ME/CFS Service
Welcome to the Leeds and West Yorkshire ME/CFS Service, which is a specialist NHS service for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).
We are currently carrying out our implementation of the New NICE guidance across the service.
Healthcare professionals can now download our newly updated primary care booklet – please scroll down to the Professional resources section on this page.
Still experiencing fatigue after a recent infection?
We are keen to support referrers, patients and other services by sharing useful links to information on post-Covid recovery and rehabilitation.
Post-viral fatigue is recognised to sometimes last for many months after the initial infection but, in the majority of cases, people make a full recovery. A diagnosis of ME/CFS is only considered if there is evidence of Post-Exertional Malaise as well as multiple additional new symptoms alongside the fatigue such as cognitive symptoms, sleep changes and orthostatic problems and that the symptoms have persisted for over three months in a way which is significantly affecting day to day life.
We therefore encourage good self-management in the meantime along with active review so referral can be considered if the symptoms persist and are interfering with daily activities three months after the initial infection.
We are keen that patients receive appropriate rehabilitation advice regarding recovery from infection. Activity needs to be done in small amounts balanced with rest periods at a level that doesn’t cause an escalation in fatigue. Trying to keep to good routines with eating and sleeping is helpful. It is also important that over exertion mentally or physically is avoided as this can perpetuate or escalate a fatigue condition so patients will often need to be supported during the time that they will have to reduce their daily activities. This may include prolonged periods off work or studies or adaptations being made to take account of the fatigue and the need for regular rest periods.
A helpful patient guide to managing Post-Viral Fatigue is available to download.
There is also additional advice on the BACME (The British Association for CFS/ME) and Royal College of Occupational Therapy websites regarding managing fatigue post infection whist researchers and clinicians start to understand more about the recovery trajectory of such patients with COVID related fatigue and other symptoms.
For patients who have been in hospital, including those who required ventilatory support, you may find the rehabilitation program developed by Lancashire Teaching Hospital a useful resource.
Count me in
The ME Association are currently conducting a survey asking about people’s experience of NHS care and asking them to rate specialist services they have accessed.
We think it is really important to capture the voice of anyone accessing our service now, as well as in the past, and if you’d like to take part please see the links below.
The survey has just launched and is going to run for 4 months with the report published at the end of the year.
To share your health experience, complete the Count Me In ME Association survey and for more information, visit the ME Association’s ‘Count ME In’ campaign launch news story.
About the service
The Leeds and West Yorkshire ME/CFS Service is a specialist NHS service for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).
Our service is for adults aged over 17 years.
Our individual treatment plans and different options for treatment help people make sense of their condition and work towards recovery.
The aims of our service are to:
- improve your quality of life – people say we are giving them their lives back
- help you on a journey towards recovery
- help you to continue in education and work if this is important to you
- help you understand your condition
- involve and support your carers, family and friends too
Our service operates Monday to Friday, 8.30am to 4.30pm and is based in the Therapy Suite on the first floor of The Newsam Centre.
What to expect
Our service provides:
- 90 minute assessments by a specialist team and we devote time to gain a shared understanding of your condition
- individual or group programmes to help you recover
- the opportunity for you to access a range of professionals, including 14 qualified NHS clinicians
- liaison with your GP during your recovery
- different options for treatment, including home-based rehabilitation and home visits for people whose lives are severely affected by ME/CFS
- consultations and advice by video conferencing and telephone if needed
- consistently good outcomes to improve your quality of life
Our high patient satisfaction results show we are valued by people who use our service.
More information on what to expect if you are referred into our service is available in the referrals section further down this page.
Our team
Our service is provided by a team of professionals, all with specialist expertise and includes:
- doctors
- occupational therapists
- nurse
- clinician lead and matron
- dietician
- cognitive behavioural therapist
- physiotherapist
We are supported by a team of administrative staff. We also value the input and involvement of former patients and carers, who make a unique contribution, as volunteers, to developing our service.
What people say about our service
Watch the following video where one of our service users, John talks about how he came to terms with ME/CFS, overcame his own stigma and how he received help from our ME/CFS services.
Referrals
Referrals into our service are made by your GP or another health professional involved in your care. They will need to make a referral to us that includes your recent blood tests and other essential information we require.
