.6.8
Discuss sensitively with the person and their family members or carers
how social care may benefit them. Explain that it can help the person
living with ME/CFS as well as provide a route to support for families and
carers through a formal carer’s assessment.
Explain to people and their families and carers how to self-refer for a
social care needs assessment from their local authority. Offer to make the
referral for them if they prefer.
Advise children and young people with
moderate ME/CFS
to
severe or
very severe ME/CFS
and their parents or carers that they may be entitled
to support from children’s social care as children in need because of their
disability.
Supporting families and carers of people with ME/CFS
1.6.11
Follow recommendations in the
NICE guideline on supporting adult carers
on identifying, assessing and meeting the caring, physical and mental
health needs of families and carers.
Advise families and carers about the right to assessment and support for
their own needs, as follows:
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2
3
4
•
parents or carers of children and young people under 16 with ME/CFS,
according to the
Children and Families Act 2014
•
young carers, according to the
Young Carers (Needs Assessment)
Regulations 2015.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on information and support.
Full details of the evidence and the committee’s discussion are in
evidence
review A: information for people with ME/CFS.
Other supporting evidence and
discussion can be found in
evidence review B: information for health and social
care professionals, evidence review C: access to care and appendix 1: children
and young people.
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7
8
9
10
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21
1.7
1.7.1
Safeguarding
Safeguarding assessments in people with confirmed or suspected
ME/CFS should be carried out or overseen by health and social care
professionals who have training and experience in ME/CFS.
1.7.2
Recognise that people with ME/CFS, particularly those with
severe or very
severe ME/CFS,
are at risk of their symptoms being confused with signs
of abuse or neglect.
1.7.3
If an assessment under the
Mental Health Act 1983
or the
Mental
Capacity Act 2005
is needed, involve health and social care professionals
who have training and experience in ME/CFS. This should be done within
24 hours in an emergency.
Children and young people
1.7.4
Be aware that recognising and responding to possible child abuse and
neglect (maltreatment) is complex and should be considered in the same
way for
children and young people
with confirmed or suspected ME/CFS
as with any child with a chronic illness or disability. Follow the
NICE
guidelines on child maltreatment
and
child abuse and neglect.
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19
1.7.6
1.7.5
Using a child-centred approach, listen to the child or young person and
support them to express their wishes and feelings. Follow the principles of
the
Children Acts 1989
and
2004
that the welfare of the child is paramount
and that children are best looked after within their families, with their
parents playing a full part in their lives, unless compulsory intervention in
family life is necessary (see
the Department for Education's statutory
guidance on working together to safeguard children).
Recognise that the following are not necessarily a sign of abuse or
neglect in children and young people with confirmed or suspected
ME/CFS:
•
physical symptoms that do not fit a commonly recognised illness
pattern
•
more than 1 child or family member having ME/CFS
•
disagreeing with, declining or withdrawing from any part of their
management plan,
either by the child or young person or by their
parents or carers on their behalf
•
parents or carers acting as an
advocate
and communicating on behalf
of the child or young person
•
reduced or non-attendance at school.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on safeguarding.
Full details of the evidence and the committee’s discussion are in
evidence
review B: information for health and social care professionals.
Other supporting
evidence and discussion can be found in
evidence review A: information for people
with ME/CFS and appendix 1: children and young people.
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1.8
1.8.1
Access to care
Service providers should ensure people with ME/CFS can access health
and social care services by:
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1.8.3
1.8.2
•
adapting the timing, length and frequency of all appointments to the
person’s needs
•
taking into account physical accessibility, such as how far the person
has to travel, whether there is suitable transport and parking and where
rooms are for appointments
•
taking into account sensitivities to light, noise, touch, pain, temperature
extremes or smells
•
providing care flexibly, such as by phone or video conferencing or
making home visits.
Do not discharge someone who misses appointments because their
symptoms have worsened. Contact them to explore why they could not
attend and how to support them.
Be aware that people with ME/CFS are unlikely to be seen at their worst
because:
•
debilitating symptoms, fear of
relapse
or
post-exertional symptom
exacerbation
may often prevent people from leaving their home
•
cognitive difficulties may often mean people wait until they feel they can
speak and explain clearly before contacting services.
People with severe or very severe ME/CFS
1.8.4
Service providers should be proactive and flexible in delivering services to
people with
severe or very severe ME/CFS,
who may have particular
difficulty accessing services and articulating their needs. This could
include home visits, online consultations, written communication, and
supporting their applications for aids and appliances.
Hospital care
For improving access to hospital outpatient care for people with ME/CFS, see
recommendation 1.8.1.
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1.8.5
Discuss with people who need inpatient care whether any aspects of
where their care will be provided could cause problems for them,
including:
•
where a bed is situated on a ward (if possible, aim to provide a single
room)
•
the accessibility of toilets and washrooms
•
environmental factors such as lighting, noise, heating and smells.
People with severe or very severe ME/CFS
1.8.6
When planning hospital care for people with severe or very severe
ME/CFS:
•
discuss with the person (and their family members or carers, as
appropriate) what to expect when they come into hospital
•
aim to minimise discomfort and post-exertional symptom exacerbation
during transfer to hospital, for example by planning the route in
advance, avoiding noisy areas and admitting them straight to the ward
on arrival
•
discuss the person’s
management plan
with them, including information
on comorbidities, intolerances and sensitivities, to plan any reasonable
adjustments that are needed
•
aim to provide a single room if possible
•
keep stimuli to a minimum, for example by:
−
seeing them one-to-one
−
using calm movements and gestures
−
not duplicating assessments
−
being cautious about the pressure of touch
−
keeping lights dimmed
−
reducing noise
−
keeping a stable temperature
−
minimising strong smells.
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8
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30
1.8.11
1.8.10
1.8.8
Maintaining independence
1.8.7
If a person with ME/CFS needs support at home, conduct a social care
assessment, record and provide information and support on:
•
activities of daily living
•
mobility, including transferring from bed to chair, access to and use of
the toilet and washing facilities, use of stairs, and access to outside
space
•
dexterity and poor balance, including avoiding falls
•
their home, including environmental controls to avoid glare from lights,
loud noise, and temperature fluctuations
•
the feasibility of equipment and adaptations
•
access to technology, including online access
•
where to get financial support and advice, for example signposting to
advice on money management and making personalised arrangements
with banks or the Post Office to access personal finances, and how to
claim carers' and disability benefits and grants.
Give families and carers information on how to access training and
resources about how to care for the person with ME/CFS.
Aids and adaptations
1.8.9
Provide aids and adaptations identified in the
person’s
management plan
without delay, so that people can carry out activities of daily living and
maintain their quality of life as much as possible.
Enable prompt assessment for funding for home adaptation. If the person
is not eligible for funding, continue to offer information and support in
arranging home adaptations.
For people with
moderate ME/CFS
or severe or very severe ME/CFS,
consider providing or recommending aids and adaptations (such as a
wheelchair, blue badge or stairlift) that could help them maintain their
independence and improve their quality of life, taking into account the
risks and benefits. Include these in the person’s
management plan.
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For a short explanation of why the committee made these recommendations see
the
rationale and impact section on access to care.
Full details of the evidence and the committee’s discussion are in
evidence
review C: access to care.
Other supporting evidence and discussion can be found
in
evidence review A: information for people with ME/CFS and appendix 2: people
with severe ME/CFS.
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2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
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1.9
Supporting people with ME/CFS in work, education and
training
1.9.1
Advise people with ME/CFS that:
•
there may be times when they are unable to continue with work or
education
•
some people find that going back to work, school or college worsens
their symptoms
•
they may be able to access reasonable adjustments or adaptations (in
line with the Equality Act 2010) to help them continue or return to work
or education.
1.9.2
Offer to liaise
on the person’s behalf (with their informed consent)
with
employers, education providers and support services. Give them
information about ME/CFS and
discuss the person’s agreed
management
plan
and any adjustments needed.
1.9.3
Health and social care professionals should follow the
Department for
Education’s
guidance
on supporting pupils at school with medical
conditions
or equivalent statutory guidance.
1.9.4
Health and social care professionals should work with training and
education services to:
•
provide information about ME/CFS and the needs and impairments of
children and young people
with ME/CFS, including the need for a
balance of activities in their life
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1.9.6
1.9.5
•
discuss the child or young person’s management plan
so that everyone
has a common understanding of their priorities, hopes and plans
•
discuss a flexible approach to training and education
–
this could
include adjustments to the school day, online or home schooling and
using assistive equipment.
Give parents and carers information about education, health and care
plans and how to request one from their local authority.
Advise children and young people with ME/CFS (and their parents and
carers) that:
•
training or education should not be the only
activity
they undertake
•
they should aim to find a balance between the time they spend on
education or training, home and family life, and social activities.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on supporting people with ME/CFS in work,
education and training.
Full details of the evidence and the committee’s discussion are in
evidence
review A: information for people with ME/CFS and appendix 1: children and young
people.
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19
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22
1.10
1.10.1
Multidisciplinary care
Provide care for people with ME/CFS using a coordinated multidisciplinary
approach.
Based on the person’s needs,
include health and social care
professionals with expertise in the following:
•
self-management strategies, including
energy management
•
symptom management
•
managing flares and
relapse
•
activities of daily living
•
emotional wellbeing, including family and sexual relationships
•
diet and nutrition
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20
1.10.3
1.10.2
•
mobility, avoiding falls and problems from loss of dexterity, including
access to aids and rehabilitation services
•
social care and support
•
support to engage in work, education, social activities and hobbies.
