The bodies systems fall out of balance

What causes ME/CFS?

Doctors don’t yet know the exact cause of ME/CFS. What we do know is that several systems in the body are involved, which is why the symptoms can feel so widespread.

Fatigue is a symptom secondary to many conditions, and for most people it resolves in a few weeks or months. In ME/CFS the symptom of fatigue dominates and persists. It can impact your bodies systems ability to function, your cognitive ability and mood. People often say they feel exhausted, drained, foggy, or just totally worn out.

With ME/CFS, fatigue symptoms last and don’t improve with sleep. It can be brought on by even small amounts of activity and can make everyday life very difficult.

NHS website information link
Information and support

Learning about ME/CFS and ways to manage can really make a difference.

The resources below can help you understand the symptoms of ME/CFS, and how it is affecting you. It also includes the guidance we follow from the National Institute for Clinical Excellence (NICE) developed in 2021.

You can also find more information in the BACME resource library,

Severely affected by ME/CFS? 

In Nottinghamshire we are commissioned to provide a treatment only service for people with mild to moderate symptoms. If you are more severely affected, you may require input from broader community services to support more complex needs including clinical observations, feeding and dietary requirements, and tissue viability.  The nearest specialist service for severe ME/CFS symptoms is run by the Derby ME/CFS team. To be seen there, your GP will need to send them a referral, and have funding agreed.

The BACME library also has a helpful guide for people who are more severely affected by ME/CFS.

Attending our service

First appointment and treatment options

Your initial appointment

We work in venues in the community. You will be sent a link and can choose where your appointment takes place — either in person at a local venue or over the phone. You’re welcome to come alone or bring a friend or family member. The appointment will last about 40 minutes.

We’ll talk about your symptoms, severity and duration, and what treatments you’ve already tried.

We’ll also look at how ME/CFS is affecting your life, aspects like sleep, mood, hobbies, family, education or work, relationships, and overall health.

We’ll discuss how our team can help, and agree a plan that works for you. You may be offered a follow-up appointment straight away, or we might offer you some resources to look through before deciding what to do next. Sometimes, we might agree that another service would be useful and refer you there.

Options within the service

We offer group sessions or one-to-one appointments. We can support you for as long as you need and offer regular refresher sessions.

Our team offers symptom based education, shares information, and helps you learn new skills to:

  • Understand your ME/CFS diagnosis.
  • Move towards your values again.
  • Cope with life alongside your symptoms.
  • Handle flare-ups/energy crashes and difficult times.
  • Meet others with ME/CFS by joining group sessions or refresher meetings.
  • Create a care and support plan that’s right for you.

Developing a care and support plan

The ME/CFS care support plan is a personalised document outlining the specific needs and management strategies for someone diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It is recommended in NICE guidance 2021.

It includes details about symptoms, energy management techniques, activity limitations, support required for daily living, and contact information for healthcare professionals involved in your care.

This creates a holistic and comprehensive evaluation of a person’s needs and will be created together by the patient and their specialist therapist.  It can then form part of you annual long term conditions review in your GP practice.

Refresher sessions:
We run regular sessions for anyone who has completed our group or individual programmes to continue to access support for ME/CFS.
These last 90mins (with a break included) and are a mixture of reflection and goal setting, an information refresh plus opportunity for mindful movement, and time to connect and share
ideas and experiences.
People tell us they find this really useful as a reminder to maintain useful skills, get back on track if old habits are creeping in, and to connect with others.

We are a team of therapists who can help you understand and manage ME/CFS.

Below is a bit of information about each of the team before you come along to meet us.

 

Sarah White

Clinical Specialist

I qualified as a Physiotherapist in 1998 and have specialised in the management of persistent pain for over 20 years. I have been involved in the development and delivery of individual and group pain management and mindfulness-based programmes in Nottingham for over 18 years

Mandy Buckley

Clinical Specialist

I am a physiotherapist, qualified in 1988 and have been working in the since 1. After working nearly 20years in the I specialised in Pain at the Kings M Hospital.I joined Pics in 2019. My skill lies in working with groups, but I also see patients individually in a variety of fields including pain, Long Covid, ME/CFS and our young person’s service. My aim in all my work is to help patients have a better quality of life and I find this work very rewarding.

Anna Ruskin

Clinical Specialist

I qualified as a Physiotherapist in 1999 and worked at Nottingham University Hospitals for many years, gaining experience in outpatient and orthopaedic physiotherapy. Since 2009 I have specialised in the management of persistent pain, working for the Nottingham Back and Pain Team for 9 years before moving to PICS in 2018. I now work as a Pain Practitioner and am one of the lead clinicians for the Living Well with Pain Programmes in Greater Nottingham. I have a particular interest in mindfulness-based approaches in pain management and I am a fully qualified and BAMBA registered mindfulness teacher.

Rachel Valentine

Clinical Specialist

I completed my degree in Physiotherapy in 2007. Since then I have worked in Nottingham, completing my junior physiotherapy rotations at Nottingham University Hospitals before specialising in working with people living with persistent pain in 2010. I joined PICS in 2018. I work with people individually and within groups, supporting those with pain to live full valued lives. Over the past few years I have also specialised in Fatigue Management and in particular treating people with Long Covid and ME/CFS. I have recently started a Master’s degree in Public Health.

