Så blev den længe ventede ME-guideline fra NICE publiceret 🙌
Grundlaget for at behandle ME som en funktionel lidelse er fuldstændig væk.
Se tråd 🧵
#sundpol #dksund #dksundhed #sundhed #dkmedier #patientsikkerhed @JaneHeitmann @heunicke @stephanie_lose
nice.org.uk/guidance/ng206
Grundlaget for at behandle ME som en funktionel lidelse er fuldstændig væk.
Se tråd 🧵
#sundpol #dksund #dksundhed #sundhed #dkmedier #patientsikkerhed @JaneHeitmann @heunicke @stephanie_lose
nice.org.uk/guidance/ng206
1.1.1 Be aware that ME/CFS:
•is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated
•is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated
1.1.2 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.
that people with ME/CFS may have lost trust in health and social care services and be hesitant about involving them.
1.1.4
Recognise that people with ME/CFS need:
•timely and accurate diagnosis so they get appropriate care for their symptoms
Recognise that people with ME/CFS need:
•timely and accurate diagnosis so they get appropriate care for their symptoms
Box 2 Symptoms for suspecting ME/CFS
1.4.1
Diagnose ME/CFS in a child, young person or adult who has the symptoms in recommendation 1.2.2 that have persisted for 3 months and are not explained by another condition
1.4.1
Diagnose ME/CFS in a child, young person or adult who has the symptoms in recommendation 1.2.2 that have persisted for 3 months and are not explained by another condition
Box 3 ME/CFS specialist team
Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS
Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS
1.7.1
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.
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.
1.11.1
Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.
Be aware that ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.
1.11.14
Do not offer people with ME/CFS:
•any therapy based on physical activity or exercise as a cure for ME/CFS
Do not offer people with ME/CFS:
•any therapy based on physical activity or exercise as a cure for ME/CFS
any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
Medicines for symptom management
1.12.17
Take into account when prescribing that people with ME/CFS may be more intolerant of drug treatment
1.12.17
Take into account when prescribing that people with ME/CFS may be more intolerant of drug treatment
1.12.27
Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.
Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.
1.12.28
Discuss cognitive behavioural therapy (CBT) with adults, children and young people with ME/CFS (and their parents or carers, as appropriate). Explain:
•its principles, including that it may help them manage their symptoms but it is not curative (see box 5)
Discuss cognitive behavioural therapy (CBT) with adults, children and young people with ME/CFS (and their parents or carers, as appropriate). Explain:
•its principles, including that it may help them manage their symptoms but it is not curative (see box 5)
1.12.32
Explain that CBT for people with ME/CFS:
•aims to improve their quality of life, including functioning, and reduce the distress associated with having a chronic illness
Explain that CBT for people with ME/CFS:
•aims to improve their quality of life, including functioning, and reduce the 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.
1.13.1
Be aware that other conditions may coexist with ME/CFS and should be investigated and managed according to best practice.
Be aware that other conditions may coexist with ME/CFS and should be investigated and managed according to best practice.
1.17.2
Recognise that symptoms of severe or very severe ME/CFS may mean that people:
•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)
Recognise that symptoms of severe or very severe ME/CFS may mean that people:
•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)
•are housebound or bedbound and may need support with all activities of daily living, including aids and adaptations to assist mobility and independence in activities of daily living (for example, a wheelchair)
1.17.5
Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their care and support plan.
Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their care and support plan.
1.17.7
When planning hospital care for people with severe or very severe ME/CFS:
•discuss with the person (and their family or carers, as appropriate) what to expect when they come into hospital
When planning hospital care for people with severe or very severe ME/CFS:
•discuss with the person (and their family or carers, as appropriate) what to expect when they come into hospital
•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 sound
Etc
•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 sound
Etc
@threadreaderapp unroll
Vigtigt diagnose-kriterie:
Post-exertional malaise after activity in which the worsening of symptoms:
◦is often delayed in onset by hours or days
◦is disproportionate to the activity
◦has a prolonged recovery time that may last hours, days, weeks or longer.
Post-exertional malaise after activity in which the worsening of symptoms:
◦is often delayed in onset by hours or days
◦is disproportionate to the activity
◦has a prolonged recovery time that may last hours, days, weeks or longer.
• • •
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