The author of this article is a co-founder of the chronic illness campaign group discussed.
A protest is taking place on Wednesday 8 March at parliament. It is for people living with myalgic encephalomyelitis (ME) – a chronic systemic neuroimmune disease not dissimilar to long Covid. You can read more about ME and its symptoms here. Medical professionals generally claim there is no known cure for ME. However, currently there are also some high-profile cases of the NHS severely neglecting seriously ill people living with ME. Worse still, three people have already died in recent months. So, with fear and anger among the ME community growing, a campaign group is taking action. We need your support with it.
The Chronic Collaboration
Myself and my chronically ill and disabled partner Nicola Jeffery launched the Chronic Collaboration in 2021. It’s a campaign group – check out its Twitter here. As we stated on Twitter, it aims to be:
A new resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equality.
It’s early days yet. But through lived experience of chronic illness and learned approaches from other types of activism, we aim to change the way our community fights for its rights. First in our sights was the National Institute for Clinical Excellence (NICE) delaying the new guidelines on ME.
In September 2021 we held a protest outside its HQ. NICE eventually backed down, and published the guidelines. They are by no-means perfect – but it was a better result than it could have been. Since then, Nicola has had a prolonged period of severe ill health. However, recent events in the ME and chronic illness communities compelled us to act again.
Sami and Alice: severe ME
As I previously reported, Sami Berry is currently dying in an NHS hospital. She lives with severe ME, as well as Ehlers-Danlos syndrome (EDS) and epilepsy. Campaign group ME Action UK said:
Sami is very concerned she is going into intestinal failure as severe ME and EDS has made her body unable to digest nutrients even through a feeding tube. NHS doctors are refusing to provide her with drugs that previously helped her regain nutritional levels, or refer her to a specialist. She is vomiting repeatedly, and cannot even keep 4ml down. It has been 26 days [at the time of writing] without food. Her blood sugar levels are dangerously low. Sami and her family are requesting that the hospital transfer her care to specialists who understand how to treat severe ME and EDS.
At the time of writing (Thursday 2 March), I was told that the hospital Sami was at had tried a percutaneous endoscopic jejunostomy (PEJ): a feeding tube inserted directly into the small intestine. However, this had reportedly not worked properly and Sami was still struggling. Her husband Craig said:
I am slowly watching my wife die in front of my eyes. The doctors at the hospital are refusing to provide her with drugs that previously helped her regain nutritional levels… Her consultant has said that he will not necessarily take the advice of the specialists
Sadly, Sami is not the only one in this awful situation. As the Times reported:
Alice Barrett, 25, has severe myalgic encephalomyelitis (ME) and is being cared for by Royal Devon University Healthcare NHS Foundation Trust.
Her father, Mark, said that doctors were ignoring advice from family and ME experts on how best to treat her. “Alice will die. And we haven’t got much time at all,” he warned.
Barrett is being treated at the same hospital as Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill, who died of ME two years ago.
Barrett needs to be fed via a tube, and the hospital has said it is NHS policy that she must be inclined at 30 degrees for this to happen. However, her family say her condition means she cannot tolerate being anything other than horizontal.
On Wednesday 1 March, I was told the hospital had reportedly agreed to tube-feed Alice at an angle of five degrees. It was unclear at the time of publication whether this had worked. There is a petition in relation to Alice’s situation you can sign here.
Sami and Alice both being in life-threatening conditions in the NHS at the same time is bad enough. However, their stories emerged against a backdrop of three people with ME having died since Christmas 2022: Anna Fitzgerald-Clark, Kara Jane Spencer, and Sarah Louise Mclure.
Three demands for ME
All these women’s stories point to systemic failings within the NHS, which you can read more about here. For example, as I previously wrote, the new NICE guidelines say:
doctors should refer patients to ME specialist teams. While these do exist in England, they are all varied. Some are led by psychologists like Surrey and Hull; others like the Yorkshire Fatigue Clinic involve immunologists. Moreover, others like in Suffolk have been stopped. So, the idea that people can see specialists is a postcode lottery.
With people dying, others seriously ill in hospital, and anecdotal reports of the NICE guidelines not being properly followed – as a person with ME, and as the carer of that person, Nicola and I cannot stand by and do nothing. So, the Chronic Collaboration will mobilise again:
The @TheChronicColab is holding an emergency demo at parliament on 8 March. Too many people with severe ME are dying. The NHS fails many more. Politicians must act NOW before anyone else comes to harm & before #LongCovid patients are next please support #MEAwarenessHour #NEISvoid pic.twitter.com/sO59OjPMGR
— Steve Topple (@MrTopple) March 1, 2023
We’ll meet at Old Palace Yard at 12:30pm on 8 March with three demands. At 1pm we’ll hand them to parliament, to be given to the All Party Parliamentary Group (APPG) on ME and the health and social care select committee. Then, at 1:30pm, we’ll walk to the Department for Health and Social Care (DHSC) and hand our three demands in there, too. These three demands aim to address the underlying issues with NHS care and support for people living with ME. They are:
We’ll be using #DontLetMEDie on the day. Moreover, what I wrote about the Chronic Collaboration’s NICE protest in September 2021 also applies to its 8 March demo:
people living with ME and other chronic illnesses often can’t protest in person. If you can’t attend, and someone can’t attend on your behalf, we still want to see you there. Email a picture of yourself to hello(at)thechroniccollaboration.com and we’ll make sure… [parliament] sees your face.
The community needs allies. This is why we want as many people to support this as possible: from NHS workers to other chronically ill and disabled people via non-disabled campaign groups, MPs, and well-wishers. Chronic illness doesn’t discriminate (even if the system does). With the emergence of long Covid, more and more people are affected. It could be you next – or someone you know and love.
For this to be effective, it’s crucial that there’s a large social media presence also. We’re asking people to use the three demands poster above and tweet @NHSEngland @DHSHgovuk @gmcuk using #DontLetMEDie (note the capitalisation, it’s crucial) – saying why these organisations need to act. People need to do this from 12:30pm on 8 March. We’ll also be livestreaming the protest on the Chronic Collaboration’s Twitter.
#DontLetMEDie
It might seem inexplicable to some that, after NICE’s new guidelines, the NHS would still dangerously neglect people living with ME. However, that is the reality – and from where I’m viewing it, the situation actually seems to have worsened. There needs to be targeted action to bring this to the attention of people who may make change: politicians, civil servants and government. The community needs to look to those that can fight and allies that can support it. So, join us in person or online on Wednesday 8 March. We owe it to each other.
Featured image via the Chronic Collaboration
