This month Physios for ME celebrate our third year anniversary. Yet again we cannot believe how much we have been able to achieve and we are so grateful to the ME community for their continued support, as well as the researchers and professionals we have made links with.
This year was particularly special as it saw the very first time all four of us were physically in the same place at the same time! Virtual working has many benefits, but it was wonderful for the team to see each other in person and get to know each other more. We found out that one of us is much taller than we appear on camera, one of us is exceedingly good at making cooked breakfasts, one of us is into an extreme sport, while another of us has got into crown-green bowling…we’ll leave it to you to work out which is which!
Here is a summary of our work over the last 12 months, and some thoughts on our future plans.
Our book
The past year has seen us focus much of our time on writing our book, “Physiotherapy Management of ME/CFS”, which we’re pleased to announce is now very nearly complete.
The book is aimed at all physiotherapists, whether they work directly in an ME service or not, because any physiotherapist in any service may work with someone who has ME and this should always be identified so that treatment plans can be adapted to avoid causing post exertional malaise.
We have presented as much information as possible from the evidence base, covering many key symptoms as well as general management principles. But we are keen to emphasise that the book is not a “treatment manual” as it is not possible to create such a rigid guide. Every person with ME should be treated individually, with their symptoms constantly monitored so that any management strategies can be constantly evaluated.
We also discovered that the evidence base is constantly shifting, with new discoveries happening in the last 12 months that have been added into the manuscript as we work. We envisage that the moment it is complete we will be starting on an updated edition!
We can’t wait to send the manuscript to our (very patient) publishers. More information and a timescale of publication will be released soon.
Research
In the last 12 months we have overseen five research projects:
We finally completed data collection for our feasibility study (which had been delayed due to the pandemic) and presented it as a poster at the ME/CFS International Conference in November 2021. The full study is being written up and will be submitted to journals soon.
We are also presenting the abstract at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis conference in July 2022.
We collaborated with patient experts to run a survey to capture information about the use of heart rate monitoring by people with ME.
A summary of results was presented as a poster at the ME/CFS International Conference in November 2021. The full study is being written up and will be submitted to journals soon.
We are also presenting the abstract at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis conference in July 2022.
The second of our patient-led surveys this year was on transcutaneous vagus nerve stimulation. This is currently being written up and will be presented as a poster in July 2022 at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis conference.
4. An international interview-based study exploring the use of pacing with heart rate monitoring by people with Myalgic Encephalomyelitis
Furthering the work from our survey, we have so far interviewed 28 people with ME about their use of heart rate monitoring for pacing. Data is still being collected and results will be analysed soon.
5. An international interview-based study exploring the use of transcutaneous vagus nerve stimulation by people with Myalgic Encephalomyelitis
Furthering the work from our survey, we have so far interviewed 8 people with ME who use vagus nerve stimulation. Data collection is ongoing, and we would like to talk to more people, particularly those who did not find any benefits. Please contact Dr Nicola Clague-Baker if you would like to be interviewed online about your experiences: nicola.baker@liverpool.ac.uk
We have been overwhelmed with the support from the ME community for all of these projects, and the knowledge and dedication of the people with ME who we collaborated with. We would be happy to help other people with ME develop their own research ideas. If you’d like to discuss this, please feel free to get in touch.
You can read more about our research on our website here
Presentations
Our team have been involved in several presentations and training sessions over the last 12 months.
July 2021
End PJ Paralysis summit: “Long Covid and activity: When is it not about deconditioning?”
September 2021
Paul Wagstaff Memorial Lecture for the Irish Society of Chartered Physiotherapists: “Long Covid and lessons learnt from other post-viral conditions such as Myalgic Encephalomyelitis/CFS”
March 2022
Later Life Training (for health and exercise professionals working with older people and frailer older people) “Long Weekend of Learning”: “Long Covid and lessons learnt from other post-viral conditions such as Myalgic Encephalomyelitis/CFS”
June 2022
Council for Allied Health Professions Research (CAHPR): North West Annual Event
Abstract submission: Feasibility of investigating oxygen consumption (VO2), Heart rate, Blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities
NICE Guidelines
The last 12 months saw the eventual publication of the new NICE Guidelines in the UK. We were pleased to have been involved in the stakeholder process, and we shared our final comments on the new guidelines here.
While there were areas we continue to question, we were pleased that the overriding message from the new guidelines was:
“Do not offer people with ME/CFS physical activity or exercise programmes that use fixed incremental increases, based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”
Whether the updated guidelines are being strictly followed by physiotherapists and specialist services is yet to be confirmed.
We would remind every physiotherapist in the UK registered under the health & care professions council that they must meet standards of proficiency to practice. With regards to the updated guidelines for ME/CFS, the standards of most note are:
Standard 1: To be able to practice safely and effectively within their scope of practice
Standard 3.3: Understanding both the need to keep skills and knowledge up to date and the importance of career-long learning
Standard 4.4: recognise that they are personally responsible for and must be able to justify their decisions
We are happy for any physiotherapist to contact us if they need resources or signposts to further learning.
All Party Parliamentary Group on ME
The All Party Parliamentary Group (APPG) met in May 2022 to launch their first report, "Rethinking ME".
In attendance were MPs from across the party political divide, people with ME, charity representatives, and Physios for ME were represented by Dr Michelle Bull.
We are very pleased to see progress on such a broad scale and hope to continue to be involved. More details on the report can be read here and we will share updates as and when we are able.
ME Awareness Slides
The annual ME awareness week is held in May and this year we completely updated our “Seven Slides for Physios” to reflect our own learning and provide more information that can be applied directly to clinical practice.
You can find the new seven slides here.
We are Undefeatable Campaign influence
We had made contact with the campaign team of “we are undefeatable” back in 2019 with concerns over their messaging about the safety of exercise for everybody, and we found them to be really receptive and willing to learn. We were pleased to see at the end of 2021 that new materials published by the campaign continued to include statements that their core message about the safety and importance of exercise should not be applied to people with ME and also Long Covid.
More information about our work on this can be read here.
Plans for the next 12 months
With the manuscript of our book drawing to completion, we will be turning most of our attention towards research opportunities.
As well as finishing off the write-ups of our current studies, we have plenty more to work on in the coming months. We already have one project related to heart rate monitoring going through ethical approval at the University of Liverpool and plan to start this in August. We will also be submitting funding applications for a proposal related to transcutaneous vagus nerve stimulation, and have many more ideas for future studies. Watch this space!
In addition, we will continue to take every opportunity to educate physiotherapists and other Allied Health Professionals about ME. We hope to completely review our website over the next 12 months and update it with more content to further our educational work.
In terms of presentations, we are already signed up to present at the End PJ Paralysis summit in July, with our presentation on “It’s not deconditioning: Long Covid and lessons learnt from other post-viral conditions such as Myalgic Encephalomyelitis/CFS”. We will also be presenting some of our research at the "International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis" conference in July. And fingers crossed as we have submitted abstracts to the World Physiotherapy Congress, which will be held in 2023.
Additionally we’re thrilled to confirm that the physiotherapy department at the University of Liverpool is now educating their second year students about post-viral conditions with a focus on Long Covid and ME. It is our hope that this is seen across other undergraduate programmes in the future.
While there have been many successes over the last three years, we feel that we are only just beginning. There is so much we want to achieve – so we look forward to recapping in another 12 months with even more news to share. Cheers!
