It is hard to believe that we are celebrating five years as a team. The last 12 months saw some huge successes in our education and research projects. Here’s a look back over what we’ve done in our fifth year.
Our Book
Our book, "A Physiotherapist's Guide to Understanding and Managing ME/CFS", was published in August 2023. We’ve had a great response so far from people with ME and physiotherapists, with some reporting it has helped them to adapt their practice for their ME patients, which is exactly what we hoped to achieve.
Here is a selection of comments received:
“This is an exceptional resource that steers away from cookbook recipes and instead focuses on principles for safe and effective physiotherapy.”
“It's very refreshing reading something well researched and informative about ME/CFS.”
“This has helped me appreciate how there are no specific guidelines and everything is patient specific.”
“A game changer for anyone who has ME.”
“Best compilation of references I've seen for over 30 years.”
“As someone with Long covid and MECFS, literally everything I would want a physio (or pretty much any healthcare professional) to know.”
We were also thrilled to find out that a German publisher has purchased translation rights, and hope to share more information about this version once it has been produced.
Research
This has been the biggest year for us in terms of research.
We had two pieces of work published in peer reviewed journals:
Data collection was completed and analysis is currently underway for:
And we launched a second survey about vagus nerve stimulation, aiming to build on information gained in the first. Analysis of the survey is underway and we hope to share an overview soon.
In April we secured funding through the Chartered Society of Physiotherapy Charitable Trust Physiotherapy Research Foundation Award for a new feasibility study on transcutaneous auricular vagus nerve stimulation. The study will be a mixed methods feasibility randomised controlled trial. We want to establish the acceptability, adherence, recruitment and retention rates, sample size and outcome measures, in order to inform a larger study. We’ll also aim to understand the experience of using taVNS and evaluate its safety for people with ME.
At the moment we are going through ethics applications so are not yet ready to start recruitment, so please do not contact us about participation until we provide more information about what the study will involve and who we will be looking for. The study will be run through the University of Liverpool and testing is carried out at participant’s homes, so recruitment will be restricted to the North West.
It’s taken several years and several rejections before we finally secured funding for this project – a special mention to our research lead Dr Nicola Clague-Baker for her tireless work in getting this through.
One-page handout
This year we produced a one-page handout, “How to work safely with people who have ME.”
The handout is aimed at physiotherapists who might see someone with ME for an unrelated reason, such as an injury to the muscle or joint, or recovery from surgery. While the physio does not work in ME services, their standard treatments might not be suitable for someone with ME, so they still need a basic level of awareness about ME to be able to adapt their treatment.
We created a draft of the one-sheet and asked for feedback, which helped to inform the final design. We then reached out for help in translating the document so it could be used world-wide, and were overwhelmed with the offers of help. We are so grateful to everyone for their help and support in making this possible, and hope it becomes a useful resource for people with ME to take to physiotherapy appointments.
Advocacy and education
Our team have shared key messages in presentations and interviews for a wide range of audiences. You can see an overview of all our work here.
Over the last 12 months we have been involved in presentations or interviews with:
The Royal College of Physicians of Edinburgh
Department of Health & Social Care Delivery Plan working group (Research)
Norwegian ME Association
CSP Annual Conference (England)
Physio Update (an independent physiotherapy magazine)
Hope 4 ME & Fibro Northern Ireland
David Tuller
“Discussions at Dawn”
We continued to work with the DHSC Delivery Plan as members of two of the working groups, and we provided our recommendations during their review process. We were also pleased to meet with the senior policy manager for neurological conditions in the Scottish Government to discuss plans for physiotherapy management for ME.
Coming up in next 12 months
Our research projects will certainly keep us busy, with plenty to write-up and submit for presentation and publication, as well as our newest trial on vagus nerve stimulation which will start recruitment later this year.
We would also like to focus on the challenge of how to increase our educational reach. While we have had an increase in engagement from physiotherapists this year, we sadly continue to receive stories from people with ME reporting negative experiences with physiotherapists, and ongoing inappropriate clinical practice. Our work is far from over, but this only makes us more determined.
As always, we thank all the clinicians and researchers who have supported us, and most importantly the ME community, whose resilience is astounding and who we continue to learn so much from.