Care for people whose ME/CFS is managed in primary care should be
supported by advice and direct clinical consultation from a specialist team.
Give people with ME/CFS (and their family members and carers, as
appropriate) a named contact in their primary care and/or specialist team
to coordinate their
management plan,
help them access services and
support them during periods of relapse.
Children and young people
1.10.4
Provide parents and carers of
children and young people
with ME/CFS
with details of a named professional in the specialist team who they can
contact with any concerns about their
child’s
health, education or social
life.
Moving into adults' services
1.10.5
For young adults with ME/CFS moving from children's to adults’ services,
manage transitions in line with the
NICE guideline on transition from
children's to adults' services for young people using health or social care
services.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on multidisciplinary care.
Full details of the evidence and the committee’s discussion are in
evidence
review I: multidisciplinary care, evidence review C: access to care.
Other
supporting evidence and discussion can be found in
evidence review A:
information for people with ME/CFS and appendix 1: children and young people
with ME/CFS.
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1.11
Managing ME/CFS
Refer to relevant NICE guidance for managing symptoms associated with ME/CFS
that are not covered in this section.
1.11.1
Be aware there is no current treatment or cure (non-pharmacological or
pharmacological) for ME/CFS.
For a short explanation of why the committee made this recommendation see the
rationale and impact section on managing ME/CFS.
Full details of the evidence and the committee’s discussion are in
evidence
review F: pharmacological management and evidence review G: non
pharmacological management.
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7
8
9
10
11
12
13
14
15
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18
19
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21
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23
24
Energy management
1.11.2
Discuss with people with ME/CFS the principles of
energy management,
its role in supporting them to live with their symptoms, the potential
benefits and risks and what they should expect. Explain that it:
•
is not curative
•
is a self-management strategy led by the person themselves but with
support from a healthcare professional
•
can be applied to any type of
activity
•
helps people understand their
energy envelope
so they can reduce the
risk of overexertion worsening their symptoms
•
recognises that each person has a different and fluctuating energy limit,
and they are the best judge of their own limits
•
can include help from a healthcare professional to recognise when they
are approaching their limit (children
and young people
in particular may
find it harder to judge their limits and can overreach them)
•
uses a flexible, tailored approach so that activity is never automatically
increased but is progressed during periods when symptoms are
improved and allows for the need to pull back when symptoms are
worse
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1.11.7
1.11.6
1.11.5
1.11.4
1.11.3
•
is a long-term approach
− it can take weeks, months or sometimes
even years to reach stabilisation or to increase tolerance or activity
•
does not assume that deconditioning is the cause of ME/CFS.
Carry out an assessment to help people with ME/CFS develop an energy
management plan with realistic expectations and goals that are
meaningful to them. Discuss and record
the person’s:
•
cognitive activity
•
mobility and other
physical activity
•
ability to undertake activities of daily living
•
emotional demands
•
social activity, including relationships
•
rest and relaxation (both quality and duration)
•
sleep quality and duration
•
anything else that is important to the person.
Based on the
person’s
assessment, establish an individual activity pattern
within their current energy envelope that minimises their symptoms. For
example:
•
reduce activity as the first step
•
plan periods of rest and activity, and incorporate the need for pre-
emptive rest
•
alternate and vary between different types of activity and break
activities into small chunks.
Agree how often to review the
person’s
energy management plan with
them and revise it if needed.
Advise people with ME/CFS to reduce their activity if increasing it triggers
symptoms, or if they have fluctuations in their daily energy levels.
Make self-monitoring of activity as easy as possible by taking advantage
of any tools the person already uses, such as an activity tracker, phone
heart-rate monitor or diary.
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1.11.10
1.11.8
Refer people with ME/CFS to a specialist ME/CFS physiotherapy or
occupational therapy service if they:
•
have had reduced physical activity or mobility levels for a long time
•
are ready to progress their physical activity beyond their current
activities of daily living
•
would like to incorporate a physical activity programme into the
management of their ME/CFS.
People with severe or very severe ME/CFS
1.11.9
Refer people with
severe or very severe ME/CFS
to a specialist ME/CFS
physiotherapy or occupational therapy service for support on developing
energy management plans.
Be aware when agreeing energy management plans with people with
severe or very severe ME/CFS (and their families and carers as
appropriate) that changes in activity should be smaller and any increases
(if possible) much slower.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on energy management.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management.
Other supporting evidence and
discussion can be found in
evidence review A: information for people with ME/CFS
and appendix 2: people with severe ME/CFS.
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17
18
19
20
21
22
Physical maintenance
1.11.11
Include
physical maintenance
in the
management plan
for people with
ME/CFS. Think about including the following:
•
joint mobility
•
muscle flexibility
•
postural and positional support
•
muscle strength and endurance
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1.11.14
1.11.13
1.11.12
•
bone health
•
cardiovascular health.
Assess people with severe or very severe ME/CFS at every contact for:
•
areas at risk of pressure ulcers (see the
NICE guideline on pressure
ulcers)
•
deep vein thrombosis
•
risk of contractures.
Give people and their families and carers (as appropriate) advice and
support on how to recognise and prevent possible complications of long-
term immobility, including contractures, pressure ulcers (see the NICE
guideline on pressure ulcers), deep vein thrombosis (see the
NICE
guideline on venous thromboembolic diseases)
and osteoporosis (see the
NICE guideline on osteoporosis).
Give families and carers (if appropriate) advice and support on how to
help the person with ME/CFS follow their management plan in relation to
physical maintenance and mobility. This may include bed mobility, moving
from lying to sitting to standing, transferring from bed to chair, use of
mobility aids, walking, joint mobility, muscle stretching, muscle strength,
balance, and going up and down stairs.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on physical maintenance.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management.
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21
22
23
24
Physical activity
1.11.15
Do not advise people with ME/CFS to undertake unstructured
exercise
that is not part of a supervised programme, such as telling them to go to
the gym or exercise more, because this may worsen their symptoms.
1.11.16
Do not offer people with ME/CFS:
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29
1.11.20
1.11.19
1.11.18
1.11.17
•
any therapy based on
physical activity
or exercise as a treatment or
cure for ME/CFS
•
generalised physical activity or exercise programmes
–
this includes
programmes developed for healthy people or people with other
illnesses
•
any programme based on fixed incremental increases in physical
activity or exercise, for example graded exercise therapy
•
structured activity or exercise programmes that are based on
deconditioning as the cause of ME/CFS
•
therapies derived from osteopathy, life coaching and neurolinguistic
programming (for example the Lightning Process).
Only consider a physical activity programme for people with ME/CFS who
are ready to progress their physical activity beyond their current activities
of daily living, or would like to incorporate physical activity into the
management of their ME/CFS.
A physical activity programme, if offered, should only be delivered or
overseen by a physiotherapist or occupational therapist with training and
expertise in ME/CFS.
Tell people about the risks and benefits of a physical activity programme.
Explain that some people with ME/CFS have found that physical activity
programmes can make their symptoms worsen, for some people it makes
no difference and others find them helpful.
If a physical activity programme is agreed with the person with ME/CFS, it
should be personalised and should:
•
establish their physical activity baseline at a level that does not worsen
their symptoms
•
start by reducing
the person’s
activity to within their energy envelope
•
be possible to maintain it successfully before attempting to increase
physical ability
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1.11.22
1.11.21
•
use flexible increments for people who want to focus on improving their
physical abilities while remaining within their energy envelope
•
recognise a
flare
or
relapse
early and outline how to manage it (see
recommendations 1.11.21 and 1.11.22)
•
incorporate regular reviews.
Agree with the person how to adjust their physical activity after a flare or
relapse. This should include:
•
providing access to support from the specialist ME/CFS physiotherapy
service
•
reducing physical activity
within the person’s
current energy envelope
to stabilise their symptoms
•
only once symptoms stabilise and the person feels able to resume
physical activity, establishing a new physical activity baseline.
Advise people with ME/CFS after a flare that the time it takes to return to
the level of physical activity they had before the flare varies from person to
person.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on physical activity.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management, evidence review A: information for
people with ME/CFS and appendix 1: children and young people.
17
18
19
20
21
22
Rest and sleep
1.11.23
Advise people with ME/CFS:
•
on the role of rest in ME/CFS
•
that rest periods are part of all management strategies for ME/CFS
•
how to introduce rest periods into their daily routine, including how
often and for how long, as appropriate for each person
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1
2
•
that relaxation techniques at the beginning of each rest period could be
helpful.
For a short explanation of why the committee made this recommendation see the
rationale and impact section on rest and sleep.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management.
3
4
5
6
7
8
9
10
11
12
Managing orthostatic intolerance
1.11.24
Be aware that people with ME/CFS may experience
orthostatic
intolerance,
such as postural orthostatic tachycardia syndrome (POTS),
orthostatic hypotension or neurally mediated hypotension.
1.11.25
Medicine for orthostatic intolerance in people with ME/CFS should only be
prescribed or overseen by a healthcare professional with expertise in
orthostatic intolerance.
1.11.26
Refer people with orthostatic intolerance to secondary care if their
symptoms are severe or worsening, or there are concerns that another
condition may be the cause.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on orthostatic intolerance.
Full details of the evidence and the committee’s discussion
are in
evidence
review G: non pharmacological management.
13
14
15
16
Managing pain
1.11.27
Refer to the following for advice on treating pain:
•
NICE guideline on neuropathic pain in adults
•
NICE guideline on headaches in over 12s.
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For a short explanation of why the committee made this recommendation see the
rationale and impact section on managing pain.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management.
