Because there is no known cure for everyone with ME/CFS, 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 and downs, and no certain path through it
Learn about PEM/PESE – learn how exertion, medication etc. affects you and makes your symptoms worse – this is called Post Exertional Malaise (PEM) or Post Exertional Symptom Exacerbation (PESE)
Develop a management plan – Understand what rest and activity means for ME/CFS and how to use that knowledge to ‘Pace’ and minimise your symptoms. This is often called an Energy management plan
Is there NHS help? Find out if there are informed GPs and specialist services in your area
Learn to be calm – Find ways to minimise stress and the emotional distress of being ill and losing your old life
Find practical and peer support – from social services, equipment loan services, charities, local support groups etc.
Associated conditions? – Be aware that it is possible to develop other conditions where symptoms overlap and which may have some recognised treatments. These can be called associated or co-morbid conditions
Develop realistic hope – while accepting life has changed, hope can come from maintaining and adapting your management plan, learning how to cope when things seem to be going badly (relapses aka crashes) and keeping up to date with research developments and what helps other people with ME/CFS.
