Advocacy
Raising awareness and challenging misinformation
2024
We were co-signatories on a letter about a product that was alluded to have "cured" someone with ME. The letter was mentioned across mainstream newspapers and succeeded in the BBC adding disclaimers to the episode
2021
We met with a research team to outline our concerns about a proposed exercise trial for Long Covid patients
We write a response to a piece in the Guardian promoting exercise as a treatment for Long Covid
2020
We contact the authors of a pacing review to highlight key differences in pacing approaches for people with ME compared to other conditions
We challenge a blog post by the University of Wolverhampton citing exercise as a key treatment for Long Covid, and receive a published response
We worked with Forward ME, an advocacy group comprising charities and clinicians, to produce a letter promoting safer approaches to patients post-Covid, which could be used to challenge any service advocating a purely exercise-based approach
We contributed to a letter addressing a leaflet by the Oxford Health NHS Trust titled "Coronavirus and Fatigue”, which contained many inaccuracies and potentially harmful information. The leaflet was since withdrawn
2019
We became aware of a campaign encouraging exercise for anyone with chronic conditions, and met with the team to highlight this does not apply for people with ME. The campaign were keen to listen and since added clauses to their material to exclude ME and Long Covid
Meeting with the CSP
One of our first actions after forming Physios for ME was to meet with the Chartered Society of Physiotherapy. We met with the 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 in turn supported us with our survey of universities to find out how many include ME in their physiotherapy programs, and encouraged us to be challenging of our profession - advice we most certainly took to heart!