1
2
3
4
Managing nausea
1.11.28
Encourage people with ME/CFS who have nausea to keep up adequate
fluid intake and advise them to try to eat regularly, taking small amounts
often.
For a short explanation of why the committee made this recommendation see the
rationale and impact section on managing nausea.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management.
5
6
7
8
9
10
11
12
13
14
15
16
17
Medicines
1.11.29
Do not offer any medicines or supplements to treat or cure ME/CFS.
Medicines for symptom management
1.11.30
Offer people with ME/CFS a medication review in line with the
NICE
guidelines on medicines adherence
and
medicines optimisation.
1.11.31
Take into account when prescribing that people with ME/CFS may be
more intolerant of drug treatment and have more severe adverse effects.
Consider:
•
starting drug treatments at a lower dose than in usual clinical practice
•
gradually increasing the dose if the drug is tolerated.
1.11.32
Drug treatment for the symptoms associated with ME/CFS for children
and young people should only be started under guidance or supervision
from a paediatrician.
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For a short explanation of why the committee made these recommendations see
the
rationale and impact section on medicines, including medicines for symptom
management.
Full details of the evidence and the committee’s discussion are in
evidence
review F: pharmacological management.
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
Dietary management and strategies
1.11.33
Emphasise to people with ME/CFS the importance of adequate fluid
intake and a well-balanced diet according to the
NHS eat well guide.
1.11.34
Work with the person (and their family members or carers, as appropriate)
to find ways of minimising complications caused by nausea (see
recommendation 1.11.28), swallowing problems, sore throat or difficulties
with buying, preparing and eating food.
1.11.35
Refer people with ME/CFS for a dietetic assessment by a dietitian who
specialises in ME/CFS if they are losing weight and at risk of malnutrition,
or they have a restrictive diet.
1.11.36
Be aware that people with ME/CFS may be at risk of vitamin D deficiency
because they spend a lot of time indoors, especially those who are
housebound or bed-bound. For advice on vitamin D supplementation, see
the
NICE guideline on vitamin D.
1.11.37
Explain to people with ME/CFS that there is not enough evidence to
support routinely taking vitamin and mineral supplements as either a
treatment for ME/CFS or for managing symptoms. If they are advised to
take a supplement it should be a multivitamin and mineral supplement and
they should stay within the recommended daily amount. Explain the
potential side effects of taking higher doses of vitamins and minerals.
1.11.38
Refer children and young people with ME/CFS who are losing weight or
have faltering growth or dietary restrictions to a paediatric dietitian who
specialises in ME/CFS.
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2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
1.11.42
1.11.41
1.11.39
For advice on food allergies in children, see the
NICE guideline on food
allergy in under 19s.
People with severe or very severe ME/CFS
1.11.40
Refer people with severe or very severe ME/CFS for a dietetic
assessment by a dietitian who specialises in ME/CFS.
Monitor people with severe or very severe ME/CFS who are at risk of
malnutrition or unintentional weight loss because of:
•
restrictive diets
•
poor appetite linked with altered taste and smell
•
food intolerances
•
nausea or difficulty swallowing and chewing.
Follow the recommendations on screening for malnutrition, indications for
nutrition support, and education and training of staff and carers related to
nutrition, in the
NICE guideline on nutrition support for adults.
Consider advice to support people with severe or very severe ME/CFS,
which could include:
•
eating little and often
•
having nourishing drinks and snacks, including food fortification
•
finding easier ways of eating to conserve energy, such as food with
softer textures
•
using modified eating aids, particularly if someone has difficulty
chewing or swallowing
•
oral nutrition support and enteral feeding.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on dietary management and strategies.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management.
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2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
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19
20
21
22
23
24
25
26
27
28
29
30
1.11.47
1.11.46
1.11.45
1.11.44
Psychological support: cognitive behavioural therapy
1.11.43
Only offer cognitive behavioural therapy (CBT) to people with ME/CFS
who would like to use it to support them in managing their symptoms of
ME/CFS and to reduce the psychological distress associated with having
a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS.
CBT should be only delivered by a healthcare professional with
appropriate training and experience in CBT for ME/CFS, and under the
clinical supervision of someone with expertise in CBT for ME/CFS.
Discuss with the person the principles of CBT, its role in supporting them
to adapt to and manage the impact of symptoms of ME/CFS and the
potential benefits and risks. Explain that CBT for people with ME/CFS:
•
is not curative
•
is designed to improve wellbeing and quality of life
•
aims to improve functioning and reduce the psychological distress
associated with having a chronic illness
•
does not assume people have ‘abnormal’ illness beliefs and behaviours
as an underlying cause of their ME/CFS, but recognises that thoughts,
feelings, behaviours and physiology interact with each other
•
takes a non-judgemental, supportive approach to the person's
experience of their symptoms and the challenges these present.
Explain what CBT involves so people know what to expect. Tell them that
it:
•
is a collaborative, structured, time-limited intervention that focuses on
the difficulties people are having at that time
•
involves working closely with their therapist to establish strategies that
help the person to work towards meaningful goals and priorities that
they have chosen themselves
•
takes into account how symptoms are individual to the person, can
fluctuate in severity and may change over time.
CBT for people with ME/CFS should include the following components:
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2
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5
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7
8
9
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19
20
21
22
23
24
25
26
1.11.49
•
developing a shared understanding with the person about the main
difficulties and challenges they face
•
exploring their personal meaning of symptoms and illness, and how this
might relate to how they manage their symptoms
•
working together to adapt and refine self-management strategies to
improve
the person’s
functioning and quality of life, for example their
sleep, activity and rest
•
developing a self-management plan
•
reviewing their plan regularly to see if their self-management strategies
need to be adapted, for example if their symptoms or functioning
change
•
developing a
therapy blueprint
collaboratively with their therapist at the
end of therapy.
Children and young people
1.11.48
Only consider CBT for a child or young person with ME/CFS if they and
their parents or carers have been fully informed about its aims and
principles and any potential benefits and risks.
If CBT is considered for children and young people with ME/CFS:
•
involve parents or carers in the therapy wherever possible
•
adapt therapy
to the child or young person’s
cognitive and emotional
stage of development.
People with severe or very severe ME/CFS
1.11.50
Healthcare professionals delivering CBT to a person with severe or very
severe ME/CFS should adjust the process and pace of CBT to meet the
person’s needs.
This might include shorter, less frequent sessions and
longer-term goals.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on psychological support: cognitive behavioural
therapy.
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Full details of the evidence and the committee’s discussion are in
evidence
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ME/CFS.
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2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
1.12
1.12.1
Managing coexisting conditions
Take into account the recommendations in the
section on principles of
care for people with ME/CFS
and
section on access to care
when
managing coexisting conditions in people with ME/CFS.
1.12.2
Be aware that other conditions may coexist with ME/CFS and should be
investigated and managed in accordance with best practice.
1.12.3
For recommendations on multimorbidity, thyroid disease and coeliac
disease refer to the:
•
NICE guideline on multimorbidity
•
NICE guideline on thyroid disease
•
NICE guideline on coeliac disease.
1.12.4
For recommendations on identifying and treating associated or comorbid
anxiety, depression or mood disorders see the:
•
NICE guideline on depression in adults
•
NICE guideline on depression in adults with a chronic physical health
problem
•
NICE guideline on depression in children and young people
•
NICE guideline on generalised anxiety disorder and panic disorder in
adults
•
NICE guideline on common mental health problems.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on managing coexisting conditions.
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Full details of the evidence and the committee’s discussion are in
evidence
review D: diagnosis.
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2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
1.13
Flares
1.13.1
Managing flares and relapse
Recognise a
flare
in symptoms of ME/CFS when there is a sustained
exacerbation of symptoms to a level greater than the person’s usual day-
to-day variation, which usually lasts a few days.
1.13.2
Respond promptly to a flare in symptoms by:
•
identifying possible triggers, such as acute illness or overexertion (in
some cases there may be no clear trigger)
•
temporarily reducing
activity
levels
•
monitoring symptoms, recognising that although flares are transient,
some will develop into a
relapse
•
not increasing activity levels until the flare has resolved (see the
relapse section if flare is prolonged).
Relapse
1.13.3
Recognise a relapse when there is a sustained and marked exacerbation
of ME/CFS symptoms lasting longer than a flare and needing substantial
and sustained adjustment of
energy management.
1.13.4
When a person with ME/CFS has a relapse, review their
management
plan
with them and discuss and agree a course of action, taking into
account:
•
possible causes of the relapse, if known
•
the nature of the symptoms
•
the severity and duration of the relapse (bearing in mind this can be
years).
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21
1.13.7
1.13.6
1.13.5
During a relapse, discuss and agree with the person with ME/CFS (and
their family members or carers, as appropriate):
•
reducing, or even stopping, some activities
•
increasing the frequency or duration of rest periods
•
re-establishing a new
energy envelope
to stabilise symptoms.
If a flare or relapse cannot be managed using the person's self-
management strategies outlined in their management plan, advise the
person to contact their named contact in the primary care or specialist
team for review.
Once a flare or relapse has resolved or stabilised, discuss with the
person:
•
whether their management plan needs to be reviewed and adjusted to
reflect their current symptoms and energy envelope, because this may
be different from before the flare or relapse (for people participating in
physical activity
programmes see
recommendations 1.11.21 and
1.11.22)
•
their experience of the flare or relapse to determine, if possible,
whether strategies can be put in place to manage potential triggers in
the future
•
investigate any new symptoms that may have caused the flare or
relapse.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on managing flares and relapse.
