Physios for ME celebrate our seventh anniversary
- PhysiosforME
- 31 minutes ago
- 3 min read
It is seven years since the formation of Physios for ME, and at what has now become an annual event, this weekend all four of us got together in person to reflect on our progress so far, catch up on all our ongoing projects and make plans for the next twelve months.
We all get on so well together, despite some eclectic interests. For example, this year we have or will be going to see:
- Matthew Bourne’s Swan Lake
- Starlight Express
- ABBA Voyage
- Silence of the Lambs stage-show
Can you guess who’s seeing what?!
Our Book
Our book, “A Physiotherapist’s Guide to Understanding and Managing ME/CFS”, is still available in English and in German. We continue to hear from people with ME and physiotherapists who have found the book really informative and helpful.
Research
We have continued to work on our range of original research projects, including:
A feasibility study of pacing with a heart rate monitor for people with ME and Long Covid was published in a peer reviewed journal – you can read it here.
A feasibility study on transcutaneous auricular vagus nerve stimulation for people with ME has completed quantitative and qualitative data collection and is now in the analysis phase, as part of Karen’s PhD.
We ran surveys and interviews on experiences with hyperbaric oxygen therapy, experiences of healthcare professionals living with ME or Long Covid (with post-exertional malaise), and high level/semi-professional athletes with ME or Long Covid (with post-exertional malaise). Data is being analysed for these by Masters students, with presentations and articles in the pipeline.
Through her role at the University of Liverpool, Nikki continues to supervise a number of fantastic Masters students working on projects around the use of portable metabolic testing, including reliability, comparison to maximal cardiopulmonary exercise testing, effect of diet, and effect of time of day.
Nikki presented our work to the newly established group PRIME, a four‑year programme funded by the Medical Research Council and led by Chris Ponting.
We were sadly unsuccessful with a research funding application for a major project in partnership with other key ME researchers but are going to submit to another provider very soon.
Advocacy
In May we were thrilled to have an article published in the Chartered Society of Physiotherapy's magazine "Frontline", which went out to all chartered physiotherapists in the UK (that's over 67,000!) The article was called "Do no harm: supporting people with ME/CFS. How can physiotherapists provide effective therapies while ensuring patients with this debilitating condition feel safe and supported?"
We had a great response to this article and it was a highlight of our achievements this year. We will be continuing our work with the CSP going forwards.
Presentations
Nikki has continued to teach the next generation of physiotherapists about ME at the University of Liverpool, Sheffield Hallam University and Northumbria University.
Karen has shared her research with other PhD students and researchers at the University of Liverpool, making sure to add in lots of information about ME in the process.
Michelle presented to an ME support group about “The Science of Energy in ME”.
Plans for the next twelve months
In October we have several abstracts accepted to present at the Chartered Society of Physiotherapy Conference. Karen and Nikki will be heading to Glasgow to share our work and hopefully reach even more physiotherapists.
During our annual get-together we worked on our communications plan for the next twelve months, including producing more regular blog posts covering a wider range of topics, and making sure our website is up to date. You should be hearing more from us whether you like it or not!
We also spent our anniversary weekend drafting a major new survey about people with ME’s experiences of physiotherapy, which we will be launching soon. We’re really excited about this project and think it will help us develop our focus for the future.
Here’s to year eight!