A quest to manage CYP with ME/CFS and [LC] under one MDT service – evaluation of a regional centre for CYP ME/CFS and [LC] services, Anbu et al, 2024

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

 

MDT, one doctor?

 

Wow, are people really talking in acronyms these days? CYT? MDT? No idea what those are.

 

This has come up as a problem when lobbying for services.
Some people consider "multidisciplinary teams" to mean medical consultants from different specialties so they lobby for that but it very often seems to mean people from different allied health professions.

 

I am familiar.


I was thinking how they’re trying to get people on board for saving their sinking service with the promise of one doctor.

Such a pathetic offer.
But, tbf, usually for the likes of us MDT means any old discipline but doctoring.

 

I also agree @Dolphin, people not knowing what stuff means irl is a huge disadvantage to us, one of the biggest.

I believe that putting a glossary together for such things would be a good way to get everyone up to speed more quickly but also help us all out even where we are familiar a reminder summary to help us, our cognitive impairment, to keep up more easily.

 

It would be interesting to know feedback as to whether this is a good service or BPS heavy?

I’m guessing it is Alder Hey from looking up the authors?

I’ve noticed the mean length of symptoms criteria they noted had 42months for me/cfs vs 10.7 fir LC

I don’t know whether that is due to them being diagnosed and referred faster , it having been done early on in pandemic for that 10.7 will become 42 in time OR whether there are different prognosis situations for those diagnosed with LC

and that’s important because if those they diagnose the way they diagnose it with LC have a high % recovering within the year vs me/cfs there are worries if they get melded for research and one day they have a team who think the difference between those who recover and don’t isn’t the illness given all the cliches with bad treatment and not trying hard enough etc we’ve seen used in the past

it’s a question in itself because does LC become me/cfs at a set point or still get called LC or pasc because I know LC is still developing its different terms for eg 6weeks in vs 6months/1yr later and sub types that are me/cfs vs lung

 

The MEA mentioned that the Isle of Man has a combined service and is asking for patient views on social media.

If it was adequately staffed for the combined patient volume and was a medical led non BPS service this would seem sensible on the face of it? In that form would be an upgrade to the non medical fig leaf of a service where I live.
The challenge would be to find non BPS consultants to run it.

 

If you read the BACME reports for 2019 and 2023, https://bacme.info/library/surveys/Surveys & Research Archives - BACME
the biggest complaint of these MDT clinics (alongside Struggling to get funding – or respect from clinical colleagues) is lack of medical input, particularly for diagnosis. The strong impression giveis that the teams want more medical, input, ask for it, but it isn’t provided by their hospitals

 

I have heard that the Liverpool CYP service is pretty much BPS. There were only 5 responses from there in the MEAction UK report for NICE gdl development.
https://www.meaction.net/wp-content...-ME-services-Survey-report-by-MEAction-UK.pdf P52
one response indicated neither better nor worse, the other 4 were much worse.

My contact is very involved with a nearby support group, in an area where children are referred to Liverpool.
Theo Anbu was not one of the 3 Committee members who resigned before publishing:
They were:

Michael Beadsworth a consultant in infectious diseases and clinical director specialist in academic medicine at Royal Liverpool University Hospital, and clinical lead for ME/CFS regional service

Gabrielle Murphy clinical lead of the fatigue service at the Royal Free London NHS Foundation Trust

Joanne Bond-Kendall senior physiotherapist at the specialist paediatric ME/CFS service at the Royal United Hospitals Bath NHS Trust