Our Director Sarah Reed has been raising the profile of the treatment of people with Myalgic Encephalomyelitis (ME) within Parliament.
ME is estimated to affect 250,000 people in the UK. It is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. 75% are unable to work and 25% are housebound, yet treatments are still hampered by out of date beliefs that claim it is ‘all in the mind’.
When the National Institute of Clinical Excellence (NICE) proposed not to update their guideline for ME/cfs in July, there was uproar throughout patient organisations and charities claiming they weren’t fit for purpose, and were causing many patients to become worse by following NHS advice.
Sarah partnered with the Myalgic Encephalomyelitis Action Network (#MEAction) to help deliver their stakeholder submission to NICE. She brought her experience of working in Parliament to add political pressure to the unanimous call from patient lead organisations for NICE to urgently conduct a full review.
This comprised of securing an Early Day Motion (EDM 271) and orchestrating a lobbying campaign through the #ME Action Network where patients could demonstrate how the current guidelines let them down and urging their MP’s to sign it. This was also supported by other ME charities.
On 20th September, NICE overturned its original recommendation and made a welcome announcement (earlier than expected) to review its guideline on ME.
Tom Whipple, Science Editor for The Times wrote (25 September 2017):
“A patient revolt in collaboration with MPs and academics has led to a major review of NHS guidelines on the treatment of ME.
The National Institute for Health and Care Excellence (NICE) has been receiving strenuous lobbying to do the same, and this month pressure was increased when 30 MPs signed an early day motion urging a review.”
NB: 55 MP’s have signed the EDM at the time of writing.
The review process is expected to last two years and Sarah will continue to work alongside charities and organisations that listen to patient experience and international biomedical research.
Saje Impact is always keen to promote the many benefits of physical activity to people of all ages, and with many health conditions. However, it appears that for people with ME we need to be encouraging people to listen to their own bodies. Rest is critical, and to encourage increasing activity can do more harm than good.
Saje Impact has also been backing a project to raise awareness of ME through a film, ‘Unrest’. This is an award winning film, directed by Jennifer Brea, who was bed ridden with ME. By turning the camera on the ‘invisible’ nature of the illness, Jen exposes many of the myths and difficulties people with ME face. The film comes to cinemas in the UK on 20th October 2017 and Sarah has been collaborating with the ‘Unrest’ team to draw in parliamentary interest for it when it is shown as part of a reception in the Speaker's State Room on 24th October. (Sarah also has a cameo appearance in the film)!
A trailer from the film and details of how and where you can see it can be found here.
NB: ME is sometimes known as Chronic Fatigue Syndrome (CFS), although many patients feel this label trivialises and misrepresents their illness.