Psychology - Salford Royal Myalgic Encephalomyelitis/ Chronic Fatigue (ME/CFS) Psychology Service

Our heartfelt thanks to the people living with ME/CFS who helped us shape this leaflet.

Why am I receiving this leaflet?

You have been referred by your Endocrinologist or other healthcare professional for support from our specialist ME/CFS psychology team.

This leaflet explains what kind of support we can offer you here at Salford Royal Hospital.

Please feel free to take your time and look after yourself whilst reading this leaflet, as it contains a lot of information which we hope you find helpful.

You might also find it beneficial to read it in small sections and give yourself rest breaks in between.

The ME/CFS team at Salford Royal Hospital and what we do

Our team offers assessment and treatment alongside an outpatient service, individual therapy and group programmes for adults (18+) with ME/CFS.

The service is based on the updated NICE (National Institute of Health and Care Excellence) guidelines for ME/CFS (2021). If you come to our service, we aim to:

• Help you understand your condition
• Enable you to develop helpful strategies to manage your symptoms and energy levels
• Support you to reduce distress and increase emotional/mental wellbeing
• Support you to regain function and improve your quality of life

We use a holistic approach, meaning that we look at both the physical and the psychological aspects of the illness. All decisions about the therapy that you receive are made jointly with you in order to develop a personalised plan to help you find ways to self-manage your condition.

The wider team consists of:

Specialist Medical Consultants

Our medics will review your clinical history and decide whether your experiences match the pattern of ME/CFS and ascertain whether there are any symptoms associated with other conditions. They might also request blood tests or other investigations for diagnostic purposes. Our medics will then signpost you to ME/CFS self-management resources, specialist physiotherapy and/or psychology treatment programmes.

Physiotherapy support

Physiotherapists are part of a team of healthcare professionals who help you to optimise your activity levels. For most people with ME/CFS, physiotherapy is an important part of their management.

Individual sessions with a physiotherapist may include:

• Advice and support about pacing and other techniques you can use to manage your fatigue
• Agreeing goals that are important to you
• Using a personalised management plan to support a gradual return to activity, including exercise, if appropriate
• Advice and support about sleep and relaxation
• Advice and support to develop a long-term self-management plan

Psychological support

The psychology team at Salford Royal is made up of a consultant psychologist, psychologist, psychology trainees, and an assistant psychologist. We are here to offer support to people who are living with ME/CFS. The rest of this leaflet explains what kind of support psychologists can offer you.

Living with ME/CFS

What is ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex chronic condition that can affect people in many different ways and varies from mild to severe.

People may experience different symptoms but the main symptom which affects people with ME/CFS is persistent fatigue. This is different from the normal tiredness people feel when well, as it does not normally go away after resting. The fatigue can be severe and disabling, affecting both physical and mental functioning.

People with ME/CFS also report having unrefreshing sleep as well as difficulties with memory and concentration. People with ME/CFS typically experience post-exertional malaise (PEM), whereby symptoms are made worse by seemingly small amounts of increased activity whether physical, cognitive, emotional or social. Other symptoms may include sleep difficulties, joint or muscle pain, headaches, memory issues, and difficulty concentrating.

Who gets ME/CFS?

ME/CFS can affect anyone – men, women and children. It appears to be more common in women from mid-20’s to mid-40’s. It is thought that there are currently over 250,000 people living with ME/CFS in the UK, although it is believed there are many more who have not yet received a diagnosis of their condition.

The ME/CFS Service at Salford Royal Hospital supports adults (18+) who have a diagnosis of chronic fatigue (CFS), also referred to as Myalgic Encephalomyelitis (ME). You might also have had your difficulties labelled as Fibromyalgia or Post-Viral Fatigue Syndrome.

Some common worries we hear from our patients about being referred to a psychologist

“Will they believe me?”

Our team has many years of experience supporting, validating, listening to, and advocating for people with ME/CFS. We will most definitely believe that your symptoms and experiences are real and we are here to work alongside you to find supportive ways of helping you to manage symptoms and improve your quality of life.

