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 linkThe 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.
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.
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:
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.
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.
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
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