Impact of myalgic encephalomyelitis on treatment of comorbidities: a lived experience, by Denise Lopez-Majano in Work vol. 66, no. 2, pp. 309-313, 20 Jul 2020 [DOI: 10.3233/WOR-203175]
Myalgic Encephalomyelitis (ME) is a complex, chronic, disabling, multi-system disease with no FDA-approved treatments.
ME greatly impacts quality of life (QoL) with studies showing that people with ME often have worse quality of life than people with sickle cell anemia and cystic fibrosis, among other chronic diseases.
People with ME frequently have comorbidities, which, if treated, could improve quality of life. However, the pervasive impact of ME makes treatment of comorbidities difficult. When trying to treat comorbidities it is therefore important for rehabilitation specialists to understand the impact of ME on day-to-day life in order to avoid treatment-related harms or exacerbation of ME symptoms.
This article details the lived experience of one family in which both siblings have ME and comorbidities.
6 Recommendations based on our experiences
Because ME impacts every moment of the lives of people with ME, rehabilitation specialists (physical therapists, occupational therapists, etc.) must do the following in order to help people with ME:
understand PEM, hypersensitivities, reduced cognitive and physical resources, unrefreshing sleep, and pervasive exhaustion
streamline therapy for people with ME
reduce frequency/appointment duration/intensity of treatment but also expect treatment to take much longer than usual
be mindful that if the person with ME does not have a caregiver to help convey things, progress may be even slower due to the dual effort of communication and therapy
anticipate periods of time during which people with ME cannot attend appointments because of physical and cognitive limitations
ensure people with ME are not penalized for missed appointments
know that because of limited cognitive and physical resources it may be necessary to repeat exercises/activities and rephrase instructions to ensure they are accurately learned
keep in mind that each person with ME has different limits and these may also vary from one moment/hour/day to the next
know that when it comes to exertion, the person with ME must be the one to determine each time if exertion is in any way feasible
understand that assessment and treatment of comorbidities in people with ME requires flexibility on the part of rehabilitation specialists.
To ensure the greatest chance of successful treatment of comorbidities in people with ME, rehabilitation specialists must be cognizant of the impact of ME on cognitive and physical function and must individualize treatment modalities in order to accommodate persons with ME. Careful adaptation of treatment modalities will increase the possibility of successful treatment of comorbidities in people with ME.