Full details of the evidence and the committee’s discussion are in
evidence
review G: non pharmacological management.
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2
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7
8
9
10
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12
13
14
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16
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19
20
21
22
23
24
25
26
27
28
29
1.14.5
1.14.4
1.14.3
1.14.2
1.14
1.14.1
Review
Offer adults with ME/CFS a review of their care and
management plan
in
primary care at least once a year (see recommendation 1.14.3 for what to
review).
Arrange more frequent primary care reviews for people with ME/CFS as
needed, depending on the severity and complexity of their symptoms, and
the effectiveness of any symptom management.
When undertaking a review in primary care, ensure you have access to
the person’s management plan
and (if relevant) discharge letter from the
specialist ME/CF team. As part of the review, discuss with the person with
ME/CFS (and their family members and carers, as appropriate) and
record as a minimum:
•
their condition, including any changes and the impact of these,
including what can and cannot be achieved
•
symptoms, including whether they have experienced new symptoms
•
self-management
−
ask about
activity
management strategies
•
who is helping them and how they provide support
•
emotional and social wellbeing
•
any future plans
−
ask if the person is considering any changes or if
they have any challenges ahead.
Refer the person with ME/CFS to their named contact in the specialist
team if there are any new or deteriorating aspects of their condition.
Consider seeking advice from an appropriate specialist if there is
uncertainty about interpreting signs and symptoms and whether a referral
is needed.
Children and young people
1.14.6
Offer
children and young people
with ME/CFS a review of their care and
management plan at least every 6 months (see recommendation 1.14.3
for what to review).
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8
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10
1.14.8
1.14.7
When deciding on how often reviews or reassessment might be needed
for children and young people with ME/CFS, take into account:
•
their developmental stage
•
transitions, such as changing schools or exams
•
the severity and complexity of symptoms
•
the effectiveness of any symptom management.
Ensure reviews are carried out or overseen by a paediatrician with
expertise in ME/CFS. Involve other appropriate specialists as needed.
Also see
recommendation 1.1.7 on ensuring the child's voice is heard and on
involving their parents or carers.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on review.
Full details of the evidence and the committee’s discussion are
in
evidence
review J: review of care.
11
12
13
14
15
16
17
18
19
20
21
22
23
1.15
1.15.1
Training for health and social care professionals
Health and care providers should provide access to training that reflects
current knowledge in ME/CFS (including understanding what ME/CFS is,
diagnosis and management) for all health and social care staff who deliver
care to people with ME/CFS.
1.15.2
Ensure that training programmes on ME/CFS:
•
provide evidence-based content and training methods (developed and
supported by specialist services with input from people with ME/CFS)
•
are run by trainers with relevant skills, knowledge and experience
•
include monitoring, using relevant competency frameworks or
assessment for the area of training
•
represent the experiences of people with ME/CFS, using video and
other resources.
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2
3
4
1.15.3
Health and social care professionals who provide care for people with
ME/CFS should undertake training that reflects current knowledge and
maintain continuous professional development in ME/CFS relevant to their
role so that they provide care in line with this guideline.
For a short explanation of why the committee made these recommendations see
the
rationale and impact section on training for health and social care
professionals.
Full details of the evidence and the committee’s discussion are in
evidence review
B: information for people with health and social care professionals.
Other
supporting evidence and discussion can be found in
evidence review A:
information for people with ME/CFS and appendix 2: people with severe ME/CFS.
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
Terms used in this guideline
This section defines terms that have been used in a particular way for this guideline.
For other definitions see the
NICE glossary
and the
Think Local, Act Personal Care
and Support Jargon Buster.
Activity
Activity is any effort that uses energy and includes cognitive, emotional and social
activity, as well as physical activity.
Advocate
In this guideline, the role of an advocate in health and social care is to support a
vulnerable or disadvantaged person and ensure that their rights are being upheld in
a healthcare context. They are chosen by the person with ME/CFS and can include
family members, carers, friends or an independent advocate. They make sure that
the person with ME/CFS is heard.
Carers
In this guideline, a carer refers to someone who provides unpaid care and support to
a family member, partner or friend with ME/CFS.
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2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
Children and young people
In this guideline, children and young people are aged under 18 (adults are 18 and
above).
Energy envelope
The amount of energy a person has to do all activities without triggering an increase
in their symptoms.
Energy management
A self-management
strategy that involves managing a person’s activities to stay
within their energy envelope.
Exercise
Exercise is planned, structured, repetitive and purposeful activity focused on
improvement or maintenance of one or more components of physical fitness.
Exercise is a subcategory of physical activity.
Fatigability
Fatigability in ME/CFS has the following features:
•
sick
or ‘flu-like’ fatigue, especially in the early days of the illness
•
‘wired but tired’ fatigue, or restless fatigue (it
may also include hypervigilance
during sleep)
•
low energy or a lack of physical energy to start or finish activities of daily living and
the sensation of being ‘physically drained’
•
cognitive fatigue that worsens existing cognitive difficulties
•
rapid muscle fatigue in which strength or stamina are lost quickly after starting an
activity, causing sudden weakness, clumsiness, lack of coordination, and being
unable to repeat physical effort consistently.
Flare
A flare is a worsening of symptoms, more than would be accounted for by normal
day-to-day variation, that affects the ability of the person to perform their usual
activities. Flares may occur spontaneously or be triggered by another illness,
overexertion or stress of any kind. The worsening of symptoms is transient and flares
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typically resolve after a few days (1 to 3 days), either spontaneously or in response
to temporary changes in energy management or a change in treatment.
Management plan
The personalised management plan is developed by the specialist team after the
confirmation of a diagnosis of ME/CFS and a holistic assessment. It is the basis for
other assessments and plans such as social care assessments, energy
management, physical maintenance, physical activity, cognitive behavioural therapy
(CBT) and dietary management.
Mild ME/CFS
People with mild ME/CFS are mobile, can care for themselves and can do light
domestic tasks with difficulty. Most are still working or in education, but to do this
they have probably stopped all leisure and social pursuits. They often take days off
or use the weekend to cope with the rest of the week.
Moderate ME/CFS
People with moderate ME/CFS have reduced mobility and are restricted in all
activities of daily living, although they may have peaks and troughs in their level of
symptoms and ability to do activities. They have usually stopped work, school or
college and need rest periods, often resting in the afternoon for 1 or 2 hours. Their
sleep at night is generally poor quality and disturbed.
Orthostatic intolerance
The inability to regulate blood pressure and cerebral blood flow when upright, usually
when standing, but it can also occur when sitting. It may lead to postural tachycardia,
hypotension and alterations in consciousness (such as fainting). This may include
postural orthostatic tachycardia syndrome (a significant rise in pulse rate when
moving from lying to standing) and postural hypotension (a significant fall in blood
pressure when moving from lying to standing).
Physical activity
Physical activity is defined as any bodily movement produced by skeletal muscles
that results in energy expenditure. Physical activity should not be confused with
exercise
which is a subcategory of physical activity. Physical activity in daily life can
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be categorised into occupational, sports, conditioning, household, or other activities,
and can be done during leisure time, to get around or as part of a person’s work. For
many people, physical activity has a health benefit but in people with ME/CFS
physical activity may make their symptoms worsen. See the
World Health
Organization advice on physical activity.
Physical maintenance
Physical maintenance is the process of incorporating into daily activity a level of
movement that does not exacerbate symptoms and ensures that joint and muscle
flexibility does not deteriorate further than that caused by the condition so far. For
many people with ME/CFS, this will be to ensure as much independence as possible
in activities ranging from personal hygiene to daily living, working and social
interactions. For the most severely affected, it may only be passive movements,
which aim to maintain joint flexibility and gently stretch muscle groups to avoid
contractures developing. For some people with ME/CFS it can include physical
activity which additionally assists bone health, posture and muscle strength. Such
activity is undertaken within the
person’s
energy envelope and avoids pushing
through boundaries of tolerance.
Post-exertional symptom exacerbation
The worsening of symptoms that can follow minimal cognitive, physical, emotional or
social activity, or activity that could previously be tolerated. Symptoms typically
worsen 12 to 48 hours after activity and can last for days or even weeks. This is also
referred to as post-exertional malaise.
Relapse
A relapse is a sustained and marked exacerbation of symptoms lasting longer than a
flare
and needing a substantial and sustained adjustment to the person’s energy
management. It may not be clear in the early stages of a symptom exacerbation
whether it is a flare or a relapse.
The person’s symptoms and level of disability may
be similar to illness onset. Relapses can lead to a long-term reduction
in the person’s
energy envelope.
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Severe or very severe ME/CFS
People with severe ME/CFS are unable to do any activity for themselves or can carry
out minimal daily tasks only (such as face washing or cleaning teeth). They have
severe cognitive difficulties and may depend on a wheelchair for mobility. They are
often unable to leave the house or have a severe and prolonged after-effect if they
do so. They may also spend most of their time in bed and are often extremely
sensitive to light and noise.
People with very severe ME/CFS are in bed all day and dependent on care. They
need help with personal hygiene and eating and are very sensitive to sensory stimuli.
Some people may not be able to swallow and may need to be tube fed.
Therapy blueprint
This summarises the therapy and provide a basis for future independent self-
management. The blueprint may include the therapy formulation, strategies that
have been helpful, 'warning signs' and triggers of flares and how to manage them,
and goals for the future. It is important that the therapy blueprint is led by the person
themselves and is in their own words, supported by guidance from the therapist.
Unrefreshing sleep
Unrefreshing sleep is described as a light sleep. Even after a full night’s sleep people
do not feel rested. People with ME/CFS often report waking up exhausted and
feeling as if they have not slept at all, no matter how long they were asleep.