We are an outpatient adult service and accept referrals for people from the age of 17 upwards. We now accept referrals from within the NHS West Yorkshire ICB (in Leeds) which is part of the West Yorkshire Integrated Care Board and wider West Yorkshire Integrated Care System (WYICS). This includes Bradford District and Craven, Calderdale, Kirklees, Leeds, and Wakefield District. This way of working together, implemented in 2022, replaces the need for accessing funding for out of area patients as was necessary previously. Despite these changes, we continue to request that referrers take into account our criteria for referral and other relevant services closest to the patients registered GP practice. We may consider referrals outside this area and we accept referrals for people with all severities of ME/CFS.
There is no test to tell whether someone has ME/CFS. The diagnosis, therefore, is largely dependent upon the history of the symptoms and exclusion of other causes or conditions that cause similar symptoms.
We will make sure that other illnesses have been excluded by your GP or other health professional involved in your care before we offer you an assessment. This will mean you having some routine tests such as blood tests before referral to our service.
Once this stage is complete we will then write to you to request that you contact us to arrange a suitable time to come for your initial assessment.
Resources for professionals making a referral into our service
Please find our newly updated primary care booklet Leeds ME/CFS Primary Care Guide.
Professionals making a referral to our service
To make a referral into our service, complete a referral form and submit this in one of the following ways:
- to make a referral by post, please download, complete and return a referral form to Leeds and West Yorkshire ME/CFS Service, Therapy Suite, 1st Floor, The Newsam Centre, Seacroft Hospital, York Road, Leeds, LS14 6WB
- to make a referral by email, please download, complete and return a referral form using secure email such as an nhs.net address to cfsme.lypft@nhs.net*
- to make a referral by fax please download, complete and return a referral form to 0113 85 56337.
* Please be aware any information sent via email that isn’t from a secure email address such as an nhs.net address is at risk and as such should be encrypted.
You can find out more about MS-Office document encryption in the appendices of our Trust’s Safe Haven Guidance.
Visit our ‘how we use information about you’ page for more information and a copy of this guidance.
Get in touch
The Leeds and West Yorkshire ME/CFS Service is based in the Therapy Suite on the first floor of the Newsam Centre and can be contacted on 0113 85 56330 / 0113 85 56331 / 0113 85 56334 or by email: cfsme.lypft@nhs.net.
The fax number for this service is 0113 85 56337.
Useful resources providing support and advice for ME/CFS patients
Action for ME http://www.actionforme.org.uk/ provide helpful booklets on the condition, pacing, employment and welfare rights, includes section for children/young people. Supports the CMRC (research collaborative). They are tracking all the advice regarding the current COVID-19 situation and how this applies to people living with ME/CFS on their website.
ME Association http://www.meassociation.org.uk/ links to local groups and telephone line for information and support
Useful Websites:
BACME – http://www.bacme.info British Association for ME/CFS professionals – NHS services map, symptom and therapy guide, and shared practice document on severe ME/CFS
Autonomic dysfunction – http://www.dysautonomiainternational.org American site providing information and advice for managing autonomic dysfunction. http://www.potsuk.org/ is a UK site specifically about Postural Orthostatic Tachycardia Syndrome with a section for medics as well as patients and families.
Hypermobility syndromes: http://hypermobility.org/ Information for patients and professionals
British Dietetic Association https://www.bda.uk.com/ provides basic dietary advice on a wide range of subjects including a food fact leaflet for CFS and various food intolerances/allergies.
CMRC – Research conference videos available from the Action for ME YouTube channel https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg/videos
Book (also available as an eBook) – Fighting Fatigue: a practical guide to managing the symptoms of ME/CFS (Pemberton & Berry 2009)
Mental Wellbeing and Coping especially during the current Coronavirus crisis:
- https://www.bbc.co.uk/news/health-51873799 good article on dealing with coronavirus anxiety
- https://www.anxietyuk.org.uk/
- https://mentalhealth.org.uk
- https://chatterpack.net/blogs/blog/list-of-online-resources-for-anyone-who-is-isolated-at-home
- https://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines
- https://web.ntw.nhs.uk look for self -help guides
- https://www.getselfhelp.co.uk/
- https://bit.ly/3briPpe great video by Russ Harris on coping with the Coronavirus crisis
Mind – Online support groups and general information about mental health 0300 5000 927
https://www.mindwell-leeds.org.uk/
Samaritans – offering emotional support 24 hours a day on the phone 116 123 and online https://www.samaritans.org/
Mental health Foundation – Offers an online peer support community
Rethink advice and information line – Benefits, debt and money issues, Police and court and MH rights.
Shout– For people experiencing a Crisis text service for people experiencing suicidal thoughts, thoughts to self-harm. Text Shout on 58258