Self-management
Self-management or self-care is the way a person with ME/CFS can achieve the best quality of life within the limits of their illness.
Once you have received your diagnosis you will need to begin developing a plan.
To begin with that might involve resting and adjusting to the shock of the diagnosis, but then there are a number of steps you can take to manage your condition, when you are ready.
“Take time to adjust
This is a long-term condition with ups & downs,
and no certain path through it”
Self Management Information
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Take time to adjust
This is a long-term condition with ups & downs, and no certain path through it
Learn calmness and patience
Find ways to minimise stress, including the emotional distress of being ill and losing your old life. Life might not have become what you would have chosen, but it is possible to find a new direction and develop ‘realistic hope’. This will take time.
Find practical and peer support
Everything will feel more manageable when you find others who can help. Charities can provide information and people in local support groups will understand what you and your family are going through. Find out more
On a more practical level you have the right to a wider range of support e.g. You can request a Community needs assessment from Social Services to identify what support you need. They can signpost to other places for help, financially and physically, and help with the loan of equipment. Find out more
Find out more about your equality, disability, care rights etc. in Wales: Know your Rights, Use your Rights, Live your Rights!
Be aware that it is possible to develop other conditions where symptoms overlap and which may have some recognised treatments. These can also be called associated or co-morbid conditions. Find out more
Every part of your body needs energy to work properly. ME/CFS bodies have to work hard to produce even minimal amounts of energy. Our bodies are often described as faulty batteries.
NICE recommends developing an energy management plan to help manage activities of all kinds (physical, social, mental, emotional, sensory) to stay within your energy limit. You can do this by yourself or possibly with help from the NHS in your area.
The aim is to establish an individual activity pattern that minimises symptoms and Post-Exertional Malaise (PEM). Read more
People with ME/CFS often refer to this strategy as Pacing. Pacing for ME/CFS is an activity management strategy to help you stay within your energy limits, balance activity and rest, and remain as active as possible, without making symptoms worse
Energy management and pacing can make a real difference to the way you feel and can give you some control over your life.
Not everything can be controlled however and there will be times when even a mini-crisis or mild infection can drain your energy, increase your symptoms and make you feel worse, maybe for some weeks or months.
This is called a relapse orcrash. A temporary flare-up is a short-term reaction to an event.
It can be helpful to have a back-up plan so you can meet your basic needs, inform those who need to know, and give your body a chance to recover before resuming activities.
This is particularly important if you also care for another person, like a child or sick family member. The plan could be as simple as completing an ICE form (In Case of Emergency) or a more detailed plan to ensure you can eat and rest.
Me and my health NHS Wales template helps you record basic info about yourself & your condition
Carers’ emergency card and plan Carers Wales can provide an emergency card, key fob and template plan
ME/CFS crash survival guide download the guide by the Bateman Horne Center
Find out more:
Pacing a video from Long COVID physio
Pacing for ME & CFS by Dr Ellen Goudsmit – a 10 point guide to pacing, switching and resting
Cymryd pwyll. canllaw i gleifion – canllaw 10 pwynt ar gyflymu, newid ac orffwys, gan Dr Ellen Goudsmit
PACING: Activity and energy management for people with ME/CFS and Long Covid a guide from the ME Association
Pacing an article explaining the history and definitions of pacing on MEpedia
Pacing a video from Dialogues where doctors, researchers and patients discuss their experiences
Treating CFS and FM: a free online self-study course from the Bateman Horne Center
The ME/CFS and Fibromyalgia Self-Help Program – a suite of free online self-help courses, articles, forms, worksheets and online books.