Recommendations for research
The guideline committee has made the following recommendations for research.
Key recommendations for research
1 Diagnostic tests
What diagnostic tests are clinically and cost effective in people with suspected
ME/CFS?
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For a short explanation of why the committee made this recommendation see the
rationale section on diagnosis.
Full details of the evidence and the committee’s discussion are in
evidence
review D: diagnosis.
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2 A core outcome set
What core set of relevant health outcome measures should be used for trials of
treatments for ME/CFS and managing symptoms of ME/CFS?
For a short explanation of why the committee made this recommendation see the
rationale section on managing ME/CFS.
Full details of the evidence and the committee’s discussion are in
evidence review
G: non pharmacological management.
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5
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7
Other recommendations for research
Diagnostic criteria
In people with suspected ME/CFS, what criteria should be used to establish a clinical
diagnosis?
For a short explanation of why the committee made this recommendation see the
rationale section on diagnosis.
Full details of the evidence and the committee’s discussion are in
evidence
review D: diagnosis.
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Self-monitoring management strategies
What is the clinical and cost effectiveness of self-monitoring techniques in guiding
energy management in ME/CFS?
For a short explanation of why the committee made this recommendation see the
rationale section on energy management.
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Full details of the evidence and the committee’s discussion are in
evidence review
G: non pharmacological management.
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3
Sleep management strategies
What is the clinical and cost effectiveness of sleep management strategies in
managing ME/CFS?
For a short explanation of why the committee made this recommendation see the
rationale section on rest and sleep.
Full details of the evidence and the committee’s discussion are in
evidence review
G: non pharmacological management.
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5
6
Dietary strategies
What is the clinical and cost effectiveness of dietary strategies in managing
ME/CFS?
For a short explanation of why the committee made this recommendation see the
rationale section on dietary management and strategies.
Full details of the evidence and the committee’s discussion are in
evidence review
G: non pharmacological management.
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Rationale and impact
These sections briefly explain why the committee made the recommendations and
how they might affect practice.
Principles of care for people with ME/CFS
Recommendations 1.1.1 to 1.1.11
Why the committee made the recommendations
Common themes across the qualitative evidence showed a lack of belief about
ME/CFS as a real condition by health and social care professionals, and a lack of
understanding about what it is and the impact it has. The committee used this
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evidence to make recommendations to raise awareness about ME/CFS. One strong
theme showed how experiencing a lack of understanding and prejudice can lead to
people losing trust in health and social care services. The committee agreed that
health and social care professionals need to take into account the impact of not
being believed when building relationships with people with ME/CFS and their
families. The committee considered this particularly relevant to children and young
people and made separate recommendations highlighting communication with
children.
The evidence showed this loss of trust can be compounded when people with
ME/CFS have negative experiences of healthcare services if they decline treatments
that have been offered to them. This was a strong theme in the evidence for children
and young people. The committee agreed that declining a specific treatment should
not affect other areas of the person’s
care.
The qualitative evidence also showed that one of the barriers to good ME/CFS
management was a late diagnosis and a lack of monitoring, and this reflected the
committee’s experience.
Evidence relating to people
with severe ME/CFS reinforced the committee’s
experience that this group of people are often neglected, and the severity of their
symptoms misunderstood. The committee made recommendations on the symptoms
experienced by people with severe or very severe ME/CFS and what this means
when providing care.
How the recommendations might affect practice
These overarching principles will improve consistency of best practice and do not
need any additional resources to deliver.
Return to recommendations
Suspecting ME/CFS
Recommendations 1.2.1 to 1.2.8
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Why the committee made the recommendations
The committee took into account both the lack of evidence on diagnostic tests and
the evidence that people value realistic advice about ME/CFS (particularly around
diagnosis) when making the recommendation to explain how the condition is
recognised.
In outlining key areas for assessment, the committee agreed that although they
could not give a list of standard tests, it was important to carry out baseline
investigations to exclude other potential diagnoses, although this should not affect a
provisional diagnosis of ME/CFS.
The committee acknowledged there is ongoing discussion in the ME/CFS community
about which diagnostic criteria should be used to diagnose ME/CFS. Based on both
the evidence and their experience, the committee agreed that the Institute of
Medicine’s 2015 criteria had the best balance of inclusion and exclusion of all the
reviewed criteria, but it needed to be adapted for optimal use. In particular, the
committee felt that the 6-month delay should be reduced so that management could
start earlier, and that fatigue and post-exertional symptom exacerbation should be
defined clearly to make it easier to interpret the revised criteria.
Based on their experience, the committee decided that people should be given a
provisional diagnosis of ME/CFS if they have all the 4 key symptoms (debilitating
fatigability, post-exertional symptom exacerbation, unrefreshing sleep and cognitive
difficulties) for a minimum of 6 weeks in adults and 4 weeks in children and young
people. The committee agreed it would be unusual for an acute illness, including a
viral illness, to persist longer than 6 weeks in an adult and 4 weeks in a child or
young person with all 4 key symptoms. They emphasised it is the combination and
interaction of the symptoms that is critical in distinguishing ME/CFS from other
conditions and illness.
In addition to the 4 key symptoms, the committee noted that many of the criteria
used to define ME/CFS also include other symptoms that are commonly experienced
by people with ME/CFS. They agreed that although these symptoms are not crucial
to a diagnosis, they are important for understanding ME/CFS and helping to manage
symptoms, so they made a recommendation to raise awareness of them.
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The evidence and the committee’s experience suggested that managing symptoms
early may prevent them getting worse and the person’s health deteriorating.
To
reflect this the committee recommended advice on symptom management for people
as soon as ME/CFS is suspected.
The committee discussed the non-specific nature and common presentation of some
ME/CFS symptoms (for example, cognitive difficulties such as brain fog), which
make it difficult to diagnose and distinguish from other conditions. This has led to
misdiagnosis, missed diagnosis, and delays in the diagnosis of ME/CFS and of other
conditions. Because of this, the committee agreed it is important that when a
healthcare professional suspects ME/CFS, they should also consider alternative
explanatory diagnoses or coexisting conditions. They should appropriately
investigate these and refer to a specialist if they are unsure.
The committee agreed that to avoid any disruption to education, once ME/CFS is
suspected in a child or young person their place of education should be contacted to
advise about flexible adjustments or adaptations.
How the recommendations might affect practice
There is variation in practice, and no one set of criteria is used clinically,
with a ‘mix
and match’ approach used alongside clinical experience.
These recommendations
will standardise practice and it is not believed they will have any impact on resource
use or training.
The recommendations aim to raise awareness of symptoms and associated
conditions that should raise suspicion of ME/CFS, particularly among healthcare
professionals with limited knowledge about ME/CFS. This could increase the number
of people with suspected ME/CFS who are then referred to a specialist service but
will help to ensure they get appropriate care and substantially better outcomes.
The recommendation that children and young people with suspected ME/CFS should
be referred to a paediatrician after 4 weeks is earlier than current practice. However,
referring earlier for further assessment will help children and young people with
ME/CFS to get appropriate care sooner, improving their outcomes.
Return to recommendations
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Advice for people with suspected ME/CFS
Recommendations 1.3.1 and 1.3.2
Why the committee made the recommendations
There was limited clinical evidence on management strategies for people with
suspected ME/CFS. The qualitative evidence and the committee’s experience
suggested that managing symptoms early may prevent them getting worse and the
person’s health deteriorating.
To reflect this, the committee made a recommendation
to give people advice on symptom management drawn from their own knowledge
and experience.
The qualitative evidence suggested this can be an anxious time for people with
suspected ME/CFS and the committee agreed it was important for people to know
who to contact if their symptoms change.
How the recommendations might affect practice
Providing the advice in these recommendations would not impose a significant cost
on the NHS. If this advice leads to fewer people with deteriorating symptoms, the
recommendations would be highly cost effective.
Return to recommendations
Diagnosis
Recommendations 1.4.1 to 1.4.3
Why the committee made the recommendations
Making a diagnosis
The committee agreed that although a 6-month delay before diagnosis is built into
the Institute of Medicine criteria, the criteria could be safely amended by reducing
this period to 3 months. The committee saw removing this delay as useful because it
might enable earlier management and could potentially improve longer-term
outcomes.
Reflecting the common theme across the evidence about a lack of knowledge of
ME/CFS and evidence that non-specialists in ME/CFS are not confident about
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diagnosing and managing ME/CFS, the committee recommended referring people
with ME/CFS to a ME/CFS specialist team at 3 months to confirm their diagnosis and
develop a management plan.
Diagnostic criteria
The committee made a recommendation for key symptoms based on the evidence
review of the current diagnostic criteria but no one criteria was agreed to be better
overall. There is an ongoing discussion in the ME/CFS community about which
diagnostic criteria are best and which should be used in the identification and
diagnosis of ME/CFS. The factors influencing these discussions are the broadness
of the inclusion criteria, the definition of some of the symptoms, and the usability of
the criteria as a clinical tool. There are concerns that many of the existing criteria do
not accurately identify people with or without ME/CFS. Currently there is no validated
diagnostic criteria for ME/CFS, and this leads to confusion about which criteria to
use. The committee agreed to make a
recommendation for research on diagnostic
criteria
to inform future guidance.
