Basic advice from the MEA on activity and energy management and pacing
NB: Some of this advice and info only applies to the UK
Activity and energy management, which should include physical, mental and emotional activity, has to take acount of the stage (ie how long you have been ill), severity, progress and variability of your illness.
In other words, the type of activity and energy management programme you carry out has to be done on a very individual and flexible basis.
The type of activity and energy management programme we recommend is a process called pacing - which is consistently reported by people with ME/CFS to be a very safe and helpful way of learning to cope with ME/CFS
We have MEA information leaflets covering activity and energy management, and pacing, in more detail:
Activity Management and Pacing leaflets:
http://www.meassociation.org.uk/shop/management-leaflets/
(Pacing leaflet is in the ME Connect section)
It is also well worth reading the new MEA report on acceptability, efficacy and safety of CBT, GET and Pacing:
http://www.meassociation.org.uk/how-you-can-help/fundraising-support/
The other point I would make is that getting the right balance between rest and activity is often a do-it-yourself process involving trial and error
However, it is extremely helpful to have some good initial advice on establishing an appropriate baseline of safe activity levels, along with how to gradually and flexibility increase what you are able to do - as well as cutting back when appropriate
To do so you really need some help from a health professional - doctor, OT, physiotherapist - who fully understands the way to deal with this key aspect of ME/CFS management
Have you been referred by your GP to a hospital-based ME/CFS service for more help on management?
If not, this is something you could discuss with your GP
There is a full list of ME/CFS hospital based services on the MEA website:
http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/
Along with a clear health warning about inappropriate exercise programmes…..
There are also a few private services available who can provide good expert advice on activity management
Eg - The Yorkshire Fatigue Clinic, which also takes NHS referrals:
http://www.yorkshirefatigueclinic.co.uk
And if you want something to show to a physiotherapist, or other health professional who is surpervising activity management but appears to be giving unhelpful or even harmful advice, this is an article from a professional journal for physiotherapists:
http://www.meassociation.org.uk/201...-exercise-for-people-with-me-19-january-2011/
Dr Charles Shepherd
Hon Medical Adviser, MEA