Celebrating our 12 month anniversary
It's hard to believe that we've only been running for one year, but today sees the anniversary of our first ever meeting as an official group.
To celebrate our birthday we thought we'd recap on what we've achieved in the last 12 months.
Our first official meeting formally establishing ‘Physios For ME’ – a diverse team indeed! Find out more about us here.
We attended our first CMRC Medical Education Group meeting, chaired by Dr Nina Muirhead
We attended our 1st ‘Forward ME’ meeting at the House of Lords! Here are Michelle and Natalie trying not to be too excited...
We wanted to understand more clearly about the experiences of people with ME, so we set up a survey on the ME Association website asking people about their experiences of Physiotherapy. The results of that survey can be read here
We used social media to gather information from people with ME about physiotherapy treatments that helped them. There were clear distinctions between severity of disease and treatment approach
We finalised our logo, with an online vote!
274 followers on twitter, 80 follows on facebook
We registered as NICE stakeholders for the ME/CFS NICE guidelines review
We met with the Chartered Society of Physiotherapy Director of Practice and Development Directorate and a Professional advisor to highlight our concerns around physiotherapy treatment for people with ME and the lack of education
They offered to support us with our University survey (looking at undergraduate physiotherapy education for ME) by sending out the finalised survey to all universities on our behalf
They also encouraged us to put together a symposium for the CSP annual conference for 2020, which kept us busy for the next few months
Along with the ME Association, we met with the ‘we are undefeatable’ Sport England campaign leaders to highlight the issue with their campaign for people with ME. They were very receptive and made a few changes to their campaign.
Our survey was sent to all UK Universities asking if they included ME in their undergraduate physiotherapy programme
Our very own Associate Professor of Physiotherapy, Nikki, taught her students at the University of Leicester a new ME module with the latest available biomedical evidence
We submitted our selection of appropriate evidence to NICE for their ME/CFS guideline review
We challenged an article written about pacing and offered to work with the authors. Unfortunately our offer was not accepted
We submitted our symposium proposal to the Chartered Society of Physiotherapy in the hope of presenting at the CSP 2020 conference. Unfortunately we were not successful but we were offered to submit our proposal to the Society of Research in Rehabilitation Conference!
A quiet month on the outside, but we began discussing as a team some ideas around areas of research we would like to pursue
Our website went ‘live’ and continues to develop
A busy month with changes in work circumstances thanks to the new pandemic, but we continued to engage on Twitter and Facebook and we continued to answer emails and facebook messages
We began to see how Covid-19 could open up opportunities to educate our profession about Post Viral Fatigue Syndrome, and in turn about ME
We challenged the online presence of an Oxford NHS "Fatigue" leaflet, gathering signatures from many ME advocates in support, and were pleased to see the removal of the leaflet from the website (and as yet have had no direct reply!)
We were asked to contribute to the World Confederation of Physiotherapists Rehabilitation Guidelines post-covid
We kept challenging poor advice in relation to post Covid care. We even wrote to Professor Whitty about his comment ‘exercise is good for everyone’! No reply yet though...
We met (virtually) with the Chartered Society of Physiotherapy about the importance of Physios recognising signs of PVFS and ME post covid. This opened up several opportunities in the coming months...
We announced that we had funding approved for our first research study!! It is being funded by the MEA Ramsay Fund. Due to the pandemic we will be delayed in starting this work, but we are so excited to have this opportunity
Our online presence was growing, with 7,500 website hits; 1229 twitter followers; 1247 facebook page likes and our top Facebook post reaching 14.8K people with 2.4K engagements
We had a double-page spread published in "Frontline", the the monthly magazine sent to approximately 59,000 members of the Chartered Society of Physiotherapy in the UK. We discussed the importance of recognising post viral fatigue syndrome in post-Covid patients, and then included information about ME
We ventured into new ways of delivering our message and recorded our first podcast with Charles Shepherd as special guest. We have plenty of ideas for further podcasts so watch this space.
We delivered a Webinar hosted by the Chartered Society of Physiotherapy, "A Spotlight on Fatigue". We invited Charles Shepherd to join us and discussed our position on ME and physiotherapy, as well as provided guidance on recognising symptoms of post viral fatigue syndrome and management advice. There were just over 200 physiotherapists watching live, and the recording will be made available soon. We'll share it as soon as we can
We refreshed our website section on resources for physios, and within a 4 week period we had 2,816 visits to the website., and our Covid-related information reached over 6 thousand people on Facebook.
We started work on an article in collaboration with The Workwell Foundation. Stay tuned for more information on that...
The next 12 months
We have lots of aims for the next 12 months. Our plans include;
Complete an application to be a Foundation Charitable Incorporated Organisation. This would allow us to raise funds and start to expand our reach, in terms of published materials and exhibiting at conferences
Get our research study underway - and perhaps set up a few more!
Film more podcasts with guest speakers covering a wide range of topics
Add to and expand on the resources available on our website
We'd like to extend our thanks to all the professionals, charities, researchers and organisations that we have made links with over the last 12 months. Their help and support has been integral to our ongoing success.
We'd especially like to thank people with ME, for engaging with us, teaching us and supporting our projects. We hope we can continue to build our momentum and bring about real change.