Diagnostic tests
No evidence was identified for any tests or specific signs and symptoms as
predictors of a later diagnosis of ME/CFS. Accurate diagnostic tests that correctly
identify ME/CFS will support healthcare professionals to identify people who have
ME/CFS and rule out those who do not. The committee decided to make a
recommendation for research on diagnostic tests
to help identify effective diagnostic
tests for ME/CFS that will facilitate early diagnosis and potentially lead to better
outcomes for people with ME/CFS. They hoped this research would inform future
guidance.
How the recommendations might affect practice
There will be no change to the current practice of diagnosing ME/CFS based on
clinical assessment and history and performing tests for differential diagnoses as
appropriate.
The duration of symptoms before diagnosis can take place has been reduced but the
criteria are now stricter, requiring that 4 different sets of symptoms are all present in
order to suspect ME/CFS. The impact therefore will not necessarily be an increase in
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referrals but for people to receive their diagnosis earlier, which will bring forward their
assessment and care plan. Earlier access to appropriate advice and care could
prevent disease progression and therefore reduce resource use in the longer term.
Return to recommendations
Assessment and care planning by a specialist ME/CFS team
Recommendations 1.5.1 to 1.5.5
Why the committee made the recommendations
The committee agreed that the key to managing ME/CFS symptoms successfully is
having a personalised management plan, which should be developed as soon as the
person’s diagnosis is confirmed. A copy of this plan can be shared with primary care
and a copy held by the person themselves and it can be referred to in situations such
as planning an admission to hospital. In
the committee’s experience,
this approach
to assessment and planning is common in specialist ME/CFS services.
The committee outlined key areas to assess what support might be needed, based
on their experience. The committee noted that the key areas to assess and the
support needed will depend on the person’s severity of ME/CFS, the impact of their
symptoms and their needs. Someone with
mild ME/CFS
will not need as much
support as someone with severe or very severe ME/CFS. Once the overall
management plan is agreed, it then provides a basis for the more detailed
assessments and plans outlined in specific interventions in the guideline, such as
social care assessments, energy management, physical maintenance, CBT and
dietary management. Each of these assessments and plans outlines the important
considerations for each person in these areas of care.
Based on the evidence about problems with accessing services, the committee
made a recommendation for home visits to people with severe and very severe
ME/CFS to carry out the assessment.
The qualitative evidence highlighted the importance of a collaborative relationship
between the person with ME/CFS and their healthcare professional, and the
committee made a recommendation to emphasise this.
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How the recommendations might affect practice
Carrying out a holistic assessment and developing a management plan are already
current practice in specialist services, although there may be more referrals and
people to develop plans for. However, having a management plan will facilitate
people’s
care and lead to better outcomes. If assessment is carried out early and a
care plan is implemented, it could reduce resource use in the longer term by
preventing progression of disease.
There may be an increased number of home visits for people with severe or very
severe ME/CFS. However, this will provide equity of access to care for this group
who are usually housebound. The emphasis in this guideline on early diagnosis and
referral to a specialist team for a personalised care plan has the aim of minimising
the number of people who may progress to severe ME/CFS.
Return to recommendations
Information and support
Recommendations 1.6.1 to 1.6.12
Why the committee made the recommendations
Qualitative evidence showed that people with ME/CFS valued information from
health and social care practitioners in formats that took into account the way
symptoms such as ‘brain fog’
affected their capacity to take in and remember
information. The committee highlighted formats that were reported as useful.
The evidence showed people with ME/CFS and their families and carers valued
general information about ME/CFS that they could use themselves and share with
others (families, friends, employers and practitioners), particularly around the time of
diagnosis and the early stages of ME/CFS. This enabled them to develop accurate
expectations about the future, relieve distress caused by the general lack of
information and educate others. The evidence suggested people with ME/CFS
wanted realistic information about what ME/CFS is and how it might affect them in
the future, and this formed the basis of the recommendations outlining the key
characteristics of ME/CFS. The recommendation noting that the long-term outlook
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can be better in children and young people
was based on the committee’s
experience.
The evidence supported the
committee’s
view that information about ME/CFS and
advice about other support is not easily available from health and social care
services, and they agreed that people would benefit from information from local and
national support groups.
Evidence suggested that people with ME/CFS needed practical support both for
themselves and their carers. The committee considered that some people may have
reservations about engaging with social care, after experiencing disbelief about their
illness and the impact it has on their day-to-day functioning. For this reason, the
committee emphasised the need for sensitivity when talking to people and their
families about social care support.
The committee made recommendations signposting to different assessments and
support that could be helpful. In their experience, health and social care
professionals were not always aware what support is available to families and carers
of people with ME/CFS, so the committee also referred to the NICE guideline on
supporting adult carers.
How the recommendations might affect practice
The recommendations are in line with the general principles for providing information
already established in the existing NICE guideline on patient experience in the NHS
and so were not considered likely to have any additional impact on practice.
Return to recommendations
Safeguarding
Recommendations 1.7.1 to 1.7.6
Why the committee made the recommendations
The committee recognised that safeguarding is a particular issue in ME/CFS in a
way that is different from other chronic illnesses and disabilities because people with
ME/CFS commonly report that they are not believed. No evidence was identified on
safeguarding in ME/CFS, but the committee agreed it was very important to make
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recommendations based on consensus. The recommendations address some of the
misconceptions on this topic and highlight the need for expertise in ME/CFS when
carrying out safeguarding assessments.
The committee noted that although safeguarding is not solely about children and
young people, most of the concerns they were aware of related to children and
young people with ME/CFS, so they made separate recommendations for this group.
How the recommendations might affect practice
The recommendations will improve consistency of best practice and do not need any
additional resources to deliver.
Return to recommendations
Access to care
Recommendations 1.8.1 to 1.8.11
Why the committee made the recommendations
The evidence showed that people with ME/CFS can have difficulty using healthcare
services, particularly because of physical accessibility and the time constraints of
appointments. This can make it more difficult to get the support and treatment they
need. The committee was also aware that common sensitivities in ME/CFS, such as
to light and noise, can make it challenging to travel to and attend appointments and
to receive inpatient care. The committee made recommendations to improve access
to care based on these potential barriers.
The committee discussed the unpredictable and fluctuating nature of ME/CFS and
the risk that people will be discharged from a service if they miss appointments when
their symptoms worsen. They agreed to make a recommendation based on
consensus to address the lack of awareness about this in health and social care
services.
The committee was aware that difficulties accessing care are intensified in people
with severe or very severe ME/CFS, particularly when they need hospital care. The
evidence showed that, as a result of this, some people with severe or very severe
ME/CFS have little contact with and support from health and social care services. To
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address this, the committee highlighted the flexibility and specific support needed by
people with severe or very severe ME/CFS.
Maintaining independence
There was limited evidence directly addressing the barriers and facilitators to
accessing social care. However, the committee agreed this was an important area of
care and they could draw conclusions from the evidence on healthcare and use their
own experience to make recommendations.
ME/CFS
can affect a person’s
ability to carry out activities of daily living and maintain
their independence and quality of life. The committee agreed that everyone with
ME/CFS should be asked how their symptoms affect their independence and then a
social care assessment carried out if needed. Using their experience, the committee
outlined the topics for assessment and discussion.
The committee also made further recommendations based on their own knowledge
and experience, including that:
•
many families and carers do not know the most appropriate ways to support
someone with ME/CFS and need advice on this
•
people with ME/CFS often have difficulty getting the equipment they need to
support their activities of daily living and maintain their quality of life.
How the recommendations might affect practice
Some of these recommendations might need extra staff time or other healthcare
resource use, for example to offer flexible appointments and home visits, make
adjustments during inpatient stays and provide aids and adaptations. However, for
equity reasons, people with ME/CFS need the same access to healthcare and
support as other NHS patients that is commensurate with the severity of their illness.
Return to recommendations
Supporting people with ME/CFS in work, education and training
Recommendations 1.9.1 to 1.9.6
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Why the committee made the recommendations
The evidence showed a lack of support with education and training for children and
young people with ME/CFS and their families and carers, and this can result in some
children or young people leaving education. This reflected
the committee’s
experience and they agreed that many of the themes in the evidence could also be
applied to people in work.
The common theme of lack of knowledge and understanding about ME/CFS was
echoed in this evidence with a lack of awareness about the impact that a high-
stimulus environment (such as a school) can have on someone with ME/CFS. There
was a lack of understanding about the need for a flexible approach to education with
possible adjustments. The committee agreed that better communication between
health and social care professionals and training and education services is key to
develop a shared understanding of the needs and impairments of people with
ME/CFS and how to provide them with appropriate educational support.
How the recommendations might affect practice
The recommendations will improve consistency of best practice and do not need any
additional resources to deliver.
Return to recommendations
Multidisciplinary care
Recommendations 1.10.1 to 1.10.5
Why the committee made the recommendations
There was limited evidence on the composition of a multidisciplinary team, but based
their experience, the committee agreed that good care for people with ME/CFS
results from access to an integrated team of health and social care professionals
who are trained and experienced in managing ME/CFS. The fluctuating nature of
ME/CFS means
that people’s
support needs can change, so access to different
expertise is needed at different times. The committee agreed to make
recommendations on providing a coordinated multidisciplinary approach and to
identify the expertise that should be available.
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In the committee’s experience,
care for most people with ME/CFS can be managed
in primary care after their diagnosis is confirmed and they have a management plan
agreed. However, the committee acknowledged the lack of confidence that non-
specialists can have in managing ME/CFS and they recommended support from a
ME/CFS specialist team.
The qualitative evidence showed that people with ME/CFS valued continuity of care
and the committee agreed that having a single point of contact in their care team
would avoid needing to have contact and appointments with multiple professionals
which, for some people, could worsen their health.
