Yorkshire Fatigue ME/CFS Service

We provide an assessment and rehabilitation service for people in York and North Yorkshire who have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

ME/CFS is a complex multisystem condition which means people can experience a wide range of symptoms which includes debilitating fatigue which fluctuates with activity (post-exertional malaise), sore throats and tender glands, brain fog, sleep problems, dizziness, palpitations, digestive symptoms and pain.

There can be different reasons why someone develops ME/CFS and there can be different factors that contribute to the severity of the symptoms experienced.

We offer comprehensive assessments and we then decide together on a treatment plan to meet your needs.

We see adults with ME/CFS where treatable medical causes have been addressed.
Assessments are with a Specialist Occupational Therapist or Special Interest GP.
We offer group or individual treatment sessions, following the STEP Programme
We accept referrals for people with mild, moderate and severe ME/CFS.
We can provide sessions by telephone or Teams video call or face-to face.
We have some capacity to offer home visits for people who are severely affected.

Unfortunately our service is not currently able to see children and young people, but we are keeping this under review and will re-instate this provision when we are able to.

The STEP Programme

The STEP Programme helps you to understand the things that can affect your symptoms. It takes you through stages of stabilising and then when you are able to, we will support you with gradually increasing your activity levels. A qualified therapist will assess your needs and how you can use the programme to help your recovery. STEP

The STEP programme has been designed to address all of the factors that can contribute to the dysregulated physiological responses that generate the symptoms of ME/CFS. More information about Dysregulation is available in the BACME Understanding Dysregulation in ME/CFS.

Referral criteria

Referrals must come from a GP for people who:

have been diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by a GP or specialist.
have experienced symptoms suggestive of ME/CFS for 3 months or more and require a diagnostic assessment.

The NICE Guideline for ME/CFS diagnostic criteria requires all of the following symptoms to be present before considering a diagnosis of ME/CFS:

-Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
- A delayed worsening of symptoms after exertion with a slow recovery time, disproportionate to the activity.
- Unrefreshing sleep or sleep disturbance (or both), which may include feeling exhausted, feeling flu-like and stiff on waking, broken or shallow sleep, altered sleep pattern or hypersomnia.
- Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Prior to making a diagnosis of ME/CFS, other possible causes for the symptoms need to have been considered and ruled out. This will require a minimum set of blood tests along with other investigations as appropriate depending on what symptoms are occurring. Standard blood tests are expected to be normal in ME/CFS.

Our service does not have access to request investigations, so we require all relevant tests to be completed prior to referral.

Further guidance on the diagnosis of ME/CFS and the required investigations is available in the BACME Primary Care Guide to ME/CFS

The NHS England e learning module on ME/CFS has been launched this week. The links below are for the general learning programme aimed at anyone with an interest. Registration is needed to complete the training, however this is free of charge.:

https://www.e-lfh.org.uk/programmes/mecfs-elearning/ for full programme page

https://learninghub.nhs.uk/catalogue/mecfselearning for a more direct link