Very Severe ME - Hope Left Waiting
I am generally cautious about wandering too far down Memory Lane, as the present demands enough of my energy and attention. However, this month marks several anniversaries and milestones, and I’ve been taking a moment to look back. 25 years ago, I was about to start my educational psychology training during which I would encounter Shaun Tan’s ‘The Red Tree’. I could not possibly have known at that time the very profound influence this book would have on my life; nor could I have ever imagined what we would be navigating 25 years on as carers for our 19-year-old daughter with very severe Myalgic Encephalomyelitis (ME).
Our daughter has now been confined to her bed for four years and seriously unwell for five years. Whilst heartbreaking, her story is far from unique and many have suffered with very severe ME for much longer; hence the Severe ME Inquiry Report by Action for ME and the 25% ME Group published this week and the Proposed Urgent Safety and Support Measures for People with Very Severe Myalgic Encephalomyelitis submitted this week to the DHSC and NHS England by Forward ME. These both amplify the voices of people with severe and very severe ME, shining a light on systemic failures and pressing Government, the NHS and public services to take urgent, meaningful action. Tessa Munt MP Chair, All-Party Parliamentary Group on ME makes this clear in the Severe ME Inquiry Report's foreword: “those who are the most seriously ill are often the least able to access care”
Like many with very severe ME, our daughter has suffered the repeated blows of missed opportunities, dreams shelved and plans shattered. She has endured devastating illness, endless waiting and silent indifference. Despite this, in a darkened room, with muted longing and a quiet resilience, she has somehow managed to hold onto fragile hope.
Hope is distinct from always looking on the ‘bright side’, ‘keeping positive’ or pretending things are fine. Hope is the quiet, stubborn belief that her life has immense value even when systems that have repeatedly failed her act as though it does not. Hope is the decision to keep imagining a future where research is properly funded and where accessible treatments and cures might be on the horizon. In the face of broken promises, empty words and quiet apathy, this hope becomes a form of protest.
On Severe ME Day, the message of solidarity from Carolyn Leary, Chair of Forward ME, to everyone with severe and very severe ME is a much-needed red leaf: “Today, I want to say, on behalf of Forward ME and all its member organisations that we see you, we hear you.”
Prime Minister Andy Burnham recently pledged to "bring back hope". We are asking for genuine hope to be given to those most severely affected by ME - those who have endured years of neglect and systemic barriers that have left them without care or protection. Hope becomes real only when it is backed by policy, resources and accountability. For people with very severe ME, hope must be active, not symbolic. Their situation demands urgent attention and decisive action. They cannot be asked to wait any longer.