The ME/CFS Service supports people who have a diagnosis of (CFS), also referred to as Myalgic Encephalomyelitis (ME). You might also have had your difficulties labelled as Fibromyalgia, or Post-Viral Fatigue Syndrome.
What is CFS?
The cause of the condition is as yet unknown. What we do know is that it is a condition consisting of various signs and symptoms, the main one being persistent and excessive tiredness or fatigue made worse by activity, and not alleviated by rest.
Other symptoms may include:
- Muscle and joint pain
- Sore throats
- Tender lymph glands
- Headaches
- Disturbed sleep
- Memory & concentration problems, commonly referred to as brain fog.
- Dizziness & poor balance
- Digestive disturbances
- Fatigue that feels very different from ordinary tiredness
- More sensitive to light, sound and smells
What keeps ME/CFS going?
An individual’s ME/CFS symptoms are likely to be exacerbated by unhelpful patterns of ‘boom-bust’ activity or by high levels of stress or emotional distress.
We know that physical, psychological, social and emotional factors can all be associated with ME/CFS and can interact in a complex way which serves to maintain your symptoms. Exploring these factors with a psychologist can be helpful.
Meet the Chronic Fatigue Service team:
Dr Sara Low
Consultant Counselling Psychologist – Chronic Fatigue service
Dr Low studied her undergraduate degree at the University of Kent before taking up a doctorate at the University of Surrey, where she qualified in 2007.
She started her career working in IAPT (Improving Access to Psychological Therapies) before moving to Salford Royal Hospital two years later.
Here she spent her initial eight years working in the Renal Department, before moving to General Medicine and finally the ME/CFS service.
During the pandemic, Dr Low helped to set up the long COVID service which is now an integral part of the Clinical Health Psychology department.
Her accreditations include PsychD Counselling and Psychotherapeutic Psychology and BSc Psychology with Computing.
Her clinical and research interests include the link between chronic fatigue and trauma and how personality factors affect chronic fatigue.
Miss Zahra Younas
Assistant Psychologist - Long COVID, Chronic Fatigue, Weight Management and Bariatric Services
Miss Younas is an assistant psychologist working across the Long COVID, Chronic Fatigue, Weight Management and Bariatric Services within Clinical Health Psychology.
Her accreditations include BSc Hons Psychology and MSc Clinical & Health Psychology.
Who is the ME/CFS team?
There is a multidisciplinary team based here at Salford Royal that includes:
- Psychologists
- Assistant Psychologist
- Specialist Medical Consultants
- Physiotherapists
The team offer assessment and treatment alongside an outpatient service, individual therapy and group programmes.
ME/CFS group
This 6-week course is designed to help people to understand the main strategies for managing the condition. 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 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 course also requires you to complete supplementary ‘home practises’ between sessions, or doing gentle stretch and movement exercise.
Individual Therapy
Our team are experienced in delivering a wide range of therapeutic approaches. These include:
- Cognitive Behavioural Therapy (CBT)
- Acceptance and Commitment therapy (ACT)
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 approaches may help us adopt techniques to manage these symptoms as well as adopting helpful behavioural changes, such as pacing.
Once you have been referred to the ME/CFS Clinical Health Psychology Service we will invite you to attend for a comprehensive assessment looking at all biological, psychological and social aspects. This will usually be over two 50-minute sessions. After the assessment we will discuss further treatment options with you.
The team offers an outpatient service Monday to Friday, and you will typically be offered (as a first step) a place on one of our group programmes which will take place here at Salford Royal. However, individual therapy can also be offered depending on an individual’s needs.
We are located on the ground floor of the Clinical Sciences Building, with the entrance opposite A&E. You should receive a map with your appointment letter, which will include the location of our car parks. The most convenient car park for accessing the Clinical Sciences Building is the North car park. Please be mindful that there can be queues for parking at times, so allow plenty of time to get to your appointment.
Use this link to access directions to Salford Royal.
Accessibility
As a service, we pride ourselves on being inclusive. We are aware that illness and disease affect everyone and we will strive to offer a responsive and sensitive service to you whatever your lifestyle or faith, and take account of your cultural and linguistic needs. We are also open to receive feedback on our service to continually improve and encourage those of you who have attended the department to let us know your experiences and any ideas you have.
There is wheelchair-friendly access to the building via a ramp. Please let us know if you require any other adjustments to enable you to access the building.
Please note that we are not a crisis team, and we are not able to provide on-the-day appointments. If you feel that you need urgent mental health support, or you do not feel able to keep yourself safe, then please contact your or GP, your local crisis team or attend A&E. If you are an inpatient at Salford Royal, or you do attend A&E, then you may be referred to The Department of Clinical Health Psychology offers psychological therapy for adults who would like support with their psychological issues connected to their physical health difficulties.
We work closely with medical and allied health professionals in each team to deliver high quality psychological care alongside medical care. We are not medical doctors and do not prescribe medication. Please see each speciality for further information.
Referrals are accepted for people aged 18 years or over. There is no upper age limit providing the criteria for referral are met, although in some circumstances an Older Adult Mental Health Team may be appropriate for people over the age of 65.
We ask that referrals are made by a qualified medical professional or a member of staff who is part of an allied health profession.
We are unable to accept referrals for people who:
- Suffer from head injuries, dementia or neurological problems
- Are already taking part in psychological therapy elsewhere. Under some exceptional circumstances it may be necessary to receive treatment with another mental health team at the same time as undergoing therapy at the Department of Clinical Health Psychology, e.g. when a person is already being seen by a Community Mental Health Team, Substance Misuse Team etc.
