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Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

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

  • Address: Malvern Community Hospital 185 Worcester Road, Malvern, WR14 1EX
  • Reception phone number: 01684 612671
  • Service hours: We are a part-time service and 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. Email: whcnhs.chronicfatigue@nhs.net

About the service

ME/CFS is a long-term illness with a wide range of symptoms. The most common symptom is  debilitating fatigue, worsened by activity and not adequately relieved by rest but other symptoms that have to be present for a diagnosis of ME/CFS are:

  • post-exertional malaise (sometimes delayed in onset, is disproportionate to the activity

and has a prolonged recovery time)

  • unrefreshing sleep or sleep disturbance, including feeling exhausted, feeling flu-like and stiff on waking; broken or shallow sleep, altered sleep pattern or hypersomnia
  • cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

These symptoms should be experienced for 3 months or more, and are often triggered by a viral illness, a stressful life event, a period of chronic stress, or a combination of all of these.

A wide range of other symptoms can also be experienced, including:

  • orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position

         • temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very   cold

         • neuromuscular symptoms, including twitching and myoclonic jerks

        • flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches

        • intolerance to alcohol, or to certain foods and chemicals

        • heightened sensory sensitivities, including to light, sound, touch, taste and smell

        • pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

ME/CFS is a fluctuating condition that affects everyone differently, and symptoms and their severity can change over a day, week or longer. It varies in long-term outlook from person to person – although a proportion of people recover or have a long period of remission, many will need to adapt to living with ME/CFS. The impact that symptoms have on each person’s life varies but can generally be improved with the use of self-management strategies, support and advice. Relapses and flare-ups are not uncommon but with experience and awareness, these can be managed to reduce the impact they have on daily life.

How to refer into the service

It can be difficult to diagnose  ME/CFS 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.

Our referral criteria

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

Have a confirmed diagnosis of ME/Chronic Fatigue Syndrome 

Require specialist intervention for their CFS/ME symptoms

Have a GP practice located within Herefordshire or Worcestershire.

Be over 18 years of age.

Please see the referral protocol or NICE guideline ng206 for details of symptomology and tests that should be done. in order to confirm a diagnosis of ME/CFS

ME CFS Referral Form

 

What we do

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

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

As we have found that virtual appointments (via video call) are beneficial in helping people manage their fatigue, the majority of our interventions are now offered in this way. If, however, you would prefer a telephone call or face-to-face appointment, please let us know as this can be arranged.

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

General information

Once a referral has been accepted, all patients are invited to attend an initial assessment. This is a chance for us to introduce our service and what we can offer, find out more about the person’s symptoms and how they affect daily life, and to provide some basic information about the condition. a A personalised care and support plan will be agreed in collaboration with the therapist and patient. A family member or friend is also welcome to attend this appointment.

The main aspect of our treatment is our Lifestyle Management group programme, held over 9 sessions. It 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 about energy management, sleep, hygiene, stress management, relaxation and mindfulness, managing brain fog and communication, as well as many other 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. 

Following discharge

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

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.

All sessions will be facilitated by staff members of the Worcestershire CFS/ME service

During the session

Each session will last for 1.5 hours, with a screen break halfway through. The first part of the group will cover a topic relevant to the management of ME/CFS and is sometimes led by a guest speaker, talking on an area of their expertise. Some of the topics that have been included in sessions, among many more, are;

  • Pacing
  • Memory and concentration
  • Travelling with ME/CFS
  • Managing setbacks
  • Rediscovering your identity with a chronic health condition
  • Stress management
  • Employment and benefits
  • The Perrin’s Technique

Following this, we have a discussion about the topic and connect with others in the group. There is also opportunity to ask questions or discuss any queries that you may have regarding your condition or the service.

Group meeting dates

ME/CFS group meeting dates

DATE

TOPIC

SPEAKER

8th February 2023, 2 – 3.30pm

Pain management

Sarah Sherwood (psychologist)

5th April 2023

Massage therapy

Jo Cox

7th June 2023

Looking to the future of the RaM group

 

2nd August 2023

tbc

 

4th October 2023

tbc

 

6th December 2023

tbc

 

After the table and sentence stating If you would like to attend this group, please let the team know so that you can sent the link to join

How does the condition affect me?

You probably already know that your friend or family member having ME/CFS 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, they often experience feelings of guilt. We often frequently hear people saying “I should be able to get dinner ready for my children”, or “my partner 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 can be important to manage symptoms of ME/CFS. 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 achieve these things.

When planning ahead, taking part in activities or even sharing information with people with ME/CFS, 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 your relative/ friend – 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 ME/CFS that they could not manage without, 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: https://www.worcestershire.gov.uk/info/20570/carers

Further information for friends and family members

Worcestershire Association of Carers  

http://www.carersworcs.org.uk/

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/

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

 

 

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/