Welcome to #ThereForME

Building an NHS that's there for ME and Long Covid

So, this is it. Welcome to #ThereForME. Who are we? What is this new, catchy hashtag? There’s no better way to start than by sharing our story.

Our story

My name is Karen. I’m a chronic policy nerd, with a background working in the humanitarian sector. I also hold the dubious honour of having had my life completely decimated not once but twice in the past four years due to Long Covid.

Covid-19 hit me for the first time in March 2020. It turned into Long Covid, and for around two and a half years I didn’t improve at all. I experienced new waves of symptoms, leaving me unable to work for long periods and unable to live anything resembling a normal life. Like many others with Long Covid, I experienced everything from cognitive dysfunction and a painfully overactive nervous system, to flu-like symptoms triggered by over-exertion. Just as my health finally started to improve, my husband developed Long Covid too. So, little by little, I used up the energy I had regained by becoming a carer.

My husband is bedbound and can only leave bed to go to the bathroom in a wheelchair – just nine months before developing Long Covid, he was running a marathon. He has severe difficulties with his mouth and throat muscles, meaning that for more than a year he has only been able to tolerate liquid food. He is hyper-sensitive to noise, light, touch. He is unable to read, watch TV, listen to a podcast – basically, to do anything that might distract from the sheer misery of what he is living through.

I could talk endlessly about how profoundly Long Covid has affected our lives. We have been married for over five years and we have not been able to celebrate a single wedding anniversary. It has been over a year since we were last able to have a conversation. I miss his voice. I miss his laugh. There are some days when, frankly, I can barely breathe thinking about the wreckage of the life we were building together.

But over the past years I have developed a determination that, while this may be our latest bump in the road, this will not – I will not let this – be the end of our story.

Enter Emma. Emma and I met a few months ago. Like me, Emma is a carer for a partner with very severe Long Covid. She and her partner had just bought a house and were planning to adopt a child when he fell ill in October 2022 and never recovered. Similar to my husband, he is bedbound, cannot hold a conversation, and is unable to do anything that might help distract him from the loneliness and pain. He is so sensitive to light that he has been unable to see since June 2023. It’s like he is buried in his own body. Despite having grown accustomed to memories and dreams being too painful to countenance, Emma is determined that the future must look different.

In the short time Emma and I have known each other we have shared countless tears, laughs, moments of dark humour. But more than anything we’ve shared a hope that one day the hell we are living through will be a distant memory. That one day the four of us will sit around a table, share a glass of well-earned wine and drink to a better future.

Lately, as news turned to the election and the opportunity of an incoming Labour government, we began talking about what we could do about it. And so #ThereForME was born.

Data from the Long Covid and ME communities: a stark reality

A significant proportion of Long Covid patients – by one estimate, approximately half – meet the diagnostic criteria for myalgic encephalomyelitis (ME, sometimes referred to as ME/CFS – chronic fatigue syndrome). I have been diagnosed with ME, as have both of our partners (in its severest form).

Patients with ME have one of the worst qualities of life of any disease: lower than various forms of cancer, multiple sclerosis or chronic renal failure. Yet they have long been dismissed and overlooked, facing decades of inadequate care and insufficient research funding. This has shaped the care available to Long Covid patients, many of whom – ourselves included – feel let down by the NHS.

Last month I put out a survey to fellow patients with Long Covid and ME and their carers, asking them to evaluate Labour’s plan for the NHS against their experiences. The results, which echo wider research, were, to put it mildly, staggering.

Most said that the NHS hadn’t been there for them when they needed it. Not a single person who was very severely affected said that they felt supported by the NHS. Perhaps unsurprising, since there are no specialist in-patient services for severe ME in the UK, and no NHS protocol to guide hospital care for life-threatening complications. The inquest ongoing this week into the death of Maeve Boothby-O'Neill is a painful reminder.

Many have felt dismissed or disbelieved, in spite of guidelines from NICE recognising ME as a ‘complex, chronic medical condition affecting multiple body systems’ and mounting evidence documenting biological abnormalities. Both patients with ME and Long Covid told stories of how their symptoms had deteriorated during or following NHS care, including due to inappropriate advice to exercise. For some patients, experiences of seeking healthcare for Long Covid or ME have been so traumatic that they are reluctant to seek care in future.

And while the UK is a science and technology superpower, very few feel that the UK is making the most of its science and technology expertise to advance treatments. Instead, many with Long Covid feel that they are being left behind in a country that has moved on from the height of the pandemic.

Why we need an NHS that’s #ThereForME

Each story of a patient with Long Covid or ME, like ours, is an individual tragedy. Taken together, they speak to a vast loss to the UK’s society and economy. The new Labour government will face a vast array of pressing challenges in the months and years ahead. But this is an issue the UK can’t afford to ignore with a low-growth economy and record numbers out of work due to long-term illness.

A recent study found that people with Long Covid are three times more likely to give up work. Not least because there is very little meaningful help available for debilitating symptoms including (often extreme) cognitive dysfunction and the exacerbation of symptoms following any kind of exertion.

As patients and carers, we need an NHS that’s #ThereForME and Long Covid. But, truth be told, so does the new government – especially if they are serious about getting the UK economy moving again.

So what can be done about it?

Today we’re launching a policy brief outlining the results of the survey and a series of recommendations backed by 15 (yes, 15!) organisations working with and for people with ME and Long Covid. 

We’re calling for a transformation in care for people with Long Covid and ME in the UK: an NHS that’s there for them when they need it, offering safe care and access to the best that modern science can offer

We’re under no illusions. This is a long-term mission. But here are three first steps we’re calling for today:

• Commit from the top of government to an NHS that is there for people with Long Covid and ME. One easy way to put this into action is by prioritising the publication of the long-awaited cross-government delivery plan for ME/CFS. 

• Pledge at least £100 million annual funding for biomedical research. Show us that the government means business and will do everything it can to leverage the UK’s science and technology expertise to accelerate treatments.

• Commit to doing more with the tools we already have. Ensure that all NHS Trusts implement the 2021 NICE Guidelines for ME/CFS. Enable access via the NHS to technology-enabled solutions. There’s much more that can be done while we’re waiting for the science to catch up.

Our call to action

From hundreds of stories from people with Long Covid and ME, one overarching message emerges: in the midst of our heartbreak, the ruins of decimated lives, is a feeling that no one is on our side.

Our message to the new Labour government – to Wes Streeting and Prime Minister Keir Starmer – is simple: listen to us, hear how we’ve been failed, commit to doing things differently.

Come to the table. Talk to us. Get started on our three-point plan.

Let’s build an NHS that’s #ThereForME.