What is CFS/ME?
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or encephalopathy) (CFS/ME) is a relatively common illness with each general practice anticipated to have up to 40 patients with the condition. It can be as disabling as multiple sclerosis, systemic lupus erythematous and rheumatoid arthritis.
CFS/ME involves a complex range of symptoms beyond presenting with fatigue and malaise. The pattern, duration and intensity fluctuate and vary between people, who may have difficulties for many years before diagnosis. The cause and disease process is not fully understood but there are practical ways in which to manage and stabilise the condition.
CFS/ME is recognised on clinical grounds alone, and should be considered if a person has fatigue with all of the following features:
- new, or with a specific onset (that is, it is not lifelong)
- persistent and/or recurrent
- unexplained by other conditions
- has resulted in a substantial reduction in daily activity level
- characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)
and one or more of the following symptoms:
- difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle
- muscle and/or joint pain that is multi-site and without evidence of inflammation
- painful lymph nodes without pathological enlargement
- sore throat
- cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing
- physical or mental exertion makes symptoms worse
- general malaise or 'flu-like' symptoms
- dizziness and/or nausea
- palpitations in the absence of identified cardiac pathology
‘Red flag’ features may suggest other causes of symptoms and comorbidities such as features of:
- localising/focal neurological signs
- inflammatory arthritis or connective tissue disease
- cardiorespiratory disease
- significant weight loss
- sleep apnoea
- clinically significant lymphadenopathy
Referral is by the service’s proforma. Please ensure it is fully complete before sending by fax to the department addres.
A Consultant Physician and members of the multi-disciplinary therapy team review each referral and allocate to attend the service ‘Information Session’ if diagnosis is confirmed. If further clinical review to confirm or exclude CFS/ME is necessary, allocation to the diagnostic clinic is made.
Information for Patients
- Condition triggers: A combination of events, circumstances and illnesses can contribute to the condition developing, such as an infection, physical or emotional trauma, persistent stress.
- Symptoms: Please note this is not an exhaustive list and other cause of symptoms must be investigated and ruled out or managed, before diagnosis.
- Physical: abnormal daytime fatigue due to sleep being disordered. Muscle weakness that can also cause palpitations, dizziness, breathlessness, higher heart rate and pain. Headaches, sore throats, sensitivity to light/ noise / food /drink / smells, nausea and IBS type symptoms can all relate to increased nervous system reaction.
- Cognitive: concentration, word finding and information processing difficulties, inability to focus on screens, reading and reduced attention capacity all relate to unrefreshed and restless sleep. A racing mind and feeling of restlessness can relate to increased nervous system activity to overcome physical and cognitive fatigue.
- Emotions: reactive anxiety and depression, helplessness and feel not in control, frustration at limitations to lifestyle.
- Sleep Hygiene: Put simply, the body clock seems to have lost control of rhythms in CFS/ME which interferes with a deep sleep pattern. As a result sleep is restless and not refreshed. Establishing a wind down routine, regular retiring and rising times and relaxation strategies to use overnight on waking are essential. Ensuring the right environment for sleep is also encouraged.
- Pacing: There is reduced energy capacity in CFS/ME although the full mechanisms are yet to be understood. Therefore structuring the day is important to allow gain more control over the condition. The aim is to lessen the ‘boom and bust pattern’ where a lot of activity happens on a good day and leads to a bad day where very little can be achieved. Understanding the components of activity is also helpful:
- Physical: lifting, standing or walking.
- Cognitive: processing information, reading or socialising.
- Emotional: managing a stressful event or a difficult phone call.
Pacing is a way of establishing the correct balance of activity and rest, to conserve energy and establish safe, sustainable levels. It takes time and practice, as restricting activity requires discipline and assertiveness.
- Effective rest and Relaxation: ‘Healing rest’ will require a person to be quiet and still both physically and mentally. It includes avoiding sleeping during the day. Distraction techniques are also useful but should be assessed for their use of energy.
- Grading activity: Is a term that describes a safe return to activities by building up in manageable stages. As symptoms are understood and managed by pacing, progress is possible to reach set goals such as reading, socialising and for some exercise.
