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Worcestershire Health and Care NHS Trust
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Friends & Family area

What does having CFS/ME mean for my friend or family member?

Being given a diagnosis of CFS/ME can mean very different things to each individual. Some people may find it to be a relief, for at last they have an answer for their symptoms. People often spend a long time trying to find answers, and some predict the worst possible outcome and so to have a diagnosis means that their experiences are validated, which provides a great comfort. However, others may find the diagnosis to be frightening, with fears about the why they are ill, what can be done and what this might mean for the future.
Similarly, experiencing the many symptoms associated with CFS/ME can be a very difficult for your family or friend. Some feelings that are commonly associated with CFS/ME are despair, frustration, sadness, isolation, hopelessness and guilt.
Often sufferers fluctuate between these feelings and may be linked to how intense the symptoms are. It is common for people to feel that they have no control over their condition; this can be a very frightening and frustrating time.

Treatments for CFS/ME

Although there is no cure for CFS/ME, research has shown that the best way to treat the condition in order to improve symptoms, gain a better quality of life and improve functional independence is by adopting an approach which encompasses biological, psychological and social factors. This means that we use a number of different strategies to help patients, depending on their need. A primary aim of our service is to give our patients the right tools and skills to be able to manage the condition.
Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

How does their condition affect me?

Being given a diagnosis of CFS/ME can mean very different things to each individual. Some people may find it to be a relief, for at last they have an answer for their symptoms. People often spend a long time trying to find answers, and some predict the worst possible outcome and so to have a diagnosis means that their experiences are validated, which provides a great comfort. However, others may find the diagnosis to be frightening, with fears about the why they are ill, what can be done and what this might mean for the future.

Similarly, experiencing the many symptoms associated with CFS/ME can be a very difficult for your family or friend. Some feelings that are commonly associated with CFS/ME are despair, frustration, sadness, isolation, hopelessness and guilt. Often sufferers fluctuate between these feelings and may be linked to how intense the symptoms are. It is common for people to feel that they have no control over their condition; this can be a very frightening and frustrating time.

How can I help them to manage their condition?

There are many ways in which you can help your friend or family manage their condition. Often people underestimate just how much their support and care is appreciated by their loved one. 
  • It is vital that you also look after yourself; if you become run down, stressed and exhausted you can be of little support to them. Furthermore, if they see you burning out it may add to the guilt and stress surrounding their condition.
  • Listening to your friend or family member and trying to recognise just how things are affecting them will give you a greater understanding of the role that you play, and how you can help them.
  • Becoming familiar with the information and advice given regarding their condition and reminding them of this at times of need is of great benefit.  Throughout their journey to recovery they will be setting many goals, these are not always easy to achieve and so some reminding and encouragement can be very useful to keep them on track. Further to this, praise when they have achieved a goal will promote a positive attitude towards future goals.
  • Together you could negotiate around topics such as household tasks, social activities, the home environment and responsibilities. Doing things collaboratively will help you both to support each other through the condition.
  • As people are unable to fulfil the roles and responsibilities they once did, CFS/ME often triggers feelings of guilt. We often hear people saying “I should be able to get dinner ready for my partner”, or “my husband/wife gets home from work and I’ve not managed to do any of the housework”. This is very common, but made easier by focussing on the positives of what they have achieved that day, rather than what they haven’t. Perhaps they had managed to make time for a relaxation exercise; which in CFS/ME is very important. Try to remain calm and understand why they are struggling with certain tasks, goals, activities etc. Talk to each other about how you may be able to help them to reach this.
  • When planning ahead, taking part in activities or even sharing information with them, try not to overwhelm them. Urge them to write things down if they struggle to remember information, or to pace their activities etc.
  • If in doubt, ask them – they know themselves better than anyone else can and by being curious and open with each other you are much more likely to be able to support them in the best way.

Further information for friends and family members