How the recommendations might affect practice
The recommendations on the specialist multidisciplinary team, providing a named
contact and giving support to primary care services may need resources. Current
provision of specialist teams is very uneven across the country and increased
staffing may be needed in some areas if there are more referrals. The specialist
team will need to cover different areas of expertise, but most people will only need
access to some elements and only at specific times. However, faster access to
diagnosis and appropriate care will lead to better symptom management and to
substantially better outcomes for people with ME/CFS and so might reduce health
and care costs in the longer term.
Allocating a single point of contact to the person with ME/CFS is not routine practice
across the NHS. This could be implemented differently in different regions according
to local service structures and may not necessarily need the addition of new staff. It
could improve the efficiency of care for people with ME/CFS by reducing the burden
of repeated appointments.
Return to recommendations
Managing ME/CFS
Recommendation 1.11.1
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Why the committee made the recommendations
Overall, the evidence for non-pharmacological and pharmacological interventions for
ME/CFS was heterogenous and inconclusive, with limited evidence for any one
intervention, and this supported
the committee’s experience.
The committee was
aware of claims that have been made about cures for ME/CFS and that there is often
a financial cost to people with ME/CFS when they pursue these. To address this, the
committee agreed to raise awareness in the recommendations of the current lack of
treatment or cure for ME/CFS.
Core outcomes in ME/CFS
There is considerable controversy over the outcome measures used in trials of
treatments for ME/CFS and managing symptoms. Inconsistency in outcomes used
and concerns over the validity of some outcome measures in an ME/CFS population
make it difficult to combine and compare results from different trials, limiting the
ability to draw conclusions on the clinical and cost effectiveness of interventions. The
committee made a
recommendation for research on core outcome sets
to enable the
direct comparison of treatments for ME/CFS and symptom management and shape
and optimise ME/CFS trial design.
How the recommendations might affect practice
The recommendations reflect current practice so no impact on resources is
anticipated.
Return to recommendation
Energy management
Recommendations 1.11.2 to 1.11.10
Why the committee made the recommendations
The committee discussed how the controversy over graded exercise therapy had
resulted in confusion over what support should be available to safely manage
physical activity in people with ME/CFS. They agreed it was important to provide
clarity and clear guidance around activity.
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Based on their experience, the committee agreed that energy management is one of
the most important tools that people with ME/CFS have to support them in living with
the symptoms of ME/CFS. Energy management is not a physical activity or exercise
programme, although the principles of energy management do apply to physical
activity programmes.
The committee listed the components of energy management and what an
assessment and plan would include, noting that the key component is understanding
the principle of the ‘Energy
envelope’. They recommended a detailed assessment
that takes into account all areas of current activity and evaluation of rest and sleep,
to establish an individual activity pattern within the person’s current energy envelope.
To avoid potential harms through energy management being wrongly applied to
people with ME/CFS without adequate support and expertise, the committee
recommended that in specific circumstances people with ME/CFS should be referred
to a specialist ME/CFS physiotherapy or occupational therapy service.
The committee agreed that if energy management strategies are inappropriately
applied in people with severe or very severe ME/CFS this will increase the potential
for harm. To reflect this, they recommended specialist advice and additional care in
this group.
Self-monitoring techniques
Although there was a lack of effectiveness evidence on tools to support people to
monitor activity management, the committee considered the qualitative evidence and
their experience about benefits in using tools to monitor activity alongside the
potential harms of increasing the burden on the person and causing them additional
anxiety about their activity levels. The committee decided to recommend that activity
recording should be as easy as possible, and people should take advantage of tools
they are already using. The committee also decided to make a
recommendation for
research on self-monitoring management strategies
to help determine which
techniques are effective.
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How the recommendations might affect practice
The energy management plan forms part of the overall personalised management
plan and is a usual part of specialist care. Appropriate energy management supports
people to stay within their energy envelope and aims to prevent their symptoms from
worsening and to support them to increase their activity if possible. If people
maintain or improve their health this will be highly cost effective.
Return to recommendations
Physical maintenance
Recommendations 1.11.11 to 1.11.14
Why the committee made the recommendations
The committee discussed that people with ME/CFS can have reduced or limited
mobility and, in their experience, this can lead to health problems. Physical
maintenance should therefore be assessed and included in the
person’s
management plan.
The committee agreed that people with ME/CFS who are immobile need information
to help them recognise and prevent the possible complications of long-term
immobility such as bone health and skin problems. In the committee’s experience,
families and carers are given limited information about these areas of care (for
example, how to transfer someone from a bed to a chair) and it would have helped
them.
How the recommendations might affect practice
These recommendations are already established in other NICE guidance and should
not impose a significant cost on the NHS. If they lead to fewer people with
deteriorating symptoms they will be highly cost effective.
Return to recommendations
Physical activity
Recommendations 1.11.15 to 1.11.22
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Why the committee made the recommendations
Because of the harms reported in the qualitative evidence, as well as the
committee’s experience of the effects
when people exceed the limits of their energy
envelope, the committee recommended that people with ME/CFS should not
undertake a physical activity or exercise programme unless it is delivered or
overseen by a physiotherapist or occupational therapist who has training and
expertise in ME/CFS. The committee reinforced there is no therapy based on
physical activity or exercise that is effective as a treatment or cure for ME/CFS.
In developing more specific recommendations on the content, approach and delivery
of physical activity management, the committee considered the benefits and harms
associated with graded exercise therapy that had been identified in the qualitative
evidence and their own experiences of these types of interventions. They
recommended not to offer any programme based on fixed incremental physical
activity or exercise, for example graded exercise therapy or structured activity or
exercise programmes that are based on deconditioning as the cause of ME/CFS.
In the committee’s
experience,
people with ME/CFS have had varying results from
physical activity programmes and they thought it was important to discuss this with
people with ME/CFS and talk to them about the possible risks and benefits. The
committee outlined what a personalised physical activity plan should look like based
on their experience.
How the recommendations might affect practice
These recommendations should prevent inappropriate or unstructured physical
activity or exercise programmes
from worsening people’s symptoms.
The referral to
a specialist physiotherapist or occupational therapy service may need increased
resources; however, this should not impose a significant cost on the NHS and if it
leads to fewer people with deteriorating symptoms, it will be highly cost effective.
Return to recommendations
Rest and sleep
Recommendation 1.11.23
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The committee considered that giving advice on planning rest and activity was a
fundamental part of any management strategy. In their experience, understanding
the role of rest and how to introduce rest periods was important in successful energy
management.
There was a lack of evidence for sleep management, but the committee recognised
that difficulty with sleep was an area of concern for many people with ME/CFS. The
committee discussed making consensus recommendations for providing advice for
people with ME/CFS, but they agreed it was hard to be confident in recommending
any advice when there was not any evidence and a lack of consensus in the area so
they made a
recommendation for research on sleep management strategies.
How the recommendations might affect practice
This recommendation should not impose a significant cost on the NHS and if it leads
to fewer people with deteriorating symptoms it will be highly cost effective.
Return to recommendation
Managing orthostatic intolerance
Recommendations 1.11.24 to 1.11.26
Why the committee made the recommendations
Orthostatic intolerance is identified as one of the symptoms commonly associated
with but not exclusive to ME/CFS (see the
section on suspecting ME/CFS).
In the
committee’s experience,
although not everyone with ME/CFS experiences
orthostatic intolerance, it is very common and the symptoms can be hard to
differentiate from other ME/CFS symptoms.
Based on consensus, the committee made recommendations to raise awareness
that people with ME/CFS may experience orthostatic intolerance, and to clarify when
people with orthostatic intolerance should be referred to secondary care.
The committee did not make any recommendations on managing orthostatic
intolerance because this can involve advice on diet, daily activities and activity
support and needs to be tailored to each person, taking into account their other
ME/CFS symptoms.
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The committee recommended that medicines should only be prescribed or overseen
by a clinician with expertise in orthostatic intolerance because the medicines that are
usually prescribed can worsen other symptoms in people with ME/CFS.
How the recommendations might affect practice
The recommendations should not impose a significant cost on the NHS and if they
lead to fewer people with deteriorating symptoms they will be highly cost effective.
Return to recommendations
Managing pain
Recommendation 1.11.27
Why the committee made the recommendation
The committee agreed that pain is a common symptom in people with ME/CFS and
is particularly intense in people with severe and very severe ME/CFS. The lack of
evidence meant they could not recommend any interventions, but they did refer to
the NICE guidelines on neuropathic pain and headaches.
Return to recommendation
Managing nausea
Recommendation 1.11.28
Why the committee made the recommendation
In the committee’s experience,
many people with ME/CFS have nausea and this can
impact on maintaining a healthy diet. In the absence of evidence, the committee
made a consensus recommendation with advice to manage nausea based on their
own experience.
How the recommendation might affect practice
This recommendation should not impose a significant cost on the NHS and if it leads
to fewer people with deteriorating symptoms it will be highly cost effective.
Return to recommendation
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Medicines, including medicines for symptom management
Why the committee made the recommendations
Recommendations 1.11.29 to 1.11.32
The evidence for any pharmacological interventions for ME/CFS was inconclusive
with limited evidence for any one medicine and this supported the
committee’s
experience. The committee was aware of claims that have been made about cures
for ME/CFS and there is often a financial cost to people with ME/CFS when these
are pursued. The committee considered it was important to highlight that medicines
or supplements should not be offered as a cure for ME/CFS.
