Staff need to be led by the patient and their needs … Good listening skills are an absolute requisite for working with ME / CFS patients , plus the imagination to grasp the enormity of the condition and the huge number of losses that can result from having such a condition .”
severity of symptoms and disability , and that it was important that this was recognised by clinics and therapists .
Being believed and not judged was also reiterated and valued , particularly listening to individuals and meeting them where they are . Once an understanding has been agreed , this could then be used to direct service delivery for that individual , for example considering the time taken to comprehend new information .
Another individual stated : ‘ Staff need to be led by the patient and their needs . Each patient is different and their individual needs must be acknowledged and heard . Good listening skills are an absolute requisite for working with ME / CFS patients , plus the imagination to grasp the enormity of the condition and the huge number of losses that can result from having such a condition .’
They concluded : ‘ The ability to problem solve is vital , along with the willingness to meet patients where they are on any given occasion . Relapses are common and there is no room anywhere for a “ blame the patient ” attitude . Judgement should be left at the door .’
Other factors that were also valued in feedback included physical understanding of the condition , access through home visits , telephone and televisual options , communication skills – particularly active listening and validation of the condition and advocating on behalf of the patient – and honesty and psychological support .
This information may also be useful for provision for services for those more severely affected by Long Covid .
Carruthers BM et al ( 2003 ) Myalgic Encephalomyelitis / Chronic Fatigue Syndrome , Journal of Chronic Fatigue Syndrome , 11 ( 1 ): 7-115 . DOI : https :// doi . org / 10.1300 / J092v11n01 _ 02 . Collin SM and Crawley E ( 2017 ) Specialist treatment of chronic fatigue syndrome / ME : a cohort study among adult patients in England , BMC Health Services Research , 17 ( 1 ): 488 . DOI : https :// doi . org / 10.1186 / s12913-017-2437-3 .
Johnston S et al ( 2013 ) The prevalence of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis : a meta-analysis , Clinical Epidemiology , 5 : 105-110 . DOI : https :// doi . org / 10.2147 / CLEP . S39876 .
McDermott C et al ( 2014 ) What is the current NHS service provision for patients severely affected by Chronic Fatigue Syndrome / Myalgic Encephalomyelitis ? A national scoping exercise , BMJ Open , 4 ( 6 ), p . e005083 . DOI : https :// doi . org / 10.1136 / bmjopen-2014-005083 .
NICE ( 2021 ) Myalgic encephalomyelitis ( or encephalopathy )/ chronic fatigue syndrome : diagnosis and management .
Pemberton S , Bradley J , McKeever V ( 2020 ) Understanding Myalgic Encephalomyelitis / Chronic Fatigue Syndrome ( ME / CFS ) and the theories behind our therapy approach . Available at : www . yorkshirefatigueclinic . co . uk / media / uploads / 2021 / 05 / 18 / theory-model-nov- 2020 _% 5b9279 % 5d-12628 . pdf [ accessed 8 November 2022 ]
28 OTnews November 2022