Degenerative cervical myelopathy (DCM) is
the world’s leading cause of spinal cord
impairment and disability, estimated to affect
2 per cent of adults. Even with surgery, the gold
standard treatment, fewer than 5 per cent of
people with this “slow-motion spinal cord
injury” will make a full recovery. Most will be
left with life-long disability, including loss of
manual dexterity and balance, chronic pain,
incontinence and even paralysis.
DCM is under-recognised, underdiagnosed
and poorly understood. People can wait 10
years or more to get the correct diagnosis. This
reduces the effectiveness of treatment, and only
around half are able to return to work.
Myelopathy.org was founded by Cambridge
University neurosurgeons Mark Kotter and Ben
Davies, to research DCM, raise awareness and
improve access to quality care. The academic
team were later joined by Iwan Sadler, a person
with DCM who frustrated by the lack of accurate
information about his condition, had formed a
Myelopathy Support Facebook group.
Myelopathy.org was registered as a charity in
2018 and now hosts an international support
community of more than 3000 individuals.
Little is known about the aetiology of DCM,
with its devastating consequences, or how best
to manage it. Degenerative arthritic changes
(“wear and tear”) in the cervical spine gradually
press on the spinal cord but there is no direct
link between their severity and symptoms. Even
mild compression may cause severe progressive
neurological decline and deteriorating quality of
life, while people with severe damage may only
discover it incidentally.
DCM needs a new generation of scientists to
tackle the fundamental questions that could
dramatically change outcomes.
Myelopathy.org, in partnership with AOSignal Boost
Spine, a non-profit organisation, has recently
completed a global consensus project, AO Spine
RECODE-DCM, to identify the top 10 research
priorities. This was hailed by Prime Minister
Boris Johnson, in recognition of “how you are
improving understanding and care of cervical ...
myelopathy, redirecting the research agenda’”.
Vital funding and support for this programme
is now needed, to turn these questions into life
changing answers: to understand how
long-term spinal cord compression causes
damage; who its effects; when to operate; the
need for rehabilitation and new treatments.
There are key educational needs, too, to raise
awareness of DCM among health professionals,
the public and service providers. People with
this condition need timely access to MRI,
diagnosis, and life-changing surgery.Want to help?
Can you answer a research priority, and help improve outcomes for 1/50 adults?
Please visit aospine.org/recode for more information.Welcome to our Signal Boost project – a weekly page for charitable
organisations to get their message out to a global audience, free of charge.
Today, a message from Myelopathy.org
Scientists urgently needed to tackle
common spinal cord disease