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Chronic Fatigue Syndrome (CFS)

  • We are a specialist part-time service that delivers support and treatment to people with CFS/ME (Myalgic Encephalomyelitis) within community settings across Worcestershire.

  • Address: Malvern Community Hospital 185 Worcester Road, Malvern, WR14 1EX
  • Reception phone number: 01684 612671
  • Service hours: We are a part-time service with admin hours as follows: Tuesday and Wednesday: 8am - 3pm. An answerphone is available when we are out of the office - please feel free to leave us a message and we will get back to you as soon as we are able. If you require immediate assistance or help, please contact your own GP practice. GP & Dental Out of Hours: 0300 123 3211.

About the service

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.

CFS is also known as ME, which stands for myalgic encephalomyelitis. Many people refer to the condition as CFS/ME.

For more information on CFS/ME click here

 

More about the team

We are a specialist part-time service that delivers support and treatment to people with CFS/ME within community settings across Worcestershire.  

CFS/ME affects the whole person, from the physical symptoms, emotional wellbeing, the ability to function in employment, education, and with friends and family. For this reason, we work as a multi-disiplinary team with Occupational Therapists and Psychologists. 

As a service we aim to maximise functional independence by promoting self-management, with the overall aim to enhance the individual's quality of life.  
 

Our treatment programme

Once a referral has been accepted, all patients are invited to attend an two-part initial information session in Worcester. This is a chance for us to introduce our service, let our patients know what we can offer and to provide some basic information about the condition and small changes that you can make to start improving symptoms. A family member or friend is also welcome to attend.

Following the information session, an individual assessment with an Occupational Therapist is provided to further our understanding of the patient's difficulties and needs, and the ways in which our service can help.  

The main aspect of our treatment is our Managing Lifestyles Group programme. This offers patients the opportunity to learn more about the ways in which they can manage their condition, with the aim of improving functional independence and quality of life. The group teaches skills in sleep management, pacing, relaxation and mindfulness, and communication, as well as many further topics. We find that the majority of our patients benefit greatly from this programme and particularly find that meeting and building relationships with other group members helps to reduce the isolation that is so commonly felt as a result of the condition.

Further involvement from psychology can be provided if deemed necessary and appropriate by the service.  

How to refer

It can be difficult to diagnose Chronic Fatigue Syndrome/ME as there are currently no positive markers, however a timely diagnosis can make a significant difference to a patient’s prognosis and experience of living with this condition. Based on feedback from people in our service, we have developed a leaflet for GP’s to give patients while they are being investigated for symptoms of fatigue. This details some basic management strategies that may be of use, regardless of diagnosis.

Chronic Fatigue Syndrome GP Leaflet [pdf] 650KB

Our referral criteria

For a referral to be accepted by the service the patient must; 

  • Have a confirmed diagnosis of Chronic Fatigue Syndrome (CFS) by our specialist Consultant Physicians in Infectious Diseases (Dr Ling/ DR Roberts)
  • Require specialist intervention for their CFS/ME symptoms.
  • Have a GP practice located within Worcestershire.
  • Be over 18 years of age. 

Please see the referral protocol for details of symptomology and tests that should be done prior to patients being seen by the Consultants. 

Re-referrals made by a GP will be accepted providing diagnosis by our specialist consultants was made within the last 10 years. If this is exceeded, a review of the diagnosis is required.

 

Following discharge

The Recovery And Management group is run on a bimonthly basis, and is open to anybody who has previously received treatment from our service and has now been discharged. It aims to provide individuals with a feeling of security, and an avenue to access support for their CFS, without having to be re-referred to the service.

Each session is open, though we do request that you call the service to confirm your attendance beforehand. There is no obligation for you to attend any of the sessions: you may want to attend one or two, or all sessions; this is completely your choice. Some people may find it beneficial to simply be aware of the available support if they did need it. The only requirement of your attendance is that you have previous received care under our service.

You need not be suffering a setback at the time, although this group is perhaps most helpful to those who are. Some people may wish to use the group as a social support session.

All sessions will be run by staff members of the Worcestershire CFS/ME service and are held on the last Wednesday of every other month at Ability House, Worcester.   

Ability House,
St John's Campus,
Henwick Grove,
Worcester
WR2 6AJ

During the session

Each session will last for two hours. The first hour will cover one topic relevant to the management of CFS/ME to help you to recap on information and the skills required. This will usually be led by members of the CFS/ME service, but we also invite guest speakers to come and talk about relevant topics. Some of the topics that will be included in sessions, among many more, are;

  • Pacing
  • Sleep hygiene
  • Managing pain
  • Travelling with CFS/ME
  • Diet 
  • Graded exercise
  • Rediscovering your identity with a chronic health condition
  • Stress management
  • Employment and benefits
  • Many more

Following this teaching there will be a social support hour, in which you will be able to get a drink, meet with other patients, and with staff. Many people find that the chance to build relationships with others with the diagnosis helps to reduce the isolation they feel as a result of the symptoms. This group aims to provide a safe space for you to do this.

Also, during this time members of the CFS/ME team will be available to answer questions or discuss any queries that you may have regarding your condition or the service.

Group meeting dates

‘Bring and share’ resources you have found helpful (books, courses, DVD’s etc) - 27th November 2019  2pm-4pm Ability House, Worcester 

Support for families and carers

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. 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.

 

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.

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

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.

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

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

 

Further information for friends and family members

Worcestershire Association of Carers

Action for ME 

The ME Association 

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 

Action for ME: http://www.afme.org.uk/

Action for ME– children and young people: https://www.actionforme.org.uk/children-and-young-people/introduction/

The ME Association: http://www.meassociation.org.uk/

Worcestershire Myalgic Encephalomyelitis (ME) support group

https://www.meassociation.org.uk/2009/09/worcestershire/

Worcestershire Association of Carers: http://www.carersworcs.org.uk/