The Yorkshire Fatigue Clinic has recently evaluated its occupational therapy interventions and Joseph Bradley shares some of the common themes to emerge .
M
yalgic Encephalomyelitis / Chronic Fatigue Syndrome ( ME / CFS ) is a complex , long-term , and debilitating condition that is characterised by persistent physical and cognitive fatigue , post-exertional malaise and a variety of other symptoms related to autonomic , immunological and cognitive dysfunction ( Carruthers et al 2003 ) and is estimated to affect up to 0.76 % of the population ( Johnston et al 2013 ).
The National Institute for Health and Care Excellence ( NICE ) guidelines for ME / CFS were updated in 2021 , with shortened times from initial symptoms to diagnosis , diagnostic parameters and encouraging personalised care and condition management .
There is ongoing work looking at changes to services to implement the guidelines and improve services for people with ME / CFS . There are also increasing needs for people with similar symptoms from Long Covid .
It is estimated that around 25 % of people with ME / CFS may be classed as severe , where people are primarily confined to home , with those very severely affected confined to bed for much of the time and requiring carers for all their needs ( ME Association 2007 ).
Associated additional health risks increase in prolonged severe illness , both psychologically and physically ( NICE 2021 ).
Service evaluation
The Yorkshire Fatigue Clinic is a specialist provider of services to people with ME / CFS . It is contracted to the NHS and has historically also been open to self-funding referrals .
The clinic has offered a service to people who are severely affected by ME / CFS since being established . This involves provision of intervention in people ’ s homes and via telephone and video calling , where appropriate .
Recognition of the need for this provision and the associated extra costs of home visiting were included when tendering for an NHS contract with local Clinical Commissioning Groups and are , therefore , integrated into the contract provision .
The service for people severely affected by ME / CFS is primarily delivered by two experienced occupational therapists , with physiotherapy and dietetic input offered where necessary , and at the time of the evaluation , home visit time accounted for around 20 % of the clinical time that the service offers each week .
However , the clinic was conscious the nuances of service provision may not be reflected in the general outcomes used , as patients with severe ME / CFS may have longer-term input and may not see the improvement that other severities do .
Therefore , a service evaluation was designed by the clinical team . The clinic carried out a small survey with 17 of its patients severely affected by ME / CFS , who had all received rehabilitation intervention , about their experiences .
As there is a lack of provision for this group of people , even in areas where there are specialist services , elements were included in the survey to provide information more widely to areas that may be considering offering a service for people who are severely affected by ME / CFS .
All respondents had lived with ME / CFS for between three and 18 years – with an average of 14 years and 8 months – and all reported their disability to be between 60 % and 100 % using the ME Association Disability Rating scale , indicating high-moderate to very severely affected by ME / CFS .
Of these 17 patients , 38 % said they were very severely affected and 44 % severely affected . They all reported being at this level of severity for an average of eight years . All individuals had care from others : with 47 % from external formal carers ; 47 % from family or friends who live with them ; and 7 % from external informal carers .
26 OTnews November 2022