Locomotor ME/CFS service

The Locomotor ME/CFS Service is a specialist community based service located in Hackney, providing assessment and management for adults aged 18 and above living with ME/CFS or suspected ME/ CFS. City & Hackney GPs can refer into the service if suspecting a diagnosis and for confirmation of a diagnosis where symptoms meet the criteria threshold for confirmation.

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a fluctuating condition affecting many body systems.

These are some of the common symptoms:

• fatigue that feels very different from ordinary tiredness
• aching muscles or joints
• sleep disturbance/un-refreshing sleep
• problems with concentration/memory (brain fog)
• digestive problems
• more sensitive to light, sounds and smells
• generally feeling unwell (flu like symptoms)
• post-exertional malaise (sometimes called payback)
• dizziness/headaches
• sore throats and tender lymph glands.

The Locomotor ME/CFS Team can help you to:

• gain an understanding of ME/CFS and the model of dysregulation which helps to explain what is happening inside your body and why you may be experiencing certain symptoms
• learn different strategies and skills to reduce the suffering caused by ME/CFS
• work towards being able to do more of the things in life that are important to you
• try out different ways of responding to understandable feelings of sadness, anger, worry or fear about ME/CFS
• look at life problems and stressors, which can further affect how people cope with your ME/CFS

In line with the national guidelines, our service offers an interdisciplinary approach. Our team consists of:

• ME/CFS Specialist Physiotherapists
• ME/CFS Specialist Psychologists
• ME/CFS Specialist Occupational Therapists

Your first assessment will be a one-to-one assessment with two members of the ME/CFS Service team which can take up to two hours. It will be a chance to discuss further what we offer and answer any questions you may have. An interpreter can be arranged if necessary.

By the end of this assessment, a plan will be made based on the goals you would like to work towards. This may include further appointments within the ME/CFS service, referral to other services, or a discharge from the ME/CFS Service. We will write to you and your GP and let them know the outcome of the assessment and any recommendations or plans that we make.

If a plan is made for you to attend further appointments in the Locomotor ME/CFS Service, these may be individual appointments with a physiotherapist, occupational therapist or a psychologist.

You will need to be registered with a Hackney GP. We require the GP to complete the ME/CFS referral form and have completed all the necessary blood tests and investigations.

Useful links for patients

Action for ME  - Action for ME’s website provides lots of information about ME/CFS including advice about benefits, welfare and employment rights, local resources, and information booklets you can download. We have worked closely with Action for ME to develop a self-management guide called Pacing for People with M.E. which can be downloaded free from this webpage: https://www.actionforme.org.uk/resources/our-publications/booklets/

The M.E. Association  - The M.E. Association is a medical charity providing information about ME/CFS and funding research. They offer a wide range of information leaflets.

The British Association for Clinicians in ME/CFS (BACME)  - BACME is a multidisciplinary organisation which promotes and support the delivery of evidenced based treatment for children, young people and adults with ME/CFS throughout the UK. BACME have written a Therapy Guide and a Symptom Management Guide, based on clinician expertise, patient experience and the best available evidence, and both are free to download from their website.

Access to Work  - An Access to Work grant can pay for practical support if you have a disability, health or mental health condition to help you:

• start working
• stay in work
• move into self-employment or start a business

National Institute for Health and Clinical Excellence (NICE) Guideline for ME/CFS - This guideline is about the care of people with ME/CFS in the NHS in England and Wales. The booklet explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with ME/CFS, and parents or carers of people with the condition. It may also be useful for other family members or for anyone with an interest in ME/CFS.

NHS Information

National Institute for Health and Clinical Excellence (NICE) Guideline for ME/CFS - This guideline is about the care of people with ME/CFS in the NHS in England and Wales. The booklet explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with ME/CFS, and parents or carers of people with the condition. It may also be useful for other family members or for anyone with an interest in ME/CFS.

NHS Website - An overview of ME/CFS and its management.