- We are happy to receive referrals for people who suffer from a learning disability as well as a health condition. We are unable to accept referrals for individuals who only wish to focus on issues connected with their learning disability.
- Suffer from a severe and enduring mental health condition such as psychosis, bi-polar disorder or personality disorder unless they have been assessed by a psychiatrist and their condition is now stable.
Due to a very high demand on our service, we regret that there are waiting lists. Due to this there will be a delay before people are offered their first appointment.
Referrals can be made by a referral letter or an e-mail to psychology.referrals@nca.nhs.uk or for health professionals working at Salford Royal, an order can be placed via EPR.
Please do not hesitate to contact us should you wish to discuss a referral or a patient’s psychological wellbeing.
If you are an inpatient at Salford Royal, or you do attend A&E, then you may be referred to the Mental Health Liaison Team. There is also an Out of Hours Helpline available.
Apps
ActiveME
This app was designed to help people with ME/CFS track and monitor their daily activity levels. Activity patterns can be reviewed, and standards set. Allows the user to develop a daily baseline of energy levels, suitable for increasing in regular steps. Weekly charts can be emailed in PDF (perhaps to a doctor, or to a carer).
Some people with symptoms of fatigue struggle to remember to do things, and apps can be helpful for reminders or for breaking things down into steps. These are an example of some apps you can use:
Remember the Milk - make lists, set reminders, break things down into steps. Can include priority, due date, repeats etc.
Google Keep – a note taking app, can use dictation rather than writing, can also attach an image
Todoist – can include location features (e.g. so when you’re at the shop it reminds you to buy milk) and share with others
Books
Explain Pain
Authors: Lorimer Moseley & David Butler
Publisher: Noigroup Publications
ISBN: 978-0987342669
Butler and Moseley's Explain Pain kicked off a revolution in therapeutic neuroscience education and has become the go to pain bible for clinicians and sufferers alike.
Why We Sleep: The New Science of Sleep and Dreams
Author: Matthew Walker
Publisher: Penguin
ISBN: 978-0141983769
In this book, the first of its kind written by a scientific expert, Professor Matthew Walker explores twenty years of cutting-edge research to solve the mystery of why sleep matters.
The Seven-Day Sleep Prescription
Author: Aric Prather
Publisher: Penguin Life
ISBN: 978-0241600344
Renowned sleep scientist, Dr Aric Prather, studies sleep for a living and the first - and most important - thing he'll tell you about it is that we're all unintentionally getting in the way of our own sleep.
Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME (2009)
Authors: Bruce Fernie and Gabrielle Murphy
Publisher: Karnac Books
ISBN: 9781855755376
This book is written to help patients to develop and apply new insights into overcoming some of their specific symptoms as well as coping with CFS/ME, both during the course of their therapy and afterwards.
Fighting Fatigue: Managing the Symptoms of CFS/ME (2009)
Authors: Sue Pemberton and Catherine Berry
Publisher: Hammersmith Press Limited
ISBN: 9781905140282
This book offers straightforward and specific expert advice, accompanied by real life stories, on managing different aspects of everyday life that can affect CFS/ME.
Living with Fibromyalgia (2010)
Author: Christine Craggs-Hinton
ISBN: 1847090621
An easy read with practical tips and written in a caring way. Provides sensitive tips on how to cope physically, mentally and emotionally with Fibromyalgia.
Overcoming Chronic Fatigue (2005)
Publisher: Robinson
Authors: Mary Burgess and Trudie Chalder
ISBN: 9781849011327
This is a self-help guide that can help you to manage your fatigue and overcome the restrictions upon your life that result from it.
Overcoming chronic pain: A self help guide to using cognitive behavioural techniques (2005)
Authors: Frances Cole, Helen Macdonald, Catherine Carus, Hazel Howden-Leach.
ISBN: 9781841199702
Practical ways to improve sleep, relaxation, relationships, fitness and pacing of activities.
Websites
Action for ME
www.actionforme.org.uk
Action for ME’s website provides lots of information about CFS/ME including advice about benefits, welfare and employment rights, local resources, and information booklets you can download.
Association of Young People with ME (AYME)
www.ayme.org.uk
The Association of Young People with ME (AYME) is a UK charity that provides support for children and young people aged up to 26 who have CFS/ME. AYME offers help and support parents, carers and professionals in health, education and social care.
This site shares some of the wide range of information and experience AYME have available, including features on health, education and real life accounts from young people with CFS/ME. AYME run a members-only message board, where members can talk to each other online. If you are a young person in the UK who has ME/CFS, joining AYME is free.
British Association for Chronic Fatigue Syndrome/ME (BACME)
www.bacme.info/BACME
BACME is a multidisciplinary organisation which promotes and support the delivery of evidenced based treatment for children, young people and adults with CFS/ME throughout the UK. BACME have written a Therapy and Symptom Management Guide, based on clinician expertise, patient experience and the best available evidence, and is free to download from their website.
Fibromyalgia Association UK
www.fibromyalgia-associationuk.org
Fibromyalgia Association UK is a registered charity administered by unpaid volunteers. FMA UK was established in order to provide information and support to sufferers and their families. In addition, the Association provides medical information for professionals and operates a national helpline.
My Pain Management
My Pain Management is for people who are experiencing chronic pain. It includes several interesting modules to help you gain the best from self-managing you own condition. For instance, in ‘Planning for Change’ you will read about How We Change, The Process of Change, Changing Your Response to Chronic Pain, and Taking Action.
Pain Science
A good explanation of pain; what it is, how people experience it, different impacts and treatment options as well as multiple self-help guides.
Salford Fibromyalgia Support Group
www.salfordfibromyalgiasupport.co.uk
A local support group which meets in Eccles on a monthly basis