- Memory/concentration advice: As a result of sleep not being refreshed, memory, concentration and word-finding difficulties are a common feature of CFS/ME. This is often called ‘brain fog’. Consider mental activity in the same way as physical activities:
- Work out a baseline
- Rest often
- Set alarms and reminders
- Write post it notes and a diary.
- Making changes: Thinking and acting differently is difficult. For the condition to stabilise, saying no to people and adjusting the degree of looking after others’ needs may require delegation, reviewing prioritises, assertiveness. Doing less may be uncomfortable to start with and involves dealing with the loss that may result in role, work, place in the family or friendship group. However, it is an important factor in improving symptoms.
- Acceptance: It takes courage to face what is happening as a result of the condition. Working with the reality of your circumstances and symptoms takes time. It is not giving up, looking to learn how to experience well-being, in spite of the illness. It is about gaining more control. However, it is not an easy process. Acknowledging the grief process of denial, anger, bargaining, depression, as a reaction to all that has changed, is the first step. There can be a whirlwind of emotions, maybe all in the same day. Working through this realisation can start to bring an understanding of your current reality, reducing the energy spent on fighting CFS/ME and finding peace.
‘Acceptance is one of the best things, it has helped me loads. I fought against it for a year and got defeated. When I accepted, it was a weight lifted. My family are on side, they accepted before I did. It’s great finally getting bits back slowly.’
- Goal setting: A frequently used approach in health care management relates to successfully setting and achieving personal goals. It may be the introduction of an activity or building in a new experience.
- Specific: Have a clear idea of what is being aimed for
- Measurable: To monitor in relation to energy use and being able to break down the goal into steps
- Achievable: Not setting standard too high
- Realistic: Given symptoms and commitments.
- Time related: to track progress, modify and ensure success.
A achieving such steps improves self-esteem and confidence with the added, benefit and a of feeling a sense of purpose is returning.
- Cognitive Behavioural Therapy (CBT) A talking therapy that explores thoughts and emotions and their impact on actions or behaviours. The approach is recommended for CFS/ME and the skills are employed at the service in a tailored approach and as one of several aspects to the one to one sessions.
- Managing Setbacks/Relapse: CFS/ME can be difficult to predict and symptoms can change over time. Learning to manage fluctuating patterns by identifying triggers leads to sustainable improvement. During this process there are likely to be setbacks to learn from which your therapist will support you through; ultimately and they can help to prevent future relapse. Causes can include
- physical activity/exercise above manageable levels on one or several occasions
- mental overwork and stress
- another illness such as an infection or virus, trauma or surgery, emotional stress or life events, change to medication
Once the reasons for a setback are recognised, it is possible to become stable by stepping back again. Acknowledging the demands you may have placed on yourself perhaps with no other option available at that time, or others expectations and other factors that contributed. The message being not to fear moving forward gently once you are able to.
- Increased stability requires the building of resilience, or a greater capacity to recover more quickly from difficulties and setbacks. Resilience is associated with developing supportive relationships and accepting help. It is becoming realistic about plans and commitments, own strengths and abilities and being flexible. Resilience is also about managing emotions to stay stable and enjoy a good quality of life. Types of resilience include
- Physical resilience
- Managing your appointment: Patients cant use the central booking system to change their appointment and must ring us directly.We can only allow two cancelations maximum due to the size of the service and in line with hospital policy.
Information for supporters
CFS impacts greatly on close relationships and you play a vital role in supporting your loved one as they manage the symptoms and effects of CFS/ME
- Understand the condition and it’s management
- Become involved in their therapy by reading information and attending consultations to which supporters are invited
- You can offer practical help with activities and emotional support with stressful events and frustration
You provide valuable insight but it can be very difficult to know how to help at times. It is common at times for supporters to feel they are losing their loved one, worry about coping and have concerns about the future
What do you need as a patient?
- Support. Are there friends or relatives who can keep you going?
- Don’t lose your social contacts. They are important for your well being
- Address your physical and emotional health needs with activities you enjoy, rest and healthy eating
- Make time for yourself
- Consider local groups designed to provide help for others in your position
- Maintain contact with your GP or practice nurse