Many of the current problems experienced by the global M.E/C.F.S community are exacerbated by the many medical professionals who might recognise they have behaved appallingly to patients, quite possibly even harmed them, but are too ashamed or embarrassed to admit they got it wrong. As is said in this #StandUpForGigi video.
One medical profession that has recently acknowledged their mistakes and has taken the initiative to do better is physiotherapy, or at least, four physiotherapists have had a lightbulb moment and opted to change their profession for the better. They have formed Physios4ME online and their objective is-
We aim to educate and start conversation to stimulate new ideas in line with a biomedical approach so we can improve physiotherapy treatment for people with ME
It can’t be stressed enough that this is a fresh approach, many physiotherapists work with M.E/C.F.S patients using the NICE guidelines which are focussed on Graded Exercise Therapy and Cognitive Behavioural Therapy (neither of which work for the majority of M.E patients). Many physiotherapists do not recognise M.E/C.F.S to be a neurological condition, even though it was categorised as such by the World Health Organisation in 1969.
From day one back in May, I have been impressed by how the team of four physiotherapists is TALKING to patients. Something that the majority of medical professionals simply don’t do due to time restrictions or a lack of inclination. Physios4ME asked to hear about our experiences so they can learn and make our future experiences better. I think they may have been slightly overwhelmed by the sheer number of UK-based patients with a negative story to tell, myself included.
Fortunately for the M.E community, these physiotherapists are senior within their profession and are able to train other physiotherapists about the approach they should be taking and educate others on how existing practices are harming patients.
Physio4ME’s Nikki has said on their Facebook page
I feel that you can ‘teach old dogs new tricks’ and they can teach others. As an Associate Professor in physiotherapy at the University of Leicester my plan is to teach my physio students about the biomedical evidence for ME and we can explore how we can help all people with ME. I would also like to develop research to discover the best ways to support …. all people with ME. I hope one day that there is a cure but along the way physios should be able to improve the lives of people with ME.
Four amazing women, Nikki, Karen, Natalie, and Michelle are on a mission to bring about positive change. The M.E/C.F.S community has been visibly grateful online for their care, support, and enthusiasm to help.
What about you?
What about YOUR profession?
If you work in healthcare, education, or business, your profession needs to implement change. Currently, in 2019, M.E/C.F.S patients are being inadequately supported or harmed by your policies, procedures and lack of education about the condition.
M.E/C.F.S is a unique and complex condition that cannot be encompassed within standard disability policies. If you work in any of the three sectors named above you will not have had training on M.E./C.F.S. I know that because before I created Stripy Lightbulb CIC in Sept 2018, no comprehensive training existed worldwide.
You do not know what M.E/C.F.S is.
It’s a condition that is shrouded with misconceptions, false opinions, and stigma. Any information that has been filtered down to you is likely to be inaccurate or harmful.
Do Stripy Lightbulb CIC’s CPD accredited e-training.
Take a look and sign up today.