Dobbin and Goodburn: A Tale of Two Cities
#DearAndy - A Letter to Andy Burnham
“It was the best of times, it was the worst of times.” I’m sure you receive many letters and calls for help, but I thought instead of one as dry as toast you could put your feet up at Number 10, put on a brew, and open an enclosed tub of twiglets. Then we could discuss Dickens and Victorian maximalist parallelism in relation to GB sports heroes Archie Goodburn and Beth Dobbin. As we both studied English, you travelled south to study at Cambridge, I went north to Manchester, I hope this will be a cosy chat.
Isn’t this the best opening line by Dickens in 'A Tale of Two Cities'? It struck me though that having ME and Long Covid, which I do, on the more severe end like Beth, is more like the worst of times and unfortunately with none of the best. Even twiglets are off the menu as they provoke the histamine equivalent of a Victorian hysteric melodrama. But what Dickens’s line does so beautifully is illuminate contrast, and it is a contrast I wanted to bring your attention to. Not to discuss Goodburn vs Dobbin but Goodburn and Dobbin - so both can experience the best of times.
I couldn’t help but admire how swiftly and wholeheartedly you reacted to Archie Goodburn’s story. How he is advocating for brain cancer and represented Scotland in the Commonwealth Games is heroic and deeply admirable. His plea on BBC Breakfast was so poignant and direct. Having had several people close to me die from brain cancer, I’m sincerely thankful that you listened and immediately promised:
National clinical lead
Immediate expert review.
National action plan.
Faster medicines regulation.
Improved access to clinical trials.
International brain tumour research conference in 2027.
As a student of English, I thought you would recognise that this is the fairy tale narrative that we love, that of the hero archetype, of someone willing to battle the dragon for others and receive the treasure.
Yet we are also talking contrast, and I want to talk about Beth Dobbin, the Olympic sprinter, who also went from the best of times to the worst of times. Beth went from being an Olympic sprinter to spending 22 hours a day in bed with severe ME from Covid and/or glandular fever.
She reached out to you this week via letter after her BBC Sport interview. But unlike Archie, I’m not even sure you saw her heartfelt plea. She received a rather slippery, soggy, standard response from the DHSC that was as effective as Thames Water mixed with Liz Truss’s lettuce.
I couldn’t help but compare these two responses and wonder why the difference? Both received BBC coverage, both are GB athletes, both have suffered terribly. Yet, one is a man, one is a woman, one is able (thank goodness) to function, one cannot, one had a heroic, recognised disease, one has a disease so riddled with stigma that there are no plans for NHS care pathway and no treatment. See Beth’s response to the DHSC here (and at bottom on page).
I can’t imagine any other serious, life-limiting and yes, ME can be a life-threatening disease to have no NHS-commissioned care for the most severely affected and no treatment, be it dementia, Parkinson’s, cancer, MS - yet that is the case for severe ME and Long Covid.
The situation is so bad that folk don’t believe it or turn away. It’s hard to contemplate, but the Victorian medical experience for people with ME and Long Covid has not gone away.
Maybe a foray into Victorian literature would help? It is full of the classic trope of the invalid, the sickbed, the hysteric: Beth in Little Women, Helen in Jane Eyre, Laura in The Woman in White and the unnamed character in The Yellow Wallpaper. There is even Florence Nightingale in real life who spent the last decades of her life in bed after Crimean Fever, with what is speculated was ME. Many of these women’s illnesses were interpreted through the interaction of emotions, morality, gender and appropriate behaviour - in other words hysteria.
We now see that the hysteria label these women (and men) had to contend often with as out-of-date and a little foolish. Yet, in 1970 two psychiatrists decided that ME was “mass hysteria” and a psychological explanation for ME has haunted us like the Ghost of Christmas Past ever since - with those in power to enact change never having learnt that lesson, with dire consequences for patients.
Things did not only get better in the 1980s with ME as they were prescribed exercise by psychiatrists, which is deeply harmful and dangerous medicine for those with PEM, worthy of a Victorian hysterical doctor gold medal. Even the week before Beth’s national plea, we had George Monbiot writing in The Guardian a heartfelt rallying cry for a public inquiry into the mistreatment of people with ME.
All of this is amplified by the national emergency of vast numbers getting Long Covid, many of whom meet the diagnostic criteria for ME. So this is what I mean by ME being only the worst of times.
I’m not sure if you’ve heard of disease prestige? It’s where some illnesses are loaded with prestige, and cancer and brain tumours pretty much top the tree. ME and Long Covid swim about in the noxious, festering sewage of a water company spill and John Snow’s Soho street pump with everyone running away as fast as possible.
This is why I think Archie’s advocacy worked so well. He had an immediately empathic illness that rallies rightly with prestige, that already has some treatments and an NHS care pathway that people can relate to. Beth’s disease does not.
Andy, I am reluctant to point to the gender difference between Archie and Beth, but I will refer to it to highlight a point. Gender bias often strikes in the unthinking assuming gap of what deserves time, action and political will and what doesn’t. It is worth noting that ME disproportionately affects women, who account for approximately 80% of cases in some epidemiological studies.