“The psychologist will say it’s all in my head”

We can reassure you that our psychologists understand that your symptoms and experiences are real, and we will never say that your fatigue is all in your head. Psychologists are skilled in helping ordinary people live with problems such as the stress of ME/CFS or adjusting to living with a chronic condition.
 
“Will they think I am just being lazy?”

We often hear from patients that they have been told they are “lazy” and we do not believe this is a word we would ever associate with someone living with ME/CFS. Rather, we often see in our patients that they have been working very hard for a long period of time to manage their energy as best they can. Usually, we support people by giving them permission to “do less” first in order to manage their energy and fatigue symptoms.

“Will I be able to engage in therapy if I am so tired?”

Our service is able to offer support for people with mild, moderate and severe ME/CFS. If you need to have shorter sessions, we will support you in finding a baseline for therapy that works for you.

“Will a psychologist be able to help me get better?”

Research has shown that learning new ways to manage your energy and other resources can enhance your lifestyle, increase self-awareness, and substantially improve your health. We cannot provide you with a cure but, given patience, determination and courage on your part, we can help you to achieve a gradual recovery or at least a partial return to previous activity levels. Apart from pacing, another of our aims will be to help you resume enjoyable activities that you may have stopped because of fatigue. It is hoped that this will help to improve your quality of life.

“Will you ask me to do graded exercise therapy (GET)?”

If you decide to increase your physical activity as your goal, we can help you with this, but there will never be an obligation to exercise. Any physical activity undertaken during therapy with us would only be done with your agreement and in line with NICE guidelines. Increases in activity would only happen when you are happy to do so and then only by small steps. If you have a setback in terms of fatigue (commonly known as a crash) we would lower your activity level by an appropriate amount.

Will a psychologist prescribe me medication for my mental health?

Psychologists do not prescribe medication. Rather, they work with people to help understand their difficulties and offer supportive strategies to support people living with a range of conditions. Only psychiatrists, GPs and other qualified medical prescribers can prescribe medication.

What does psychology support for ME/CFS involve?

What will I be asked to do?

First, you’ll be invited for an assessment with one of our psychologists. This could be online, over the telephone, or in- person here at Salford Royal Hospital. The assessment involves asking you some questions to build a picture about what your fatigue and mood look like at the moment, and how we can best support you.

If you both you and your clinician decide that receiving ME/CFS therapy is the right option for you, you will be invited to take part in either a group programme or individual therapy.

The self-management programme involves practical activities and trying out new ways of doing things a little differently. You will need to be prepared to 'give it a go' to access and get the most of ME/CFS therapy.

If you and your clinician decide that now is not the right time for you to have ME/CFS therapy, or if there is another service that might be best placed to meet your current needs, your clinician will discuss your options with you and inform your GP.

ME/CFS group programme

Our 6-week group programme is designed to help people to understand the main strategies for managing ME/CFS. Each week a new topic is covered, including:

• Pacing
• The effects of stress
• Sleep patterns
• Acceptance
• Goal setting
• Managing your mood
• Planning for setbacks
• Gentle stretching and movement
• Relaxation/meditation practices are also part of the programme

The groups are interactive (taking place either online or face-to- face) and allow members to meet other people with ME/CFS. This can be a validating experience as people with ME/CFS can often report feeling isolated and misunderstood.

The group programme also requires you to complete supplementary ‘home practises’ between sessions, or doing gentle stretch and movement exercise tailored to you and your current needs.

Individual Therapy

In addition to offering strategies for self-management of ME/CFS as outlined above, our psychology team is experienced in delivering a wide range of therapeutic approaches to support people living with the condition.

These approaches look at relationships between our thoughts, behaviours and mood. ME/CFS, like most other chronic conditions, is commonly accompanied by low mood and/or stress, which can make the condition worse.

These therapeutic approaches may help you learn techniques to manage ME/CFS symptoms as well as adopting helpful behavioural changes, such as pacing.

The team are also skilled in helping people to adjust to living with ME/CFS. Individual therapy can take place online, over the telephone, or in-person at Salford Royal Hospital.

For further information about the service, please visit Chronic Fatigue Service :: Northern Care Alliance or call 0161 206 5588.