From the ME Association website –
Relationship between physiotherapists
and people with M.E. is poor but there is potential to improve
By Karen Leslie, Natalie
Hilliard, Michelle Bull, and Nicola Clague-Baker.
We are a group of
physiotherapists from across the UK with a special interest in M.E.
In July we set a poll on the MEAssociation website asking about your experiences with physiotherapy.
We wanted to understand the
perception of our profession and examine the effectiveness of treatment for
people with M.E.
Thank you to everyone who completed
the survey and to those who took the time to contact us directly with your
Experience of physiotherapy
A total of 441 people answered
the poll, and of those 232 (53%) had experienced physiotherapy.
Of those who had physiotherapy,
36% found it to be a positive experience, but over half (54%) had a negative
The positive stories described
physiotherapists who would work in partnership with their patients, open to
learning about the disease and taking the time to listen and adapt treatment
depending on how the symptoms were responding.
The negative stories highlighted
a lack of professionalism that was really shocking and disappointing to read.
Effectiveness of physiotherapy
In terms of the effectiveness of
physiotherapy, only 11% of respondents reported that their symptoms improved,
whereas a worrying 53% reported that physiotherapy made their M.E. symptoms
Even within those who reported a
positive experience of physiotherapy, 70% said it still didn’t make their M.E.
From the personal stories we
received via email, Twitter and Facebook, we were able to build a sense of the
kinds of treatment people with M.E. were receiving.
Various forms of exercise were
described, as well as manual treatments like joint mobilisations and massage.
Some people received
physiotherapy as a direct intervention to their M.E. symptoms, whereas others
encountered physiotherapists for secondary problems such as joint pain.
What struck us most was there was
no single treatment highlighted as either detrimental or effective. For
example, some people responded very well to massage and found it gave them pain
relief, but others reacted poorly and experienced more pain.
While any mention of graded
exercise was included in a negative account, some people reported benefits from
various low-level activities like core stability work.
This really showed how every
person with M.E. is unique and that any treatment plan must be specific to the
individual, not a standardised approach.
One of our favourite anecdotes
was someone whose entire encounter with a physiotherapist involved them
changing the configuration of their pillows. Although fleeting, this one act
allowed the person to sleep more comfortably, which had a really positive
impact on their quality of life.
It is these small but effective
management strategies that we feel physiotherapists can excel at, and we should
be exploring more for this patient group.
Overall the results suggest the
general relationship between physiotherapists and people with M.E. is poor but
indicates there is potential to improve.
Physiotherapy may not be a
“treatment” for this disease, but therapists could use their skills to provide
management solutions that can have a benefit to quality of life.
This data will help to provide
background to our group’s work as we start the task of engaging with
physiotherapists with the aim to raise awareness of the issues around
physiotherapy treatment for people with M.E.
We have really appreciated the
input from the M.E. community so far and the warm welcome we have received. You
have even helped us to choose and design our logo through Twitter and Facebook
We cannot provide medical advice
as we are a virtual group, but we can signpost to useful resources for you or
your therapist. Or you are welcome to share your experiences of physiotherapy
Please feel free to contact us