On Saturday 6 Feb 2021, Physios for ME had the pleasure of (virtually) meeting “Long Covid Physio”, a global peer support and advocacy group for physiotherapists and support workers living with Long Covid.
Long Covid Physio was founded in November 2020 by Darren Brown, a physiotherapist who shared his own story of Long Covid with us back in October. The primary reason for Long Covid Physio forming was peer support for physiotherapists and support workers who were struggling with Long Covid, in particular the symptoms associated with Post Viral Fatigue Syndrome. For many it was a steep learning curve to realise that the typical rehabilitative approach of graded exercise was not going to help them, and could result in episodic disability.
It wasn’t long before Long Covid Physio became more actively involved in education and advocacy, helping to raise awareness about the precautions needed when considering exercise for Long Covid patients who were demonstrating post exertional malaise.
Long Covid Physio now have their own website and are producing a series of fascinating podcasts covering a range of topics. Their progress and output has been outstanding and they have several sizeable projects underway that will really make a difference to Long Covid care and the awareness of post viral complications.
During our meeting we discussed the major similarities between Long Covid and ME, but we also all recognised there were significant differences too. We agreed that Long Covid Physio would be taking the lead in the education and advocacy for Long Covid, with our two groups collaborating whenever needed and providing each other with support.
As for Physios for ME, we will now be setting our sights on the new NICE Guidelines for ME/CFS, which are due to be published in April 2021, and we have our own research study to get underway when lockdown restrictions allow.
While we are saddened at the circumstances that brought the members of Long Covid Physio together, we are also thrilled to see a new group of physiotherapists who understand the issues and have the drive and determination to make a difference to our profession’s clinical practice.
There is still a lot of work to be done, both for ME and Long Covid, but the number of proactive and passionate people becoming involved is ever-growing and we hope to see some real change this year.