It’s really hard to believe, but it’s been only two years since Physios for ME was founded. The last 12 months seem to have flown by, so just like we did at our 1 year anniversary we thought we’d recap on our achievements and activities over the last year.
But first… we are delighted to use our anniversary to announce some very exciting news. We were approached by a publisher - Singing Dragon – and have signed a deal to write an academic book about ME which is specifically aimed at physiotherapists! This is a huge project, and it has been keeping us very busy this year. The aim is to have it ready for publication by next year.
We are not creating a standardised treatment manual for ME – this is impossible and inappropriate for such a complex disease. Instead, we aim to provide information about the known pathophysiology of ME and discuss how it is directly relevant to a physiotherapist’s clinical practice, with discussion of interventions that can be effective for symptom management alongside patient stories to put the theoretical knowledge into an example of lived experience.
We are really excited to create such an important text book, which will be published world-wide, and we are very thankful to Singing Dragon for the opportunity. Further updates will follow as we continue with the process.
And now, a recap of our second year:
End PJ Paralysis Global Summit
We pre-recorded a twenty minute piece with Charles Shepherd called “Post-Viral Fatigue (PVF), Post-Viral Fatigue Syndrome (PVFS) and Myalgic Encephalomyelitis (ME)” and took part in live Q&As.
London ACPIN Seminar: Fatigue
Our amazing Associate Professor Dr Nicola Clague-Baker presented an hour lecture for the London branch of “ACPIN” (Association of Chartered Physiotherapists in Neurology) titled: “Fatigue : Potential Causes, Management and Special Populations Including Post Viral Fatigue Syndrome and ME,” which was attended by over 180 physiotherapists.
Severe ME Day
The 8th August marked Severe ME Day, so we created a new section of our website specifically about Severe ME.
We led an evening session of "Wednesday Wisdom" run by the End PJ Paralysis team, where we discussed the formation of Physios for ME, information about ME, post viral fatigue syndrome, Covid rehab and management strategies.
Covid Rehabilitation letter with Forward ME
We worked with members of Forward ME to produce an open letter to raise awareness of post exertional malaise and challenge Covid rehabilitation services that delivered a blanket exercise approach.
In September we set up our Youtube Channel and posted several podcasts:
“Interview with Long Covid / Post Viral Fatigue”
“Heart Rate Monitoring” Part One (now over 4.5k views!)
“Heart Rate Monitoring” Part Two
Back to school blogs
In October we were thrilled to be able to share a series of blogs written by young people with ME, discussing their experiences and tips for managing school.
Physios for ME present “when exercise isn’t indicated but rehab is”
We took part in a free online cardio-respiratory Covid19 Update session. Our section was titled “When exercise isn’t indicated but rehab is”. Over 800 Allied Health Professionals registered on the day to watch the presentation, which was streamed live on Youtube.
NICE Guideline review
In November the National Institute for Health and Care Excellence (NICE) produced a long-awaited revision of their guidance for ME/CFS and we spent most of November and December producing a lengthy response.
The final publication date of the guidelines was supposed to be April 2021 but has now been put back to August 2021.
Ethical Approval for our study
The ongoing pandemic was delaying the recruitment for our study but in December we got an early Christmas present when we received ethical approval.
Presentation to Physiotherapy Students
We took part in an online presentation to physiotherapy students about Long Covid. Over 400 students attended on the evening, and there was some brilliant feedback via social media.
World Physio Congress
We presented two posters at the World Physiotherapy Congress, which gave us an excellent platform to spread our messages about ME worldwide.
Long Covid – what we have learnt so far
Our fantastic Natalie Hilliard presented to the South East division of ACPIN on “Long Covid – What We Have Learned So Far”
We were finally able to start recruitment for our feasibility study and were absolutely overwhelmed when we put out a request for participants and exceeded our target by 50% in just 4 hours!
Data collection is now well under way and we’re so grateful to everyone who is volunteering to take part. Keep your eyes peeled for further updates as we go.
World Physiotherapy Briefing Paper: Long COVID
In June the World Physiotherapy Briefing Paper for safe rehabilitation from Long COVID was published. Physiotherapy experts from around the world were asked to contribute, including Dr Bull and Dr Clague-Baker from our team. We were really pleased to be involved and help spread the word about recognising the importance of screening for PEM before attempting exercise-based rehabilitation.
Long COVID clinical experience
Our fabulous Natalie Hilliard and Dr Michelle Bull have been working in clinical practice and using their knowledge about ME to help support people with Long COVID and train NHS staff in the best management techniques.
ME Journal Club
We launched a monthly ME Journal Club, with the chance to discuss key papers as professionals and see how they are reflected in the lived experience of people with ME.
The next year
Our two major projects for the next 12 months involve writing our book (we still get very excited whenever we use those words!) and completing our feasibility study. We also hope to apply to be a Foundation Charitable Incorporated Organisation so that we can start to raise funds for future research projects.
The last two years have taken us further than we ever thought possible, and we are forever grateful to the support from the ME community, charities, professionals and advocates who have worked with us along the way. Here’s to Year Three!