Sentinel’s ME/CFS service is the primary chronic fatigue service for the West Devon area. It aims to provide assessment and treatment sessions, for patients diagnosed with ME/CFS.
what is chronic fatigue syndrome?
ME/CFS is a complex, long-term fluctuating condition, affecting multiple body systems; more commonly the nervous and immune system. It is estimated that 250,000 people in the UK live with ME/CFS and 17 million people are acknowledge to have this diagnosis worldwide. It is characterised by a set of symptoms, but it affects everyone differently with varying severity and outlook. However, there are lifestyle changes that people can make to help manage the condition effectively, and this is the primary focus of the service, following assessment and diagnosis.
Currently the causes of ME/CFS are uncertain. Onset can be acute and possible causes include persistent viral infections, immune disturbance, genetic vulnerability and prolonged and persistent stress. International research into the condition and its causes is on-going.
The specialist ME/CFS service is available 3 days per week from Monday to Wednesday, covering the West Devon area. We are a small team consisting of a part-time Administrator, two Medics working 6 hours per month in total, and two part-time therapy staff.
It is for this reason we are unable to keep patients within the service long-term. Instead we are able to offer patients a set number of hourly telephone consultations, providing energy management advice, with the provision of written resources for future guidance following discharge. These sessions are designed to provide an individualised, person-centred programme that aims to support personal goals based on the patient’s preferences and priorities.
approach to assessment, diagnosis and treatment
Many illnesses and conditions can present similar symptoms, therefore, excluding other conditions is an essential part of the process to inform a diagnosis. It is important to know that there is currently no diagnostic test for ME/CFS. It is recognised on clinical grounds alone, when all other causes for the debilitating fatigue and other symptoms have been excluded. In order to do this, it is recommended that patients must undergo thorough medical assessment by their GP first. This can include reviewing medical history and undergoing blood and urine tests, prior to being assessed for ME/CFS within a specialist service. This may require several visits to your GP before a referral is considered appropriate, and no other reason for fatigue and other symptoms is evident. All patients must be referred via their GP and we are unable to accept direct referrals.
The National Institute of Care Excellence offer guideline and recommendations for a range of different health conditions. The recommendations are always evidence-based, and set out the care and services suitable for most people with a specific condition. Sentinel Healthcare Southwest CIC is commissioned to provide treatment based on NICE guidelines. These have been updated for ME/CFS in October 2021, and as a result the assessment and treatment approach within this service has been reviewed to ensure its adherence to the latest NICE recommendations.
In order for ME/CFS to be considered the following 4 symptoms must be present. A person can only be referred to a specialist service if these 4 symptoms have all been present for 3 months or more.
- 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.
- Post-exertional malaise after activity in which the worsening of symptoms:
- is often delayed in onset by hours or days
- is disproportionate to the activity
- has a prolonged recovery time that may last hours, days, weeks or longer.
- 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.
**A person’s fatigue should not be life-long in origin or caused by excessive working hours**
Information for Health Professionals
Specialist ME/CFS services are designed to provide an individualised, person-centred programme that aims to support personal goals depending on the patient’s preferences and priorities. The treatment may focus on the following goals:
- Restoring a balance between activity and rest.
- Increasing a person’s ability to identify factors that precipitate their debilitating fatigue and other symptoms
- Learning effective rest and relaxation methods
- Advising how to manage daily activities by developing energy management strategies to counteract an over/under activity cycle and gaining an awareness of pacing and ways to modify these daily routines.
- Understanding that it is important not to use more energy than people perceive they have and to convalesce and rest as needed. The guidelines highlight the importance for patients learning to stay within their ‘energy limits’.
- Graded exercise programmes are no longer recommended.
- Learning strategies to improve sleep pattern
- Understanding the importance of a healthy balanced diet and how different foods can influence energy levels
- Overcoming difficulties with concentration, memory and information processing
- Increasing participation in valued activities
- Providing advice relating to employment or education, when required
- Appreciating the role that thought processes and driver behaviours can have when managing symptoms and modifying behaviour, and the impact that stress has on the depletion of energy levels.
- Providing advice via the medical team regarding co-existing conditions such as clinical depression and pain management.
- Developing strategies to identify and prevent an exacerbation of symptoms and relapse
It is important to be aware that there are many research studies being conducted around the world. ME research publish news of the latest research studies globally. In their 21 years they have contributed over £2.1 million to ME/CFS studies that pass their rigorous scientific review process. There are 11 projects in 7 countries at present, including the UK, Germany, Spain, USA, Austria, Belgium and Australia.
These focus on four areas:
- Brain and nervous system
- Muscle function and pain
- Heart and circulation
- Infection and the immune system
Recently the following three studies were funded:
The first focusses on brain stem function, including problems with concentration, memory, vision and heart rate control. MRI scans will be used to assess changes related to nerve function within the reticular activation system of the brain stem. this regulates functions affecting attention, sensory perception, cognitive performance and memory, all of which are deficient in ME/CFS, suggesting that nerve signalling in the brain stem is impaired. The plan is to repeat the initial studies using a stronger 7-Tesla MRI scanner.
A second study is also based in Australia, with a focus on the role of mitochondria. Found in most cells in the body, mitochondria are small structures whose main role is to convert energy from food we eat into a form that cells can use, mainly adenosine triphosphate. For this reason, mitochondria are often referred to as power plants of the body. A better understanding of mitochondrial dysfunction in ME/CFS may help in the development of diagnostic tests for the disease and to identify effective pharmacological treatments.
3. Muscle Pain
A third study is being carried out in the UK with a focus on the widespread muscle and joint pain suffered by many people with ME/CFS, having a huge impact on their everyday activities and quality of life. The aim of this research is to identify the precise mechanisms involved. This includes how the experience of pain differs in ME/CFS patients from other people. In addition investigating whether the autonomic nervous system can be ‘calmed’ by non-invasive stimulation of the vagus nerve, which might help inform future treatments in pain.
Feedback from Patients
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