ON NOVEMBER 29 this year, a groundbreaking study by German research centre Helmholtz Munich and Munchen University was published. 

It seems to confirm beyond doubt that the condition we call Long Covid (LC) is “real” — physiological, as opposed to psychological.

The long-lasting brain effects many sufferers have reported may finally be explained by its findings — that the SARS-CoV-2 spike protein remains in the brain’s protective layers and the bone marrow of the skull, for up to four years after infection. 

This, researcher say, may trigger chronic inflammation, and an increased risk of neurodegenerative disease. 

You could almost hear the Long Covid community’s weary, collective “We told you so!”
 
It’s been a long and draining few years for them, as sufferer and activist Sam Williams told me recently when I spoke to him about the hand-grenade LC had lobbed into his and his family’s lives. 

Sam says he feels as if he’s in mourning for the life he had before — and, in 2019, it was a good one. 

Sam Williams

Sam was a fit and healthy husband and father, probably fitter than most men in their forties, with a very active lifestyle, including running marathons.  

Now, he describes himself as “completely broken.”

Sam has lost not just the everyday things — the ability to work and to drive — but much of the fun of life, too. Family bike rides, camping trips and long walks with the dogs are now a thing of the past. 

Sam can’t relax with a drink, because alcohol makes his symptoms worse; and, he says, has  rarely been able to be sexually intimate with his wife since becoming ill, which has naturally affected their relationship. 

Sam’s wife has had to take on a higher-paid job to cover bills, and to take over far more household chores. “It’s like a whole new relationship,” Sam says. He feels guilty about this, and although he knows, logically, it’s not his fault, that doesn’t stop the self-blame. At times, he tells me he’s felt hopeless, and even suicidal. 

It’s incredible how we ignore the growing group of people enduring similar experiences. It is also partly because we ignore it that the LC community continues to grow. Fresh infections occur as people eschew masks and other simple mitigations; so new cases of Long Covid develop,  and older ones are worsened by repeat infections. 

Currently more than two million people in the UK say they’re suffering the effects of Long Covid, and the vast majority — 1.5 million — find their everyday lives impacted. 

An astonishing one third of all health care workers have Long Covid symptoms, and 1 per cent of all our children. 

More than half of those reporting Long Covid symptoms say they’ve been suffering for two years or more. 

As there’s still no diagnostic test, we can only say people report themselves as LC sufferers.

Accordingly, people can’t seem to resist “helpful” advice: Think positive! Just get on with it! Have you tried this essential oil? 

No chronic illness sufferer has, as far as I know, ever recovered due to being told it might be in their head; it’s an attitude that has made Sam himself sicker, as he’s tried to “push through” his symptoms — which only increased them. 

While we don’t know yet how the Munich study will be received, change seems likely to be slower than sufferers would like, and than we all need. 

The current situation leaves people who are already exhausted and overwhelmed by illness facing further battles: with ignorance, with self-blame, and with the system, as they struggle for a diagnosis. 

Sam is not alone in saying he feels abandoned by a society in “deep denial” about his condition. This sense of isolation is all the greater for being one of very few Long Covid activists of colour; he also suspects this makes it even harder for him to get his voice heard.   

The media seems generally uninterested; this should be a national story, but appears to be regarded as yesterday’s news. LC is just not, it seems, in any sense “sexy.”

Two of the UK’s best-known writers share Sam’s struggle.

It’s well-known that Michael Rosen became seriously ill with Covid after contracting it in March 2020.

The bestselling author, poet and presenter was in a coma for 40 days, in intensive care for 48, and in hospital for a total of three months.

Michael Rosen

Rosen still has blurred vision he suffers in his left eye, and hearing loss in his left ear, which unbalances him.

“I’ve also got numb toes. It’s as if you have these strange cushions underneath your feet,” Rosen said in a recent interview.

“It’s possible that these creaks and pains which I call ‘pinball pains’ around my body have increased a lot since Covid. But if I do a lot of stretching, that does help.”