Geeta Singh

Clinical Specialist

I qualified as a physiotherapist in 2002, working predominantly at Nottingham University Hospitals NHS Trust. I gained experience in many rehabilitation health settings, and this led to a specialist role (working with people diagnosed with Cystic Fibrosis); it was during this time that I gained insight, and developed an interest in working with people who had a life-long condition. In 2014 I began specialising in supporting people in managing persistent pain. As part of this journey, I qualified as a mindfulness teacher and gained experience in other therapeutic models used in this speciality. I joined PICS as a Pain Practitioner in 2020. As well as leading pain programmes and supporting people individually, I now also assess and support people with ME/CFS and Long Covid fatigue. I have a specialist interest in using compassion focused approaches.

Natalie Pretzel

Clinical Specialist

I qualified as a Physiotherapist in 2004 from Coventry University, working in the area of Trauma and Orthopaedics in-patients up until 2022. Throughout my career I developed a strong interest in acute and persistent pain and how they are both managed. I have since moved into a specialised role in Pain Management with PICS in January 2023.

I am totally committed to working with people to live better lives with persistent pain. I am passionate about the mind and body connection and how improving this can help manage the impact of persistent pain.

Beth Warburton

Clinical Specialist

I am a registered Occupational Therapist and have worked extensively in an NHS Mental Health Trust and in Primary Care, delivering proactive care, supporting patients with long term conditions with a whole person approach. I worked in an NHS Staff Wellbeing service providing individual and group mental health support for health and social care staff in Lincolnshire, in response to the physical and psychological impact of the Covid-19 pandemic. I joined PICS in 2022, and really enjoy working with people in the long term pain, ME/CFS and Long Covid fatigue pathway, providing guided self management support both individually and in groups. My special interests in the pathway are managing fatigue, quality rest, sleep and gut health. I hope people will gain a better understanding of their condition and feel well supported, enabling them to engage in active self management approaches, to improve their quality of life.

Sara Temperton-Sowerby

Clinical Specialist

I qualified as a physiotherapist from Sheffield Hallam University in 2011. I’ve worked for 10 years within musculoskeletal departments across Lincolnshire, and South Yorkshire.  I gradually focussed my learning and training more towards working with people with persistent pain and long-term conditions. I joined PICS in 2022 supporting people living alongside persistent pain, ME/CFS and Long-Covid fatigue to empower patients towards optimizing their self-care strategies and improve quality of life. I work with people on a 1:1 basis and also within our Moving On With Pain Programme. I am also working towards my Master’s degree in Advancing Professional Practice alongside my clinical role with an emphasis on the management of long-term conditions.

Jill Parrish

Clinical Specialist

I qualified as a Physiotherapist in 1997. Before my Physiotherapy training, I completed a BSc degree in Psychology. After working in a variety of areas within the NHS elsewhere in the UK, I developed an interest in persistent musculoskeletal pain and supporting people with their longer term self management I have worked as a Clinical Specialist in Pain Management within a multidisciplinary team since 2002. My role now also includes ME/CFS management support. I have worked within the PICS Community Pain & Fatigue Pathway since 2018. I am lead clinician for the ‘Moving WithPain’ programmes. My work involves individual and group work.

What our patients say....

Testimonials

” Doing the group programme helped me understand more about fatigue and some valuable skills. I realised I push myself very hard, this is a habit I need to work with. I am trying to take more rest time for myself and think about energy in a different way”

Tim

“I found the group tiring but really useful.  Doing it virtually meant I didn’t have to travel which I find exhausting, and I made sure I took breaks from the screen during sessions”

Susan

“I opted for individual sessions, but have joined the refresher groups.  There are a lot of people there but it feels like a real community with lots of support and understanding – thank you”

Julia
Some commonly asked questions in the service

Frequently asked questions

Meeting with a therapist from the team either in person in one of our community based locations (GP practices and therapy centres).  You can also have a telephone assessment or video call if this is better for you.  This meeting is approximately 45 minutes.  You are welcome to bring a family member/friend/carer along to this for support.

We will discuss your symptoms, the impact ME/CFS is having in your life, discuss developing a care and support plan with you, and options within our service.

The National Institute for Health and Care Excellence (NICE, 2021) Clinical Guideline for the diagnosis and management of Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) states that the ME/CFS specialist service supporting the person with ME/CFS, should provide them with a care and support plan.

The person with ME/CFS is in charge of the aims of the plan and a copy should be given to their GP and family and carers (as appropriate).

You can have this plan reviewed within primary care annually, to support you if your needs change.

The ME/CFS group is run virtually.  We use the Zoom platform.

It runs for 6 weeks.  Each session last 2 and 1/2 hours (with a good break in the middle).

We cover many topics on the group including understanding your symptoms and dysregulation in the body’s systems, energy management, activity management cognitive and emotional symptoms and stress, diet and nutrition, sleep and communication, along with flare up management.

We invite you to experiment with a number of strategies to support self management.

 

You can access the self management approach individually with one of the team.

This can be in person in one of our community locations, by telephone or video call.

We appreciate this is a long term condition and we are pleased to be able to offer some long term support.

For people who complete either a group or individual programme with us, you are welcome to attend our refresher sessions.

These are run virtually, on zoom, approx 3 monthly.  They are 90mins in duration, and are there to recap points from the programmes and connect with others with ME/CFS.

If you have concerns you wish to discuss individually, you have an open appointment with the service.  This means you are able to contact the team and arrange a review.

If you have a care and support plan, this can be reviewed in Primary care as part of an annual long term conditions review, or you can contact us.

A word on Diagnosis

Your GP can work with you and other relevant medical professionals to make a diagnosis if you feel your symptoms fit the criteria for ME/CFS.

Considering current  NICE guidance (2021) can help with this

https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs

Contact us

If you have a specific query or would like to find out more, please contact us

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