CFS/ME Patient Resources
CFS self help book C/O Manchester NHS CFS service
Overcoming Fatigue booklet Bristol CFS Service
Action for ME website
Dept of Health employment literature for Employees;
Dept of Health employment literature for employers;
The cause of CFS (chronic fatigue syndrome) remains unknown. Although many abnormalities are found in various body systems in people with CFS none have been found to be the cause of the condition. Whist frustrating, because there is no universally agreed diagnostic test, this fact is a current reality. Tests are currently therefore used to exclude other conditions rather than specifically diagnose CFS.
The natural history of the illness is variable but the central problem appears to centre around a persons ability to maintain energy balance. I often describe this as being similar to a house with the central heating on and all the windows open. The house never gets warm. The open windows in the metaphorical house represent the many different factors that contribute to energy loss in CFS. They include infections, pain, sleep disturbance, stress and anxiety, other medical and hormone issues and nutritional deficiencies. Many symptoms occur in CFS but again they do not point to the underlying cause but simply represent manifestations. Over time automatic behavioural responses including sleeping excessively because of feeling tired and partaking in prolonged bursts of activity due to necessity or when a small amount of remission of symptoms occur, tend to fuel the condition and negate recovery.
The treatments that are widely used in conventional healthcare to treat CFS are aimed at limiting the physiological (internal body) deconditioning that occurs as the condition progresses and limiting unhelpful behavioural adaptations and coping strategies that can prevent recovery and fuel worsening symptoms.
Current treatments do not treat the underlying cause of the illness.
It is clear that the current treatments, that are widely used to treat CFS, do not provide an effective solution for all people suffering from the condition. More effective treatment strategies, in particular for those people severely affected by CFS and who are house bound, are much needed.
I have attached some useful resources at the top of this page for information about management strategies along with some employment guidance from the department of health and useful information produced by Action for ME.
Please note that the resources suggested in the links are focussed towards management of people with mild to moderate CFS/ME. Self management strategies may not be helpful for people who are severely affected by and disabled with CFS/ME. People who are severely affected by CFS/ME are likely to need a much greater degree of intervention and support, including domiciliary care, to facilitate recovery.