We saw this in the Women’s and Men’s Health Strategies. Men received 60% more funding with dedicated ring-fencing, professional training and specific initiatives for monitoring. Women broadly received commitments to listen and no ring-fenced funding. Its chair Sarah Owen MP warned against these “financial half measures” and that addressing medical misogyny required investment, not just commitments to listen to women. The same applies to ME, and the ME Delivery Plan is even worse than what was promised in the Women’s Health Strategy.
That’s why it was pretty gut-wrenching to wonder if Beth’s BBC clip and letter even reached you? Whether it had slipped into that reactive place at the DHSC that it doesn’t deserve action.
Yes, we know the DHSC refers to the ME Delivery Plan mentioned above, and the initial £4.75 million for the £20 million Sequence ME and Long Covid - but neither are minimally adequate, especially as the MRC have stated they will not fund the study. The Delivery Plan has no implementation funding, has been criticised by charities and has little prospect to improve people’s lives.
I think we need a break Andy, with some twiglets and a cup of tea. I certainly need some deep breaths to get through the next section, which involves some of my story.
I was so moved by the Stand up for Cancer section in your recent Gogglebox appearance. And it really struck me when you said:
The only thing that does give hope. There is so much incredible research going into it. And some of the main cancers of years ago. There’s been such big big progress on them.
For this, I’m so grateful that there has been medical progress, but ME research is virtually non-existent. Between 2019 and 2024, government research funding amounted to £496 million for dementia, £79 million for Parkinson’s, and just £6.5 million for ME.
Ellie from Gogglebox said, “Every parent’s worst nightmare.” And cancer is. There is no doubting that.
Yet when I did a Times article with Sean O’Neill, it was originally called “I’d rather have cancer than ME”. This is because there is so little medical understanding of ME that it becomes dangerous to seek medical and hospital care.
Sean’s daughter Maeve Boothby O’Neill died at home from ME. Hospital care was so dangerous for her because there was and is no NHS-commissioned care for the very severe, and she couldn’t get the nutrition she needed. Social services were also called in because they thought the family was to blame. I think, Andy, you would agree that this is also every parent’s worst nightmare.
I speak from direct experience as we have a daughter with ME and Long Covid too, and this meant immediate suspicion from a locum GP because we had the same disease. And yes, that is a red flag in the updated RCPCH FII guidelines, which also REALLY need changing.
Social service referrals are not uncommon in families with children with ME and Long Covid. The Action for ME survey reported that 1 in 5 families reported safeguarding investigations.
So what am I asking you, Andy? I would love a long list of actions that you promised Archie, an equivalence, some hope for people with ME and Long Covid that we are desperate for.
The problem with ME and Long Covid is that the problem is so huge it’s easy to run from.
But I’ve seen you’re not a man to run from a challenge through confronting social care. We need radical reform in medical education, NHS care provision and research. We need a revolutionary new approach to infection control and clean air, and not to run from the fact that Covid is still here and disabling people.
I am asking for three things to give us a start, and some hope:
Fully fund the Sequence ME and Long Covid research project to the required £20 million.
Commission an NHS national service for severe and very severe ME, providing consultant-led specialist care, clinical nurse specialists and home-based medical and social care provision for those unable to attend hospital.
A parliamentary Select Committee inquiry into the historical and ongoing failures in ME healthcare with consideration of a subsequent statutory public inquiry.
We both know literature is not superfluous to the practical political world, and Sydney Carton’s last lines in ‘A Tale of Two Cities’ show this:
It is a far, far better thing that I do, than I have ever done; it is a far far better rest that I go to than I have ever known.
This points to the themes of revolution, sacrifice, redemption and paradox that are so politically and personally astute for this situation. We know Carton is wishing for a hopeful future for the family he saves by action.
And it is time that people with ME and Long Covid stop having to sacrifice themselves. It is time that the paradox of Goodburn vs Dobbin is resolved to Goodburn and Dobbin by decisive political will. That enacting these three actions would be the best thing that you could do for millions.
So I’m on my knees sending a box of twiglets, pleading with you to act. I do not want to have to barely exist in a darkened room for 22 hours a day like Beth and thousands of others, or for me and other families to avoid doctors because we are afraid of the consequences of being reported to social services.
Thank you for listening, Andy (hopefully).
PS. To end on a lighter note, my other half, who valiantly cares for both of us with severe Long Covid and ME, says aren’t twiglets “the best of snacks and the worst of snacks.”
ME and Long Covid certainly divide opinion too, but hope and change are possible, as indicated by this mighty report from the government of Iceland. May it be a final gift to give you an idea of what is needed in the UK.
Dear Readers,
If you wish to take action too, you can choose from these three options!
Pick up quill, pen or keyboard and write from the heart to Andy too, with an option to enclose a pack of twiglets:
The Rt Hon Andy Burnham MP
Prime Minister
10 Downing Street
London
SW1A 2AA
Post on social media using the #DearAndy hashtag to explain why he should fund Sequence ME & Long Covid, commission NHS care for the severe & initiate a Select Committee Inquiry.
Use #ThereForME’s and ForwardME excellent template letter to write to your MP and see their briefing package.
Other LCA update - we are redoing the website! This might take some time but we’ll get there. If there is anything you’d like us to include let us know. We are also continuing the 101 infographic series and the '101 for Reinfection' should be out very soon - there's just a few finishing touches to go.
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