Nightsong
Senior Member (Voting Rights)
A quest to manage CYP with ME/CFS and long covid under one MDT service – evaluation of a regional centre for CYP ME/CFS and long covid services
Abstract
Objectives Long Covid (LC) is a debilitating condition seen both in adults and CYP since COVID-19 pandemic.1 The similarities between LC and ME/CFS have been well-established.2 Our centre has a well-established MDT service for CYP with ME/CFS since 2008. With this experience our LC service was established and managed by our ME/CFS MDT team since March 2021. However, there is uncertainty on the future of this LC service due to challenges with ongoing funding. This study was undertaken to understand and advice if LC services could be resourcefully managed within the existing ME/CFS services in future.
Methods The demographic and phenotypic data were retrospectively collected from medical notes, clinic letters, Meditech records documented at initial appointment to the respective clinics. All new patients who had a diagnosis of ME/CFS and LC and seen in the respective clinics between 01/04/21 and 31/03/22 were included in this study.
Results In total, 27 patients from the ME/CFS and 27 patients from LC services were included. The mean age was 12.7 years (ME/CFS) and 13.7 years (LC). Girls were more likely to be affected as 88.9% (ME/CFS) and 70.4% (LC). 29.6% of ME/CFS patients and 14.8% of LC patients were in the most deprived decile; Majority were White/White British with 63.0% (ME/CFS) and 88.9% (LC) patients. The mean duration of symptoms were 42.4 months (ME/CFS) and 10.9 months (LC) patients. Only 25.9% (ME/CFS) and 33.3% (LC) patients were in full time education. 81.5% of the ME/CFS and 63.0% of the LC patients had been experiencing mood changes. LC patients were seen with a mean of 5 weeks and ME/CFS with a mean of 12.2 weeks from referral.
Fatigue affected 96.3% of the ME/CFS patients and 92.6% of the long COVID patients, along with other symptoms such as headache, cognitive abnormalities, musculoskeletal pain, abdominal pain and sleep disturbance (figure 1). The patients were seen on average by the therapies team within 10.1 weeks (ME/CFS) and the 4.7 weeks (LC) patients after their first clinical appointment. Both groups received a similar number of sessions from their respective therapies team, a mean of 3.1 (ME/CFS) and 4.1 (LC) sessions.
Conclusion This study highlights many similarities between ME/CFS and LC in their presentation. This establishes that it would be valuable to merge both the services and manage patients under the same MDT. As in our service this MDT could consist of a consultant, nurse specialist, occupational therapist, physiotherapist and a psychologist, along with ready access to other medical and surgical specialties as needed. To achieve our quest NHS England and RCPCH should promote in standardizing care and attempt to reduce inequalities in both these groups as there are only 8 dedicated CYP services for ME/CFS3 as compared to the LC services in England.
Archives of Disease in Childhood | Link
Abstract
Objectives Long Covid (LC) is a debilitating condition seen both in adults and CYP since COVID-19 pandemic.1 The similarities between LC and ME/CFS have been well-established.2 Our centre has a well-established MDT service for CYP with ME/CFS since 2008. With this experience our LC service was established and managed by our ME/CFS MDT team since March 2021. However, there is uncertainty on the future of this LC service due to challenges with ongoing funding. This study was undertaken to understand and advice if LC services could be resourcefully managed within the existing ME/CFS services in future.
Methods The demographic and phenotypic data were retrospectively collected from medical notes, clinic letters, Meditech records documented at initial appointment to the respective clinics. All new patients who had a diagnosis of ME/CFS and LC and seen in the respective clinics between 01/04/21 and 31/03/22 were included in this study.
Results In total, 27 patients from the ME/CFS and 27 patients from LC services were included. The mean age was 12.7 years (ME/CFS) and 13.7 years (LC). Girls were more likely to be affected as 88.9% (ME/CFS) and 70.4% (LC). 29.6% of ME/CFS patients and 14.8% of LC patients were in the most deprived decile; Majority were White/White British with 63.0% (ME/CFS) and 88.9% (LC) patients. The mean duration of symptoms were 42.4 months (ME/CFS) and 10.9 months (LC) patients. Only 25.9% (ME/CFS) and 33.3% (LC) patients were in full time education. 81.5% of the ME/CFS and 63.0% of the LC patients had been experiencing mood changes. LC patients were seen with a mean of 5 weeks and ME/CFS with a mean of 12.2 weeks from referral.
Fatigue affected 96.3% of the ME/CFS patients and 92.6% of the long COVID patients, along with other symptoms such as headache, cognitive abnormalities, musculoskeletal pain, abdominal pain and sleep disturbance (figure 1). The patients were seen on average by the therapies team within 10.1 weeks (ME/CFS) and the 4.7 weeks (LC) patients after their first clinical appointment. Both groups received a similar number of sessions from their respective therapies team, a mean of 3.1 (ME/CFS) and 4.1 (LC) sessions.
Conclusion This study highlights many similarities between ME/CFS and LC in their presentation. This establishes that it would be valuable to merge both the services and manage patients under the same MDT. As in our service this MDT could consist of a consultant, nurse specialist, occupational therapist, physiotherapist and a psychologist, along with ready access to other medical and surgical specialties as needed. To achieve our quest NHS England and RCPCH should promote in standardizing care and attempt to reduce inequalities in both these groups as there are only 8 dedicated CYP services for ME/CFS3 as compared to the LC services in England.
Archives of Disease in Childhood | Link
