What is Chronic Fatigue Syndrome?
Let’s talk about Chronic Fatigue Syndrome and ME!
As documented by the ME Association, ME stands for Myalgic Encephalopathy or Myalgic Encephalomyelitis.
Myalgic – describes the muscular pain that is often a symptom of the condition.
Encephalomyelitis– describes widespread inflammation in the brain or spinal cord. As there is an absence of research evidence to support this, and the NHS works on the basis that it provides evidence-based treatment, BSMHFT refer to the condition as CFS-chronic fatigue syndrome.
Chronic – Chronic refers to something that continues over an extended period. A chronic condition is usually long-lasting and does not easily or quickly go away.
Fatigue – Extreme and persistent tiredness, weakness, or exhaustion of mental and/or physical origin that is not relieved by rest.
Syndrome – a recognisable complex of symptoms and physical findings which indicate a specific condition for which a direct cause is not necessarily understood.
Chronic fatigue, and Chronic Fatigue Syndrome
The term fatigue can be used to describe difficulty or inability to initiate activity reduced capacity to maintain activity, or difficulty with concentration, memory, and emotional stability (mental fatigue). People may report one or a combination of these symptoms, and they may occur alone or in conjunction with other complaints.
Fatigue is a very common problem. Acute fatigue (lasting one month or less) is most often related to an acute medical condition, which can be diagnosed on the basis of its other clinical manifestations. For example, a patient with the flu will describe fatigue in association with fever and respiratory symptoms. Acute fatigue may also be the result of a recent life stressor.
Chronic fatigue refers to persistent or recurrent fatigue lasting for over six weeks. A specific cause of chronic fatigue can be identified in approximately two-thirds of patients, ranging from heart and lung disease, hormonal imbalances, autoimmune illness, or mental health problems. These are usually diagnosed in Primary Care after a careful review of the clinical history, physical observations, and relevant investigations.
In a small minority of cases, chronic fatigue is explained by Chronic Fatigue Syndrome (CFS).
CFS, also known as myalgic encephalomyelitis (ME), is an illness of uncertain cause. The condition has long been recognized, and many different names have been used to describe it. While underlying objective findings involving the central and autonomic nervous systems, the immune system, and energy metabolism have been described, these have not yet led to a clear understanding of the mechanisms underlying the disease, or to a reliable diagnostic test.
For a diagnosis of CFS to be made, symptoms should be present for at least 3 months, have substantial intensity, and significantly disturb normal function and quality of life.
In addition to fatigue, other criteria include post-exertional malaise, unrefreshing sleep, and cognitive impairment.
People with CFS commonly wake up exhausted and feeling as if they have not slept at all—no matter how long they have been asleep.
Other common symptoms of CFS include chronic pain, Digestive problems, orthostatic intolerance including cardio and respiratory symptoms.
Our Team
The team consists of a Consultant Neuropsychiatrist, Clinical Nurse Specialist and Senior Occupational Therapist and therapeutic staff who specialise in CFS.
Referral Pathway
We are a national service from age 16 and over. You can be referred to the service if you have received a diagnosis by a GP, Rheumatologist or Neurologist. Where a diagnosis is uncertain you can be referred for assessment and diagnosis by our team.
What can I expect from my first appointment?
Your first appointment will be with a Specialist Nurse or with the service Consultant. We offer face-to-face or remote consultations depending on your circumstances.
NICE Guidance: As a service we work within NICE guidelines and focus on education and promotion of self-management:
Your consultation will include, but is not limited to:
- a clinical assessment (including relevant symptoms and history, comorbidities, overall physical and mental health, anything that is known to exacerbate or alleviate symptoms, and sleep quality)
- an assessment of your physical functioning
- the impact of symptoms on your psychological, emotional, and social wellbeing
- your current and past experiences of medicines (including tolerance and sensitivities), vitamins and other supplements.
- a brief dietary assessment (including weight history before and after their diagnosis of ME/CFS, use of restrictive and alternative diets, and access to shopping and cooking)
We will also review your previous investigations and suggest further tests if needed.
What happens after my first appointment?
We will discuss your case in a multidisciplinary meeting and, considering your specific circumstances, will offer you a treatment plan if we feel we are the best service to meet any needs.
Understanding your diagnosis and treatment:
We appreciate that people experience CFS differently and to different extremes. Some will have a similar catalogue of symptoms and others may have more physical than cognitive and vice versa. Understanding the condition is essential to understanding how to manage it.
What treatment is available?
A Symptom and Fatigue Management Course is run by Occupational Therapy.
The course includes education and guidance around activity analysis, fatigue management, pain management education, sleep hygiene, cognitive difficulties, and orthostatic symptoms. It is also an opportunity to meet other people with the condition.
Many therapies have been tried in people with CFS, but none have been proven to be curative. Overexertion in the early stages of the illness is likely to lead to poorer outcomes, so treatment should focus on managing fatigue and avoiding overexertion. Common symptoms such as sleep disturbance, pain, depression and anxiety, irritable bowel, and dizziness and light-headedness can also be addressed.
Remaining active is often important for people with CFS. However, the approach to activity management must be individualized, since doing too much can exacerbate post-exertional malaise.
To minimise post-exertional malaise, therapists and service users must determine individual limits regarding the degree of activity that can be tolerated. We may encourage you to gently push yourself, but you should not try to do too much, even if you happen to have much more energy on one particular day. The objective is not an immediate return to previous levels of functioning, but rather maintenance of a slowly progressive level of activity.
We refer to this process of understanding your limits, adapting your activities to those limits, and gently try to expand those limits, when possible, as pacing or energy management. This is the recommended treatment for CFS according to current guidance from NICE.
We also run a separate Young People’s Symptom Management and Wellbeing Course. Their symptoms may have interrupted their education or limited their employment opportunities. It may have contributed to feelings of social isolation and low self-esteem. This course addresses sleep hygiene, activity analysis, self-esteem and emotional wellbeing, nutrition and lifestyle education and understanding medications and pain.
We also offer a One-to-one therapeutic intervention’s for those with coexisting mental health difficulties such as significant mood and anxiety disorders where we feel a group environment would not be appropriate. One to one can only be offered in these circumstances and will be determined by the clinical team.
What happens after I complete treatment?
The goal of our service is to equip you with the tools you need to understand and self-manage your condition. Therefore, we will discharge you back to the care of your GP once treatment is complete.
NICE guidance states that people with CFS should be reviewed in Primary Care at least once a year.
We are happy to accept re-referrals if there are any new or deteriorating aspects of your condition.
What happens if I miss an appointment?
We appreciate it takes time to get an appointment. It is therefore essential that you let us know if you change your address or phone number, are unable to attend an appointment, or no longer require input from the service.
We will write to you to advise of appointments, and a follow up phone call will also take place to remind you nearer the appointment time.
If you do not attend your first appointment, we will close the referral and inform the referrer. If you miss more than two follow-up appointments, or request frequent cancellations, we will discharge you back to the care of your GP. You can be re-referred at a time when you are able to engage.
Your GP can complete an annual review and re refer you if further specialist support is required.
