Tameside M.E. patients call for fair health care for all
Tameside families affected by M.E. are hosting a community screening of Unrest, a multi award-winning film by Jennifer Brea, on 18th November, 2.30pm at The Magdalene Centre in Broadbottom.
This screening is one of many happening across the UK and the globe, as part of an international social impact campaign, Time for Unrest, which aims to increase the public’s knowledge of M.E.; challenge the stigma surrounding the condition; and to call for greater research and fair medical treatment. Patients all across the world are organising their own local events like this to widen the reach of the campaign. This event is for anyone who believes in fairness and equality.
At the heart of this local arm of the campaign are Ellissa Bryant and Ursula Humphreys, both Tameside patients whose lives have been struck down by M.E. Ellissa was an elite climbing athlete, having competed across the UK and Europe, often seen on the medals podium, and was in further education with a view to going to university. Ursula was a post-graduate with a promising career in public health policy and planning, working in a management role to protect and promote the local population’s health. The goals of both young women now are relegated simply to doing their best to manage their debilitating health condition, day-to-day.
The film Unrest tells the global story about an international community of patients with a serious, life-altering illness. The film’s director, Jennifer Brea, turned the camera on herself when, at age
28, whilst studying for her PhD at Harvard and just months before her wedding, she contracted a mysterious fever, leaving her bedridden, yet was disbelieved by doctors. Her intimate film offers a first-hand glimpse into the hidden world of millions of people suffering invisibly and left at the margins of medicine and science – people like Ellissa and Ursula.
“When I got sick, I was shocked to encounter this world I had never heard of and knew nothing about. For decades, people living with M.E. have been missing from their lives. It’s my hope that in telling this story, we will no longer be relegated to the shadows, that our experience will be seen and recognised.” – Jennifer Brea, Director of Unrest
“The daily suffering that I go through can not be understood simply by description – it has to be seen to be believed, recognised and acknowledged. That’s why this film is so important.” – Ellissa Bryant, Tameside M.E. patient
Myalgic Encephalomyelitis (M.E.) is a systemic neuroimmune condition, causing dysregulation of both the immune system and the nervous system. In many parts of the world, it is commonly known as Chronic Fatigue Syndrome. The effects of M.E. are devastating enough to leave 25% of patients housebound or bedbound. 75% of people with M.E. are unable to work.
In spite of the profound individual and social impact of the disease, the NHS has largely ignored the surmounting medical evidence that demonstrates the physiological causes of the symptoms of M.E., instead focusing on therapies that wrongly treat the condition on a psychological basis. This has perpetuated much of the stigma and misunderstanding of M.E., and caused great damage to the 250,000 people in the UK that have the condition. There are currently no approved drug treatments and research investment has been scarce.
Unrest shows the profound consequences of this neglect by our public health, medical and research systems on patients and their families, who are left impoverished, often without any support to confront a life-changing illness.
“My illness has pulled my life from under my feet, literally. It’s stripped away almost all of the things that make me who I am. The lack of awareness about my symptoms meant that I was ill for so long without medical understanding or support from all those around me. My own profession has let me down. Unrest has given me the confidence to say that this is not ok, not for me or anyone else with this condition.” – Ursula Humphreys, Tameside M.E. patient
Unrest also speaks to patients’ incredible resilience and the global social movement they are building to finally end the stigma; and inspires elected officials and policy-makers to think about how they can be stronger allies and support a better future for all.
This Tameside-based event aims to support the campaign by beginning a dialogue locally between patients, the public, clinicians and decision makers. All are invited to work with the event organisers to build the momentum of radical change.
“Community screenings are a critical part of building the movement to get M.E. the recognition and resources it so badly needs. It will take local communities discussing this disease to change the stigma, spread the word, and create the impetus for concrete change in our lifetime.”- Laurie Jones, Global Director of Impact for Time for Unrest
It is hoped that this local conversation can spread across the health economy of Greater Manchester – which is the first city-region in the country to receive a £6billion devolution deal
from government for an integrated healthcare system – and begin to reverse NHS cuts that were made to M.E. services. Patients in eight out of the ten Local Authority areas in Greater Manchester have no access to NHS M.E. community nursing and specialist physiotherapy, which is essential for condition management; clinically informed self-care and rehabilitation; and to achieve optimal functioning in the absence of drug treatments. Tameside has fortunately retained this invaluable NHS service.
The debate about equal access to health care and fair medical treatment for M.E. is also to take place in Westminster shortly before Tameside’s community event, whereby Jennifer Brea herself will be holding a parliamentary screening of Unrest for MP’s. Speaking recently on ITV News, Jennifer said:
“The reality is that we haven’t had enough investment in research and in science and patients are often left on their own to try different treatments to see what helps. We’re asking Parliament to invest more in research, because that’s what we really need to get the best treatments for patients.” – Jennifer Brea, Director of Unrest
Tameside’s community screening therefore is so crucial to give a voice to patients at local level, so that they can also be part of this national – and indeed global – conversation to bring fairness and equality to their lives. Only by having their very serious health condition acknowledged and invested in – in a manner that is at least comparable to other severely disabling diseases – can this be achieved.
To learn more about the film and campaign visit timeforunrest.org or, on social media, post using #timeforunrest
You can watch a trailer of the film here: http://unrest.film/trailer
Tameside’s community screening will be held at The Magdalene Centre, Mottram Road, Broadbottom, SK14 6BB, on Saturday 18th November 2017 at 2.30pm, followed by Q&A session.
This is a free event but please contact the organisers to reserve your seat.
Email firstname.lastname@example.org or Tel. 01457 764 813
Tameside M.E. patients call for fair health care for all