Yet another year has passed and Physios for ME is now celebrating four years as a team. The last 12 months have been busy with a focus on educational materials and research. We’ve had some big successes, a few disappointments, and an ever-expanding to-do list as our ambitions grow.
Here’s a look back over what we’ve been doing this year.
Our Book
This year we completed our book "A Physiotherapist's Guide to Understanding and Managing ME/CFS" and submitted the manuscript to the publishers. We have been working with their copy-editors and proof-readers to make final changes, and are on the final countdown for the book’s publication in August – only two months to go!!
We are hopeful that this book will provide a thorough, evidence-based reference guide for all physiotherapists, allowing them to understand more about ME and how to adapt their practice to work safely with people with ME. The book is aimed at physiotherapists in any speciality, whether they are looking at the management of ME symptoms or a completely unrelated matter – either way, we must consider the impact of our interventions.
More information about publication dates and how to order a copy will be coming soon.
Research
The last 12 months has seen us very busy with write-ups and submissions of the various research projects we’ve been leading.
We were thrilled that our very first journal article was accepted for publication this year. "An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome" was published by Work as open access in April 2023, and can be read here.
We have now submitted a write-up of our feasibility study looking at physiological measurements of people with ME during daily activities and are in the process of working through revisions – fingers crossed we’ll have news on this very soon.
Write-up is nearly complete of our vagus nerve stimulation survey , which we will be submitting for publication very soon, and write-ups continue following in-depth interviews exploring heart rate monitoring and vagus nerve stimulation in people with ME.
Our lead researcher Dr Nicola Clague-Baker has been very busy this year, completing recruitment and data collection for a new pilot study that aims “to identify the feasibility for a definitive study that will investigate the effectiveness of pacing with a heart rate monitor for people with Myalgic Encephalomyelitis and long COVID”. The next step on this project is data analysis.
Unfortunately we have had three unsuccessful funding applications for a proposed study into transcutaneous vagus nerve stimulation. We really feel this is an area that needs more research for people with ME, so will continue to pursue funding opportunities.
Government working groups
In 2022 the Department of Health and Social Care set up working groups to develop proposed content for a draft cross-government delivery plan on ME/CFS. We were very keen to be involved, and are pleased to be represented on two of the working groups.
Dr Nicola Clague-Baker is part of the research working group, and has attended regular meetings regarding research priorities.
Dr Michelle Bull is part of the “Living with ME/CFS” group, and has so far taken part in two workshops on the provision of health services for children and adults with ME/CFS, and supporting children and young people workshop.
We look forward to seeing the progress of these groups in the coming months.
Website
This year we have updated pages on our website, bringing in more resources and information that we have learned while writing our book.
And for World ME Day, we added a new page focusing on post exertional malaise (PEM)
Our website is always evolving and if there are any specific areas that would be helpful to add, please feel free to share your ideas.
Presentations
Our team have presented to many different groups, sharing key messages and our research findings. Over the last 12 months we have presented to:
North West England ME professionals
Northumbria University physiotherapy students
IACFS/ME Conference
The Perrin Technique conference (discussing our physiological testing research)
Presenting to a national team of “Physical Activity Clinical Champions” on “when it is not appropriate to exercise”
Coming up in the next 12 months
This August will see the publication of our book, which will fill a much-needed gap in current educational materials for physiotherapists.
We will be presenting posters of our research at the Chartered Society of Physiotherapy conference later this year, which is a great opportunity to reach out to all of our peers.
One of our next major projects will be to provide training opportunities for physiotherapists, which we hope to begin work on soon.
And we will continue to carry out, write-up, and submit research to further our understanding of ME in relation to physiotherapy assessment and management.
As always, we thank all the clinicians and researchers who have supported us, and most importantly the ME community who we continue to learn from every day.
Here’s to year five of Physios for ME!