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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, so to have a diagnosis means that their experiences are validated, and this can provide a great comfort. However, others may find the diagnosis to be frightening, with fears about 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 very difficult for your family member 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, which 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 is by adopting an approach which encompasses biological, psychological and social factors. This helps improve symptoms, gain a better quality of life and improve functional independence. 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.
Although NICE guidelines are currently being reviewed, they currewntly 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.
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How does the condition affect me?

You probably already know that your friend or family member having CFS/ME affects you too. Whilst you do not share the physical symptoms, you may feel worry and upset for your friend or relative, and their condition may impact on the shared areas of your lives. For example;

  • They may not be able to do the things that you used to enjoy doing together.
  • They may not be able to plan things in advance, or have to cancel plans at the last minute.
  • Their ability to engage and enjoy social activities may be reduced.
  • Their role within a household may have changed; earning money, looking after children, household chores etc and you may be required to help them more.
  • There may be added financial pressures on the household if they are unable to work.
  • There may be changes to any intimate physical relationship.
  • There may be an increase or fluctuations in their emotions.

 

There are many ways in which your family or friends’ condition can affect you, depending on your relationship with them before they became unwell. It is important to remember that they probably want to be able to do everything that they could do before they became unwell too, and the added frustration of feeling like they are also letting someone else down can be very upsetting for them.

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, recognising achievements 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.


Carers’ Assessment

“A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.”

Many friends and family members do not think of themselves as ‘carers’, however if any of your time and energy is spent supporting someone with CFS/ ME, then you are considered to be a carer and are therefore entitled to support for yourself.

A carers assessment is for adult carers of people who are disabled, ill or elderly. You are entitled to an assessment regardless of the amount or type of care you provide, your financial situation or your level of need for support.

Having a Carers’ Assessment is your opportunity to talk with a Social/Health Care Worker about your needs and feelings as a carer. The purpose of the assessment is to consider;

  • How caring impacts on your life and allows you to talk about your needs
  • The support needed to help you to continue to provide care or to decide who should provide this if you are unable to continue
  • Your own health and family commitments as well as your work, education and training needs, and the impact that your caring role might have on these

 

The Carers’ Assessment is not a test and there are no wrong answers. The benefit of having an assessment is that it will identify care and support needs and provide information and advice about services aimed at meeting those needs.

To find out more, visit: http://www.worcestershire.gov.uk/advicecarehealthandsupport

To request a carers assessment, you can contact Worcestershire Association of Carers on 0300 012 4272 or Adult Social Care on 01905 768053

Further information for friends and family members

Local Support Groups

Opportunities to volunteer:

As people feel able to, sometimes they ask about opportunities to support other people with CFS/ME. The ME Association runs a Connect helpline and they are always looking for volunteers to staff this. For more information, see https://www.meassociation.org.uk/contact-meconnect/

If you would like to explore possibilities to volunteer within the Worcestershire CFS/ME service, please email the team on WHSNHS.chronicfatigue@nhs.net

Recommended Books

Fighting Fatigue by Sue Pemberton and Catherine Berry

Mindfulness for Health by Vidyamala Burch and Danny Penman

Can I tell you about ME/ Chronic Fatigue Syndrome? A guide for friends, family and professionals by Jacqueline Rayner