The committee recognised that medicines can be useful for people with ME/CFS to
manage their symptoms. The committee agreed that people with ME/CFS may be
more intolerant of drug treatment and have more severe adverse effects than people
who do not have ME/CFS, so they decided to raise awareness of this. To reduce the
risk of harm, the committee discussed using a cautious approach to medicines
prescribing, which includes starting the medicine at a lower dose than in usual
clinical practice and monitoring how the person responds before adjusting the dose.
The committee discussed medicines management for children and young people,
noting the potential for harm, which led them to recommend that prescribing should
be initiated under the supervision of a paediatrician with expertise in ME/CFS.
How the recommendations might affect practice
The recommendations should not impose a significant cost on the NHS and if they
lead to fewer people with deteriorating symptoms they will be highly cost effective.
Return to recommendations
Dietary management and strategies
Recommendations 1.11.33 to 1.11.42
Why the committee made the recommendations
There was not enough evidence to make a recommendation for any dietary strategy
for ME/CFS. However, the committee agreed some general recommendations to
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ensure that people with ME/CFS receive appropriate support related to diet. This
included guidance on when to refer someone to a dietitian who specialises in
ME/CFS. The committee also referred to other NICE guidance that was relevant.
The committee considered that people with severe or very severe ME/CFS are
particularly at risk of problems associated with eating and are likely to need
additional support and referral to a dietitian who specialises in ME/CFS. The
committee also used their own experience to recommend some general dietary
advice that could be helpful for people with severe or very severe ME/CFS.
There was a lack of evidence for dietary strategies, but the committee recognised
that difficulties with diet and nutrition was an area of concern for many people with
ME/CFS. The committee discussed making consensus recommendations for
providing dietary strategies for people with ME/CFS but they agreed it was hard to
be confident in making recommendations when there was not any evidence and a
lack of consensus in the area, so they made a
recommendation for research on
dietary strategies.
How the recommendations might affect practice
The recommendations should not impose a significant cost on the NHS and if they
lead to fewer people with deteriorating symptoms they will be highly cost effective.
Return to recommendations
Psychological support: cognitive behavioural therapy
Recommendations 1.11.43 to 1.11.50
Why the committee made the recommendations
The quantitative and qualitative evidence was mixed, and this reflected the
committee’s experience.
Based on criticisms in the qualitative evidence of CBT being
used as a ‘treatment’ for ME/CFS,
the committee considered it was important to
highlight that CBT is not a cure for ME/CFS and should not be offered as such, but
that it is a type of supportive psychological therapy which aims to improve wellbeing
and quality of life and may be useful in supporting people who live with ME/CFS to
manage their symptoms. It should therefore only be offered in this context.
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The qualitative evidence showed that people with ME/CFS have found CBT useful
when delivered by a therapist who understands ME/CFS, but also that there is the
potential for harm when it is inappropriately delivered. To avoid this, the committee
made the recommendation about who should deliver CBT and the clinical
supervision they should have.
The committee also made recommendations based on their experience to explain
the principles of CBT for people with ME/CFS and what people should expect if they
decide to consider CBT.
There was limited evidence in children and young people for the committee to make
specific recommendations. After reflecting on their own experience, they decided to
recommend that CBT is only considered for children and young people with ME/CFS
who have been fully informed (along with their parents and carers) about the
principles and aims of CBT and that their cognitive and emotional maturity is taken
into account.
None of the clinical evidence included or reflected the needs of people with severe
ME/CFS, and the qualitative evidence was mixed, with some people reporting benefit
and others harm. The committee recognised that CBT could be supportive for people
with severe ME/CFS but because of the severity of their symptoms it is important to
be more flexible and adapt the delivery of CBT to accommodate
people’s
limitations.
How the recommendations might affect practice
CBT is currently provided for people with ME/CFS in specialist services. These
recommendations clarify when CBT should be offered to people with ME/CFS. They
should not have an impact on NHS resource and costs.
Return to recommendations
Managing coexisting conditions
Why the committee made the recommendations
Recommendations 1.12.1 to 1.12.4
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The evidence on the diagnostic criteria identified that some conditions are common
in people with ME/CFS and
this reflected the committee’s experience. The
committee made a recommendation to highlight this and referred to relevant NICE
guidance.
How the recommendations might affect practice
The recommendations should not impose a significant cost on the NHS.
Return to recommendations
Managing flares and relapse
Recommendations 1.13.1 to 1.13.7
Why the committee made the recommendations
In the
committee’s
experience, flares and relapse are a common part of ME/CFS.
The committee considered it important to give people information about what a flare
is, how to recognise one and how they can lead to a relapse if activity is not
monitored and adjusted.
The committee discussed the importance of recognising when a flare has moved to a
relapse and that it needs to prompt a review of the
person’s
management plan. It is
also possible that a relapse may lead to someone moving to a more severe form of
ME/CFS. Part of the review of the management plan is to consider what the causes
of relapse might have been and to consider this when revising the plan.
How the recommendations might affect practice
The recommendations should not impose a significant cost on the NHS and if they
lead to fewer people with deteriorating symptoms they will be highly cost effective.
Return to recommendations
Review
Recommendations 1.14.1 to 1.14.8
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Why the committee made the recommendations
The evidence showed that people with ME/CFS did not always receive follow up or
review of their care, but those who did valued this.
This reflected the committee’s
experience, so they recommended at least annual reviews for adults. The committee
outlined areas for discussion during the review, including asking people how much
support they had to carry out their activities of daily living. This was because, in the
committee’s
experience, this is an area often overlooked and the input of family and
carers is often not acknowledged. The committee noted that if any problems are
identified advice should be sought from an appropriate specialist.
The committee agreed that children and young people need more frequent review to
take into account changes in their ME/CFS as they develop. They also wanted to
highlight the importance of involving a paediatrician.
How the recommendations might affect practice
There is variation in practice and some people with ME/CFS, including those with
severe and very severe ME/CFS, do not get a clinical review routinely, so for some
this will be a change in practice. These recommendations are in line with other long-
term conditions and support equity of access to care for people with ME/CFS.
Routine follow-up might not be present everywhere but most people with ME/CFS
already have regular contact with their primary care teams, so there is not expected
to be a large resource impact.
Return to recommendations
Training for health and social care professionals
Recommendations 1.15.1 to 1.15.3
Why the committee made the recommendations
A strong theme in the evidence was the lack of knowledge, understanding and up-to-
date training that health and social care professionals have about ME/CFS. This was
reflected in
the committee’s experience
so they recommended that all health and
social staff who deliver care to people with ME/CFS should be trained so they are
able to provide the care in this guideline. The evidence showed that training
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programmes in ME/CFS are often out of date, so the committee made a
recommendation highlighting what a training programme should look like.
How the recommendations might affect practice
Training and education in ME/CFS are not widespread and this will be a change in
practice, so there will be a resource impact from the cost of providing this training.
Improving knowledge and awareness about ME/CFS will support identifying ME/CFS
earlier, which
should improve people’s care and
lead to better outcomes.
Return to recommendations
Context
The terms ME, CFS, CFS/ME and ME/CFS have all been used for this condition and
are not clearly defined. There is little pathological evidence of brain inflammation,
which makes the term 'myalgic encephalomyelitis' problematic. Many people with
ME/CFS consider the name 'chronic fatigue syndrome' too broad, simplistic and
judgemental. For consistency, the abbreviation ME/CFS is used in this guideline.
Recent data from the UK Biobank suggests that there are over 250,000 people in
England and Wales with ME/CFS, with about 2.4 times as many women affected as
men. It is a complex, multi-system, chronic medical condition that has considerable
personal, social and economic consequences and
a significant impact on a person’s
emotional wellbeing and quality of life.
Everyday life for people with ME/CFS, their family and carers is disrupted and
unpredictable. Many people with the condition are unemployed, and less than a fifth
work full-time. Approximately 25% have severe disease and are housebound or bed-
bound. The quality of life of people with ME/CFS is lower than that of many people
with other severe chronic conditions, including multiple sclerosis and some forms of
cancer.
It is not clear what causes ME/CFS. In many cases, symptoms are thought to have
been triggered by an infection, but it is not simple post-illness fatigue. It lasts longer
and even minimal mental or physical activity can make symptoms worse.
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There is no diagnostic test or universally accepted definition for ME/CFS. People
with the condition report delays in diagnosis, and many healthcare professionals lack
the confidence and knowledge to recognise, diagnose and manage it. Fatigue
associated with another chronic disease may be confused with ME/CFS and some
practitioners are reluctant to positively diagnose ME/CFS when no other causes are
found.
People with ME/CFS report a lack of belief and acknowledgement from health and
social care professionals about their condition and related problems, which may lead
them to be dissatisfied with care and to disengage from services. There are added
issues for children and young people if illness makes school attendance difficult,
bringing families to the attention of educational and social care services.
NICE produced a guideline on CFS/ME in 2007. That guideline made
recommendations on cognitive behavioural therapy and graded exercise therapy.
Both treatments are controversial for this condition, and there are disagreements and
uncertainty about their effectiveness among both people with ME/CFS and health
providers. The evidence for the effects of other commonly prescribed therapies has
also been questioned and there is a need to review the evidence for these
interventions.
Further evidence is likely to emerge from major studies that have started recently.
When they are completed NICE will review the evidence to see whether another
guideline update is needed in future.
There is unequal access to specialist services across England and Wales with some
areas reporting very limited access. It is important this inequity of access is
addressed.
Finding more information and resources
To find out what NICE has said on topics related to this guideline, see the
NICE
webpage on ME/CFS.
For details of the guideline committee see the
committee member list.
© NICE 2020. All rights reserved. Subject to
Notice of rights.
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