We celebrate our six year anniversary
- PhysiosforME
- 6 minutes ago
- 4 min read
It is now six years since the formation of Physios for ME, when four physiotherapists with a shared goal – to improve physiotherapy care for people with ME – got together online, gave ourselves a name and made a long list of goals. Our work is predominantly in our spare time, but we are gifted with links to academia through one of our team which has allowed our research projects to really flourish.
What we have achieved so far has exceeded everything we had first planned, but with each passing year our ambitions have grown. We have diverse experience and eclectic interests.
For example:
One of us is an avid player of lawn bowls
One of us attends a punk/rock festival annually
One of us has published four horror novels
One of us goes to France every year to cycle up mountains (slowly)
This weekend all four of us got together in person and we had a productive time planning, plotting and celebrating our progress over the last twelve months.
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Our book
Our book continues to receive positive reviews and this month a German language version was released via hogrefe. We are thrilled our work can reach a wider global audience.
With regards other languages, our publisher can typically only licence translation rights to another publisher or organisation, not individuals. An interested party can approach us with regards translation and we can then pass this on to our publisher.
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Research
The focus of this year has been our original research projects.
The feasibility study on transcutaneous auricular vagus nerve stimulation began recruitment in September 2024 and data collection is just about to complete. This project also marks the start of Karen’s PhD journey – good luck Karen!
Through her role at the University of Liverpool, Nikki is supervising a number of fantastic Masters students working on projects such as a survey of athletes with Long Covid and/or ME, and a survey and in-depth interviews on the experiences of people with ME and Long Covid with vagus nerve stimulation.
Michelle was invited to be a scientific advisor on the ERASE-LC trial.
Natalie was clinical advisor to a study on energy management for long covid, which was published as preprint this year.
Nikki was a co-author of a paper called "Long COVID is NOT a Functional Neurologic Disorder"
Michelle was co-author of a paper about priorities for research, education and clinical practice and policy from the Long COVID Physio International Forum
Michelle and Nikki have peer reviewed articles about ME.
Finally, the pilot study on heart rate monitoring has been analysed and written up, and we are hopeful for a publication in the near future.
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Presentations
We are often asked to deliver training or present our work, and as much as we’d love to say yes to everyone, we have limited time and resources unfortunately. However, we have been quite busy over the last twelve months! You can see links to these presentations where available over on our presentations page.
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ME CFS Long Covid: Digging Deeper, run by the Norwegian ME Association – presented on physiotherapy management for ME and Long Covid to health professionals, and then to people with ME.
Lecture on ME/CFS and Long Covid to undergraduate physiotherapy students at the University of Liverpool and University of Newcastle.
Sheffield ME and Fibromyalgia group – physiotherapy management of ME and service delivery in the NHS
Long Covid syndrome Rehabilitation: community of practice (Birmingham region) – presentation about vagus nerve stimulation for people with ME
Royal College of Physicians (Edinburgh) – presentation to over 200 delegates on ME, PEM and pacing
Workshop on management of PEM to the DHSC research working group
CSP annual conference – Heart rate monitoring for people with ME and Long Covid
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Advocacy and support
We have met with senior representatives of the Chartered Society of Physiotherapy to reiterate the importance of physiotherapists understanding how to manage people with ME safely. We will be having ongoing communication and look forward to working with them to further raise awareness.
Nikki and Michelle have continued to be members of working groups for the Department of Health and Social Care delivery plan. Our response will follow its publication, which is due imminently.
We supported the There for ME campaign to fund the plan, and we were delighted to have met with the ME Local Network UK team (MELNUK) with whom we look forward to future collaborations.
Our inbox remains busy with queries from people with ME and physiotherapists, and although we are unable to give personal medical advice or recommend private physiotherapists, we do our best to provide support or signpost resources.
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Plans for the next twelve months
Our focus will be continue to be research. In November 2025, Nikki will be presenting three projects at the Chartered Society of Physiotherapy conference – a study on lactate in healthy subjects, the outcome of interviews with people with ME who use heart rate monitoring to pace, and interviews of people with ME who have tried vagus nerve stimulation.
We also have several original projects in the pipeline, one of which may be the biggest we have ever attempted.
Let’s see what our seventh year brings!
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