NICE update 2021 a bit depressing:
- Therapy based on physical exercise should NOT be offered “as a cure”, nor should graded exercise programmes (which by definition use fixed increments in exercise) be used!
- Instead, self management, flexible and tailored
- CBT should only be offered to manage symptoms, improve functioning and reduce distress.
- Talks about “energy management” – includes emotional, social, cognitive.
- “Care and support plan” – physical activity including mobility but also activities of daily living. Plan periods of rest and activity, and incorporate the need for pre-emptive rest. Management of relapses and flares.
Main thrust of update is that CFS/ME is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated. It affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity. It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity over a day, week or longer.
Often it profoundly affects different aspects of the lives of both people with ME/CFS and their families/carers including social life, emotional wellbeing and education.
Another big theme is prejudice, disbelief and stigma experienced by patients.
US IOM expert panel have rejected the name “chronic fatigue syndrome”, as patients hate it! Myalgic encephalitis (ME) also rejected on basis of insufficient evidence that this is the pathological process. They suggest “Systemic exertion intolerance”, which is probably even more rubbish, in my opinion.
Diagnostic criteria: all of the following 3 [BMJ 2015; 350]
Substantial reduction/impairment in pre-illness levels of activity, that persists for more than six months [NICE 2007 says 3/12 for children], and accompanied by fatigue (often profound, new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest)
Worsening of symptoms after any type of exertion (including cognitive and emotional stress) – “post-exertional malaise“
Unrefreshing sleep, and/or sleep disturbance.
In addition, should have at least one of:
- Cognitive impairment
Doesn’t mention chronic pain?! NICE says reconsider diagnosis in absence of cognitive difficulties or chronic pain.
Evidence (reproducible) implicating certain infections as a trigger. Co-existing mood disorder in substantial proportion of patients, sometimes sleep-wake disorder – likely to perpetuate/exacerbate.
Brain imaging has identified alternations suggesting that it is a brain problem.
- FBC, LFTs
- Coeliac disease screening
NOT microbiology unless indicated: borrelia, HIV, Hepatitis viruses, EBV, CMV, toxoplasmosis
Cochrane review of graded exercise therapy – may benefit sleep, physical function, self-perceived general health, and no evidence that it worsens outcomes. Curiously, no evidence for loss of aerobic fitness! Perhaps graded exercise tackles a hyper-reactive CNS response to exercise-related physiological signals. Note that fear of physical activity becomes conditioned when it commonly exacerbates symptoms.
Warn that exercise programmes can make things worse rather than better. Exercise should only be done as part of supervised programme, with physiotherapist – don’t just tell them to go the gym more! Start below baseline activity level.
Relaxation techniques recommended by NICE.
CBT – should only be offered to manage symptoms, improve functioning and reduce distress. Again, not a “cure”. Analysis of both CBT and graded exercise suggests that benefit comes from reducing inactivity.
Sleep hygiene important. Include rest periods in plan but avoid day time naps, especially since sleep doesn’t usually help anyway!
Many people find exclusion diets useful, esp bowel symptoms, not recommended but involve dietician if attempted anyway.
Equipment to maintain independence can improve quality of life and should be part of overall management.
Beware boom-bust! Many patients over do it when they have a period of relative wellness. Flares and relapses are to be expected. Trigger? New medical problem? Adjust plan as necessary.
Pain and orthostatic intolerance are big issues for some people.
Severe CFS can increase risk of pressure ulcers, DVT, vitamin D deficiency and contractures.
Important to be honest at time of diagnosis. More optimistic in young people. Most adults improve, some are able to return to usual activities but others experience long term symptoms or relapse.
PACE trial aimed for less than full restoration of health as “recovery”, future trials should use clinically relevant improvement and patient self-perception.
2010 Scottish Good Practice statement needs update.