Who we are
We are a group of physiotherapists based in the UK who have recognised the issues of physiotherapy for people with ME.
Our aims are:
- to educate and inform physiotherapists about ME and appropriate management strategies
- to support people with ME to feel confident in seeking physiotherapy treatment
- to support physiotherapists treating people with ME in providing safe and appropriate treatment
- to further explore treatment options through research and discussion in order to better understand what does and doesn't work for this patient group
We are a virtual group who work together in our spare time. You can find out more about each of us below.
I specialise in neurology, which means I work with patients who have disorders or damage to their brains, spinal cords and nervous systems. I’ve worked with very complex neurological presentations and have always found a way to benefit my patients in some aspect of their journey. Until I met
someone with severe ME.
I started to unravel the complexities of ME as a condition and was astounded at the extent to which it can disable someone. When I unpicked current physiotherapy provision and saw the accounts of people with ME, I was horrified of the general impression of my profession and the potential harm we could be causing. Physiotherapists are designed to help people, but it felt like here was an entire patient group with a devastating disease who we were failing.
Through Twitter and networking I joined together with this group of like-minded physiotherapists. We all bring different backgrounds and experiences and are learning so much from each other, as well as from the patient population. I’m really excited to see what changes we can make to how physiotherapists work with people with ME.
Dr Nicola Clague-Baker
I have been a physio for nearly 30 years, the last 25 years specialising in neurological physio (like Karen). When I was at uni, my closest friend developed ME. She has been fighting it for the last 30 years and I have felt so helpless. Geographically we don’t live close so all I can do is offer my love and support whenever I see her and keep in regular contact.
She has been amazing, learning how to cope with life and teaching herself (and me) about ME. She has had very little support from the medical professions and has had to fight for any social support. She is so strong and I know I would not have been as strong if the situation was reversed.
A few years ago I went on a course about fatigue and among many treatments suggested they also talked about GET. I discussed this with my friend and she said that she didn’t find it useful, luckily she didn’t find it harmful. Only recently have I discovered the true harm of GET from listening to people with ME on twitter and reading the more recent research. This has motivated me to read ‘the purple book’ and many other research studies. Twitter has also been instrumental in finding Karen, Michelle and Nat. Thank you twitter.
I feel that you can ‘teach old dogs new tricks’ and they can teach others. As an Associate Professor in physiotherapy at the University of Leicester my plan is to teach my physio students about the biomedical evidence for ME and we can explore how we can help all people with ME. I would also like to develop research to discover the best ways to support my friend and all people with ME. I hope one day that there is a cure but along the way physios should be able to improve the lives of people with ME.
My experience of ME came about 3 years ago, when I met my best friend. She has severe ME and I began to experience life as it was for her. I saw her daily struggles of pain, sickness, fatigue and the whole gammet of symptoms that pwME face. I learnt that ME is no friend and that it is unlike any other condition I had come across in my Physiotherapy career. Despite the difficulties, my friend continues to inspire me. I am currently caring for her 24/7 as she is in a severe relapse but she continues to fight this devastating illness.
Over the last 3 years, I started to learn about the stigma attached to ME and I experienced first hand how professionals interacted with my friend. I saw how demoralising it could be for her. A CBT therapist asked her "tell me again why you can't get up in the morning". I gained insight into the issues with the NICE guidelines and learnt from my friend that any additional 'exercise' would exacerbate her symptoms. I learnt that gentle massage or myofascial release helped with pain or migraines and that any activity needed to be managed and planned to avoid a relapse. We didn't always get it right.
I started to look into Physiotherapy and ME and I didn't like what I found. I feel that as a profession, we are seriously letting pwME down and I feel determined to do something about it. There is more we can do to help, we have many skills, not just exercise!!! For example, I currently treat people in their own homes and over the last 15 years, I have treated people with all sorts of conditions and injuries, from head injury to knee replacements and I use treatments that suit each person - there is no blanket rule, everyone is different and exercise is just one of the 'tools' in our tool box and it doesn't suit everyone - especially most pwME.
The more insight I gained into the world of ME, the more I wanted to change perceptions of ME within my profession but I wasn't sure how to do it until I met Karen at the ME research conference in London in July and within one week, 'PhysiosForME' was born! Michelle and Nikki quickly came along, each bringing their own experiences, and as a small group, we have already done so much. There is a lot more to do to raise awareness in our profession but we will keep striving.
Dr Michelle Bull
My area of speciality is cardiac rehab and cancer rehab although I currently work in a transformation role in the NHS. I am passionate about the health and wellbeing benefits of physical activity and how being active can help people manage their long-term conditions, get back to doing the things they want to do and improve their quality of life.
However, eight years ago when ME first arrived in our family, I realised I didn’t know very much about it so went looking for information to help me better understand the condition and discovered that physical activity might not be the answer here and might actually make symptoms worse. I’ve discovered that what works for one person with ME doesn’t necessarily work for another and therefore each person needs an individualised approach to help manage their symptoms and to support them to live with ME.
As I’ve read accounts of people with ME who have had a negative experience of physiotherapy, I’ve been embarrassed for my profession. It has been particularly hard to hear accounts from parents of children with ME who are desperate for advice as to how best they can support their child. There are many ways that physiotherapy may be able to help people with ME but all too often it appears that exercise is the only treatment being offered, even when it is obviously increasing people’s symptoms often to extremes.
I’ve been able to use other physiotherapy skills to help manage living with ME: for example postural advice to help with headaches, strapping to help with hypermobile joints, massage to help with painful muscles, hot and cold therapy for sore joints and occasionally very specific exercises to help without exacerbating symptoms.
Through social media I joined together with this group of like-minded physiotherapists to try and make a difference in line with a biomedical approach so we can improve physiotherapy treatment for people with ME. We’ve all got different areas of expertise and are learning so much from ourselves as well as from people with ME themselves who have been amazingly supportive of what we hope to achieve. I’m really excited to see what changes we can make to how physiotherapists work with people with ME.