by Tony Britton, Fundraising and PR Manager, ME Association
Four physiotherapists who became profoundly disturbed by the way their profession was failing to help people with M.E. get better spoke directly to 59,000 colleagues in their first-ever podcast this week.
The fab four – members of the recently-formed ‘Physios for ME’ Group – were joined by ME Association medical adviser Dr Charles Shepherd as they took part in a 31-minute Zoom conference which was put on YouTube on Wednesday.
In the podcast, they each spoke of their experiences of how they had to learn on the job the right ways to help people with M.E. restore their energy levels. Standard physio treatment of supervising patients to do more exercise without harming themselves through careful graded exercise therapy just wasn't working.
To listen to the podcast, click HERE
They also spoke of their fears that the world could be seeing many more cases of M.E. as people who had suffered from the coronavirus failed to make full recoveries. There were many stories coming through of long-haul Covid-19 recoverers still suffering weeks later from post-viral fatigue and other fatigue-related illnesses.
Dr Shepherd said he was already hearing this from many people who had home-managed their way through Covid-19. But the ME Association was not yet hearing directly from Covid sufferers who had been in hospital intensive care and had been provided with structured follow-up.
The group introduce themselves on their website.
There’s Karen Leslie, a neurophysiotherapist, who chaired the podcast. Karen says she had worked with many complex neurological situations and always found a way to benefit patients in some aspect of their journey “until I met someone with severe ME”.
Cardiac and cancer rehab specialist Dr Michelle Bull revealed she felt embarrassed for her profession when she read accounts from people with ME who had negative experiences of physiotherapy. She started needing answers when the illness arrived in her family eight years ago.
Another neurophysiotherapist, Dr Nicola Clague-Baker, said she first learned about ME when her closest friend at university went down with it 30 years ago. “She has been amazing, learning how to cope with life and teaching herself (and me) about ME.”
And Natalie Hilliard discovered ME and the stigma attached to it three years ago when she met the person who became her best friend. Her friend now veers between severe ME and very severe ME and Natalie cares for her 24/7.
“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 people with ME down and I feel determined to do something about it.”
The podcast followed the group’s rallying call to all 59,000 members of the Chartered Society of Physiotherapy when at the beginning of this month they outlined their manifesto in the society’s monthly ‘Frontline’ magazine.
The ME Association is proud to be supporting Physios for ME in their work.
Our Ramsay Research Fund is also funding a new study – the first of its type in the UK – that will explore the feasibility of measuring physiological activity during the daily lives of people with ME/CFS. The study will be led by Dr Nicola Clague-Baker, an associate professor of physiotherapy and lecturer at the University of Leicester.
The study is titled:
“Feasibility of investigating oxygen consumption (VO2), Heart Rate, Blood Pressure, lactic acid levels and activity levels of people with ME during normal daily activities.”