Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is characterised by debilitating fatigue and comprises a range of symptoms that can include, malaise, headaches, sleep disturbances, difficulties with memory, concentration and muscle pain. There are many different potential aetiologies but the diverse nature of the symptoms cannot yet be fully explained.
Overall, evidence suggests a population prevalence of at least 0.2 – 0.4%. Approximately half of these people will need input from specialist services. ME/CFS can cause profound, prolonged illness and disability. A substantial number of sufferers are bedridden, housebound or wheelchair dependent. This has considerable impact on the quality of life of people with ME/CFS and their carers.
Referral to the CFS/ME service for patients with a new or existing diagnosis of Chronic Fatigue Syndrome is via the Referral Management Centre. The necessary bloods require completing before the service will accept the referral.
Diagnostic criteria for CFS
Debilitating persistent or relapsing fatigue for at least four months, not life-long.
- Not the result of ongoing exertion and not substantially alleviated by rest.
- Severe enough to cause substantial reductions in previous levels of occupation, educational, social or personal activities.
- At least four of the following symptoms persisted or recurred during 4 or more consecutive months of illness and did not predate the fatigue: Impaired memory or concentration; Sore throat; Tender lymph nodes (symptom); Muscle pain; Pain in several joints without swelling or redness; Headache; Unrefreshing sleep; Feeling ill after exertion
- No clinical evidence or cause for the fatigue: 1) Organ failure (e.g. Emphysema, Cirrhosis, cardiac Chronic renal failure); 2) Chronic infections; 3) Rheumatic and chronic inflammatory diseases; 4) major neurological diseases; 5) Systemic treatment for neoplasms; 6)Untreated endocrine diseases; 7) primary sleep disorders; 8) Obesity (BMI>40); 9) Alcohol/ substance abuse; 10)Reversible causes of fatigue such as medications, infections or recent major surgery; 11) Psychiatric conditions (e.g. melancholic depression, bipolar disorder, Psychoses, eating disorder)
- Routine investigations do not suggest a cause for fatigue: FBC, ESR, U&E, LFT’S, Calcium, Phosphate, Random glucose, Thyroid function, coeliac serology (Endomysial abs or TG), urinalysis, serum creatinine.
The team focuses upon the management and support for those previously diagnosed with Chronic Fatigue Syndrome. The main aims of the service are to optimise supported self-management.
Throughout the Central Lancashire Moving Well Service, our partnerships with support groups, volun-teers, and third sector organisations are key to establishing our self-management network.
Top things for GPs to know about Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis
- CFS/ME is a neurological disorder.
- Sleeping more does not help patients recover quicker and can exacerbate symptoms.
- Diagnosis of CFS/ME is by a process of elimination by having undergone all necessary blood tests and investigations to rule out all other causes of fatigue. There is not a diagnostic tool/ test available. The patient has had to have had symptoms of debilitating fatigue for more than 4 months.
- Prescribing exercise is dangerous to a patient with CFS/ME. Even going out for a short walk.
- Medication including painkillers can exacerbate symptoms as the immune system is sensitive. Amitriptyline 20mg has had positive affect on patients with CFS/ME at night as assist in reducing muscular discomfort and aiding sleep.
- The treatment and recovery for CFS/ME is long term, intervention is normally up to 1 year.
- The intervention includes life style and routine changes including graded activity, CBT and Occupational Therapy intervention. Patients have to be motivated and disciplined to engage with therapy.
- CFS/ME is four time more common in women than men.
- Patients with CFS/ME are motivated and want to conduct activity but are physically unable to. They are not usually depressed.
To refer into the Central Lancashire Moving Well CFS/ME service the following must have been completed and considered;
- All bloods to have been completed recently.
- All red flags eliminated.
- Fatigue to have been experienced for more than 4 months.
- A diagnosis of CFS/ME has been made.
- The patient is willing to engage with therapy and make life style modifications.