GENERAL INFORMATION

ME/CFS is a complex, chronic medical condition affecting multiple body systems

People with ME/CFS need
regular monitoring and review

They are unlikely to be seen at their worst because debilitating symptoms prevent them from leaving their home

Awareness and Impact

Be aware that ME/CFS

  • is a complex, chronic medical condition affecting multiple body systems. The pathophysiology is still being investigated.
  • affects everyone differently – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity.
  • is a fluctuating condition in which a person's symptoms can change unpredictably in nature and severity over a day, week or longer.
  • can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work, and education.

Recognise that people with ME/CFS may have:

  • experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.

Health professionals must take into account:

  • the impact this may have on a child, young person, or adult with ME/CFS.
  • that people with ME/CFS may have lost trust in health and social care services and be hesitant about involving them.

Approach to delivering care

Health and social care professionals should:

  • take time to build supportive, trusting, and empathetic relationships,
  • acknowledge to the person the reality of living with ME/CFS and how symptoms could affect them,
  • use a person-centred approach to care and assessment,
  • involve families and carers (as appropriate) in discussions and care planning if the person with ME/CFS chooses to include them,
  • be sensitive to the person's socioeconomic, cultural, and ethnic background, beliefs and values, and their gender identity and sexual orientation, and think about how these might influence their experience, understanding and choice of management.

People with ME/CFS need:

  • a timely and accurate diagnosis so they get appropriate care for their symptoms.
  • regular monitoring and review, particularly when their symptoms are worsening, changing or are severe.

Explain to people with ME/CFS and their family or carers (as appropriate):

  • that they can decline or withdraw from any part of their care and support plan and this will not affect access to any other aspects of their care. They can begin or return to this part of their plan if they wish to.

Access to care and support

Health and social care organisations should ensure that people with ME/CFS can use their services by:

  • 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, sound, touch, pain, temperature extremes or smells
  • providing care flexibly to the person's needs, such as by online or phone consultations or making home visits.
  • If a person with ME/CFS misses an appointment:
  • do not discharge them for not attending because it could be due to their symptoms worsening
  • discuss why they could not attend and how the multidisciplinary team can support them.

Be aware that people with ME/CFS are unlikely to be seen at their worst because:

  • debilitating symptoms or the risk that their symptoms will worsen may 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.

Information about ME/CFS

  • Give people with ME/CFS and their family or carers (as appropriate) up-to-date information about ME/CFS as soon as it 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:

  • is a fluctuating medical condition that affects everyone differently, in which symptoms and their severity can change over a day, week or longer,
  • varies in long-term outlook from person to person – although a proportion of people recover or have a long period of remission, many will need to adapt to living with ME/CFS,
  • varies widely in its impact on people's lives, and can affect their daily activities, family and social life, and work or education (these impacts may be severe),
  • can be worsened by particular triggers – these can be known or new triggers or in some cases there is no clear trigger,
  • can be self-managed with support and advice (see the section on energy management),
  • can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.

Further information on ME/CFS Symptoms

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