People with ME, families and carers
Healthcare professionals urgently need accurate education and training that reflects the reality of ME as a complex multi-system disease.
Medical education on ME in the UK is often lacking. We are working towards a world in which healthcare professionals immediately understand the severity of ME, and how to treat and manage it.
With the 2021 National Institute for Health and Care Excellence (NICE) ME/CFS guideline published, we have a real opportunity to improve medical education, and therefore the care of people with ME in the UK.
Dear Doctor, you can help people with ME
The National Institute for Health and Care Excellence (NICE) guideline on ME was published in October 2021. The guideline contains recommendations on treatment and management for people suffering from ME in England and Wales.
Now, we are asking doctors everywhere to read this guideline, so they can provide the best care possible for people with ME.
Medical Education on ME with Dr Nina Muirhead
Dr Muirhead talks about her CPD education module on ME/CFS and the need for further education of medical professional.
Midwife Hayley Valentine Howard talks about ME and pregnancy
Hayley Valentine-Howard talks about the care of pregnant women who have ME and the need for further research.
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Our 'Postcards to Doctors' campaign to educate doctors
Training Modules for Medical Professionals
You can play your part in educating your GP by sending them links to training on ME. We have prepared a sample GP letter for you to send to your surgery.
Share this training with your GP or other medical professionals by using our email template
Share this CPD online module with your doctor
This free one-hour CPD accredited course contains a wealth of information, including how to diagnose the illness, the dangers of exercise, common comorbidities, and best practice in caring for people with ME. It also touches on the coronavirus pandemic and the possibility that it will trigger ME in a subset of those who survive COVID-19.
NHS elearning programme on ME for healthcare staff
This elearning programme has been developed in collaboration with patient groups and the Department of Health and Social Care as a resource for all healthcare practitioners looking to enhance their knowledge and support for individuals living with ME/CFS.
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Energy Management
Energy management is the key management approach for people with ME. Over-use of energy can worsen symptoms, sometimes with long-term effects.
The NICE Guideline on ME/CFS recommends that healthcare professionals should work with patients with ME to develop an energy management plan that takes into account the activities they do - including physical, emotional and congnitvie activities. The resources below may help you understand how to manage your energy:
ME Action: Pacing and Management Guide
Long Covid Physio/Physios for ME: short video on pacing
Physios for ME: Resources for people with ME
Severe and Very Severe ME
Around 25% of ME patients have severe/very severe ME: they are largely housebound and often bedbound. These resources provide information:
NICE guideline: Care for people with severe or very severe ME/CFS
25% Group: Information on managing ME. The 25% group supports people with severe and very severe ME
The series Dialogues of a Neglected illness have created three short videos (all under 20 minutes) which give a powerful insight into life with severe/very severe ME and the care needs of this highly vulnerable group.
ME in Children and Young People
ME affects children as well as adults.
The 2021 NICE guideline, including its guidance on Severe ME/CFS, applies to children and young people just as it does to adults. In addition it includes some specific recommendations relating to children and young people, including:
When to suspect ME/CFS in a child or young person; the involvement of paediatricians including those with expertise in ME/CFS; and the frequency of ongoing reviews.
Advice for a child or young person who is well enough to continue with education or training, offering early support to facilitate necessary adjustments such as a reduced timetable and access to home-based learning.
Guidance on safeguarding.
See also:
Voices from the Shadows: two short videos on paediatric ME/CFS
Action for ME: Your Child and ME
Action for ME: Teachers and other professionals
Long Covid
Long Covid is an evolving picture. However, it is clear that there is substantial overlap between ME and Long Covid. Research studies suggest that between 40% and 60% of those with Long Covid also meet the diagnostic criteria for ME.
More on this can be found in the ME Association’s free booklet, ME and Long Covid: Are They the Same Condition?
Long Covid also affects children in significant numbers. Long Covid Kids provides information and support to children and families affected by Long Covid.
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The Royal Colleges of Medicine campaigns
Royal Colleges of Medicine in the UK are hugely influential members organisations that oversee the training, education, and standards of medical practice across various specialties. #MEAction UK and #MEAction Scotland have organised and run information stalls at the annual conferences for the Royal College of GPs and the Royal College of Paediatrics and Child Health and successfully campaigned for the Royal College of Physicians Edinburgh to run an ME training event. We will continue to look for opportunities to engage with the Royal Colleges' members at conferences and other events.
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Key points from the NICE ME/CFS guideline
Severity
Mild ME
People with mild ME care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.
Moderate ME
People with moderate ME 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 or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
Severe ME
People with severe ME 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 sound.
Very Severe ME
People with very severe ME 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.
Diagnosis
In the UK, ME should be diagnosed in a child, young person or adult who has the symptoms below that have persisted for 3 months and are not explained by another condition.
ME should be suspected in people who have all of these symptoms for at least 4 weeks when they aren’t explained by another condition.
When ME is suspected, people should be advised:
not to use more energy than they perceive they have − they should manage their daily activity and not ‘push through’ their symptoms
to rest and convalesce as needed (this might mean making changes to their daily routine, including work, school and other activities)
to maintain a healthy balanced diet, with adequate fluid intake.
Debilitating Fatigue
Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
Post-Exertional Malaise
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.
Unrefreshing Sleep
Unrefreshing sleep or sleep disturbance (or both), which may include:
feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.
Cognitive Difficulties
Cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
Key areas of information and advice
Access to care and support
Health and social care organisations should ensure that people with ME 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.
Information about ME
People with ME should be given tailored information about their illness. It should be explained that:
ME is a fluctuating condition
the long-term outlook varies from person to person, but many will need to adapt to living with ME/CFS
ME can be worsened by particular triggers
ME can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.
People with ME should be signposted to support groups, given advice on financial and social support, and access to aids and adaptations.
Principles of care
Health professionals should 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.
They should involve families and carers (as appropriate) in discussions and care planning if the person with ME chooses to include them. They should also be aware that ME affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity. It’s important to understand this is a fluctuating illness.
Energy management
Energy Management is the key management approach for all people with ME. It’s a long term approach, that aims to help people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.
People with ME should be supported to develop and energy management plan, that takes into account all the activies they do – including both physical and cognitive activites.
The new guideline clearly states that health professionals should “work with the person to establish an individual activity pattern within their current energy limits that minimises their symptoms.”
A specialist physiotherapist or occupational therapist may be helpful for some people
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Our Aims
To ensure that healthcare professionals have access to the most recent information and training on the diagnosis, management and care of people with ME in the UK.
To make professionals aware of the dangers of incrementally increasing activity levels for people with ME, and that pacing is the best management strategy.
To build widespread understanding and acknowledgement of the debilitating nature of ME.