“I am delighted to have received this grant from the ME Association and look forward to working with the team, with people with ME/CFS, and with clinicians to co-produce a clinical assessment toolkit.
“The tools will promote patient-centred care by helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.”
Professor Sarah Tyson, University of Manchester
The study will also consider whether the toolkit can be applied to people with Long Covid who might be referred to combined NHS ME/CFS and Long Covid specialist services – such as in the Isle of Man – or to NHS Long Covid Clinics – such as in England.
The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services.
The researchers undertook extensive work in preparation of the grant application. Using recent national guidance, they established the concepts to be measured and completed scoping reviews to identify any existing measurement tools. While these revealed that nothing suitable currently existed for ME/CFS several were found that could be developed.
The implementation of effective PROMs in other medical conditions has shown an improved understanding of patient problems, better monitoring, more effective decision-making, and improved communication. To achieve this, PROMs need to be carefully developed to ensure the content covers the full range of symptoms and disabilities, are easy to use, and produce accurate and useful information.
The toolkit will address the assessment needs and research recommendations (for a core outcomes database) identified in the 2021 NICE Clinical Guideline on ME/CFS. It will be produced following consultation with patients and with clinicians to ensure the toolkit can record accurate and reliable data. Then it will be made available to the network of services in England and in Northern Ireland, Scotland, and Wales, when new specialist services are commissioned.
The main outcome from this research will be a clinical toolkit and a greater understanding of patient difficulties, their needs, and satisfaction with service provision, along with a better appreciation of the assessment challenges that clinicians working in specialist services face and how they might be overcome.
Application of the toolkit will be of benefit to patients, to clinicians who are tasked with providing tailored care and support, and to healthcare commissioners who want to review and improve existing service provision – or create new services – that adopts the NICE Guideline recommendations.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