Rosen had also some counselling to talk through the hallucinations and delirium he experienced in hospital, although he says his dreams were “more hippy-like than nightmarish” — he can recall bizarre visions of, inexplicably, German Christmas parties. 
His sleep remains disturbed: 

“There are some nasty moments when I wake up in the night. I call it ‘Lonely Corridor Syndrome’. As I’m lying there, I’m instantly back in the hospital lying there. It’s a very mild form of post-traumatic stress disorder.

“There’s not much you can do about it immediately. I have to go into various forms of mental and physical tricks to play on myself to put it away again. It’s a sense of loneliness.”

Rosen described his ordeal and recovery in Many Different Kinds Of Love, combining prose and verse with enduring tribute to the NHS. It’s a good sign that his latest book is called Getting Better; but it’s still an ongoing process, and Rosen acknowledges the importance of family support, not available to all: “I dread to think what it would have been like if I’d just come home to an empty house.”

Another acclaimed author and LC sufferer is AL Kennedy. 

AL Kennedy

I spoke to Kennedy about how she feels now, as she recovers from another Covid bout. A very fit woman with a punishing schedule, Kennedy has found her literary skills affected as well as her body: “With the LC my heart beat is still 10/15 bpm faster when I’m just generally unfit — much faster than my fit rate. 

“I can work, but I’m slower.”

I can’t see a drop in quality in new work she’s kindly sent me compared to her old: but Kennedy of course knows her style better than anyone, and she can. It’s frustrating: “[My work] still needs more rewrites than it did. I need a lot more rest. The thyroid rumbles along in the background. If I lecture, I have to set out notes for safety and follow them.” 

She was used to being able to speak spontaneously and just follow the track her mind took. 

“I’m way better than I was,” Kennedy reflects: “In 2021 I would be knocked out for weeks at a time. Semi-permanent migraine, couldn’t finish sentences, couldn’t remember tasks to complete them, probably not a safe driver...”

Life is still not the same: “A lot has improved, but I live in fear of re-infection; and group work is hard to run in a mask. When I’m working at a uni, or travelling, I am basically in a mask for seven or eight hours straight... I compromise on stage without a mask and then signing [books] with one... It’s miserable,” she concludes. 

The future is unpredictable, both in how Britain will react to the news out of Munich and how the condition will develop: researchers have found evidence of the protein spike four years after infection not because it goes away after that, but because four years is all the distance we currently have from those first infections.  

As Sam says, “Many people recover. Many people get worse. A few weeks ago, I met Alan, who got Long Covid in March 2020. This March he had a mini-stroke, and lost the sight in one eye overnight.”

Sam tends to operate on pure adrenalin, which is unsustainable long-term, and means his Long Covid activism takes a toll on him: as much as he wants to raise awareness, and as vital as that is, every article he writes, every radio appearance, drains his limited resources of energy. A Catch-22 situation. 

Sam is not impressed by the new government’s response so far. 

Although figures reveal LC leading to higher healthcare demands and costs, meaning it is both an economic and ethical imperative to tackle it, the Department for Health and Social Care seems coy about its plans. 

Parliamentary Under-Secretary Andrew Gwynne admitted, in response to a parliamentary question form the Greens, that he chaired a “roundtable” of researchers and “people with lived experience” in October this year.

The LC community has been unenthusiastic about what it calls this “secret meeting” to which they say they were not invited: and they want concrete information about Gwynne’s next steps. 

Sam considers himself to have disabilities as a result of LC, as many do; he is also extremely concerned by the late November passing of the Assisted Dying Bill.

“I am absolutely horrified by it,” he tells me.

“In Canada, they started off with assisted dying only applying to the terminally ill.

“Then they expanded to include chronically ill and disabled people.

“I, and many other disabled people, are terrified it will happen here in the same way. And there’s no coincidence that the Assisted Dying Bill comes at the same time as the white paper on Getting Britain Working.”

The government must act fast to take on board the Munich findings, and involve activists like Sam and the wider the LC community in an open and transparent process for future funding, support, treatment and mitigation. 

This is a frightening and unpredictable condition which could affect any one of us at any time: and an increased cohort of people with disabilities at a time when our National Health Service has been pushed to its knees is alarming.  

Labour must act fast, must involve activists like Sam Williams, and must make Long Covid a priority, if we’re not going to deepen what is already a crisis.