Following your referral to the ME/CFS service

We have created this webpage to guide you through the next steps and provide helpful information, advice and support while you wait for your first appointment.
If you need further assistance or have any concerns, please email MECFS@ecchcic.nhs.uk or call 01493 809977.

What happens next?

We have sent you a pre-clinic questionnaire to complete. Please return this to us within six weeks. If you have any questions regarding the questionnaire, please email MECFS@ecchcic.nhs.uk or call 01493 809977.

Once we have received your completed questionnaire, you will be placed on a waiting list for your first appointment with the service. We will send you details about your appointment as soon as they become available.

In the meantime, we have put together some useful information about managing your fatigue and other places to find help and support.

Introduction to fatigue management

There can be many reasons why you might experience fatigue, including poor sleep, vitamin deficiencies, stress and underlying medical conditions.

Fatigue can significantly impact daily life, making it difficult to work, study, manage a household, or fulfil roles such as parenting or caregiving.

People with fatigue often find themselves in the “boom and bust” cycle, where they push themselves to do more on some days (boom), and then find they are more fatigued and experience a crash on the following days (bust).

Breaking the “boom and bust” cycle

The first step in managing fatigue is establishing a stable baseline of activity. This means maintaining a consistent level of activity each day to prevent overexertion and crashes.

Think of your energy levels like an old phone battery which needs constant top-ups throughout the day. Your body needs regular rests to recharge you in between activities to help you manage your fatigue throughout the day.

Activity Management

Everything we do requires energy.  There are four main types of activity:

  • Physical (e.g. walking, housework)
  • Cognitive (e.g. reading, screen time)
  • Social (e.g. conversations, social events)
  • Emotional (e.g. stress, excitement)

When you have fatigue, it is important to try and manage your activities so you can do those you need and want to, while avoiding a “bust” or “crash”.

Remember that even small activities – such as checking your phone or chatting with a friend – can all use energy and increase fatigue.

Key principles of activity management
  • Pacing, planning and prioritising
  • Routine
  • Energy conservation
Pacing

Break activities into smaller chunks, with rest breaks in between.

  • Example: Instead of vacuuming your whole house at once, vacuum one room, rest, and continue later or the next day.
  • Take regular breaks from your screen when working or looking at your phone.
Planning

Plan your activities across the day, week or month to spread them out.

  • Example: Space out appointments and social events to allow for recovery time.
  • Rest before and after activities such as shopping or hospital appointments.
Prioritising

Try to prioritise your activities so that you can do the things you want or need to do most.

  • Prioritise essential tasks and self-care.
  • Make time for activities that you enjoy.
Building a routine

Routine is an important part of activity management; a consistent daily routine helps to stabilise symptoms.

  • Try to wake up and go to bed at the same time each day.
  • Include regular rest breaks to prevent energy crashes.
  • Experiment with different levels of activity and rest to find the right balance for you.
Energy conservation

Try and find ways in your daily routine to complete the same activities, using less energy.

  • Sit down while brushing your teeth or preparing meals
  • Consider online grocery shopping instead of going to the supermarket.
  • Ask for help when needed instead of pushing yourself.

Resting Well

When establishing a routine of activity and rest, it is important to ensure that you are resting as well as possible. 

The amount of rest you need will be unique to your needs and situation.  Rest can be impacted by factors outside of your control such as work, school or caring commitments.  It is important to try and prioritise rest as this is the most important tool for managing fatigue.

Good quality rest means resting your mind and body as much as possible. 

Reading, watching television or looking at your phone can be restful activities, but still use cognitive energy.

Examples of good quality rest include:
  • Relaxation and meditation tracks
  • Listening to calming music or a familiar audiobook
  • Breathing exercises and mindfulness

Think about the position you are resting in to make sure your body is well supported, and that you are as comfortable as possible.

Relaxation can also help with managing pain, stress and emotions.

 

REMEMBER:
  • Don’t push yourself.
  • Pace, plan and prioritise activities.
  • Try and establish a routine of activity and rest.
  • Be kind to yourself.
  • Rest is the most effective tool for managing fatigue.

For more guidance on sleep, nutrition and goal setting, please visit our website: Self Management | ECCH ME/CFS Service

Help and Support

While you wait for your appointment, we encourage you to explore our self-management webpage. This is not designed to be looked at all at once; take your time and implement strategies as you feel able.

Other useful resources
Here are additional organisations that provide information and support for ME/CFS:

 

If you have any urgent questions, you can contact the team via:

Email: mecfs@ecchcic.nhs.uk

Phone: 01493 809977

 

If you are experiencing a marked/severe exacerbation or any new symptoms, please see your GP for further medical advice.