Six years is probably enough time for this bottle to have arrived intact on some far away shore, and to have been discovered by others. Personally, it feels like the message was read, crumpled up and thrown back into the ocean.

For six years, we've been asking for recognition, research and rights. In recent years, Long Covid Clinics have closed, been scaled back and to be honest always left us disappointed. The truth is, while some have recovered, many of us are still missing from society since the first wave of the pandemic. And while the UK Office of National Statistics used to count us, it no longer does. The closest we have to a count is the responses in the annual GP Patients survey for England – in 2025, 4.2% reported having Long Covid and 9.5% were unsure. The scale of this suffering is still hard to take in, all these years later.

And we haven't just been concerned with ourselves, the unlucky ones to be disabled so early by this novel virus. We've pleaded with other people to protect themselves and their families from this serious disease, and we've pleaded with a largely moribund public health sector to play its role and take action to protect health workers, patients and school children.

We've been met with a wall of silence, including from a public health secretary who struggled with Long Covid himself.

Society and policy makers have decided that repeat, frequent Covid infections will be our way of life now. In spite of very worrying data about the impacts of the disease.

As I write this, a very close friend's teenage child has just been diagnosed with POTS and is showing very worrying signs of extreme post-viral fatigue. For her post-viral condition, there are no new treatments, there is no new help for her. Six years later, all I can recommend some intensive vitamin supplementation, and radical rest and pacing. Her mother doesn't dare to call it Long Covid.

I live mostly at home, a very Covid-cautious life. I've even stopped checking on the project to create a sterilising vaccine, that would allow me to stop masking indoors when I do have the energy to go out. A couple of years ago, I still held out hope that I could one day socialise “normally” indoors. Now I've simply given up. This is our life now. I can hardly handle the noise in indoor cafes and restaurants anyways. Same with music gigs, or anywhere people talk loudly in numbers.

To be quite honest, I feel like an outcast from society. This society hates the sick and disabled, and it definitely hates mask-wearing people who remind them they could become sick and disabled through the air they breathe at any time.

Today is labelled a day of awareness, but we must recognise in the case of Long Covid, we are not merely raising awareness. We are combatting willful ignorance. People actively do not want to know about Long Covid, and the long-term health consequences of Covid infections. They do not want to see us. This is the plain truth.

In light of this, and my hermit life, I must recognise the organisations and projects that are actively standing up to ignorance. They give me hope and make me feel slightly less alone.

• Just added Breathe Easy – Sheffield / London
• Long Covid Justice (they just co-launched the Long Covid Oral History project)
• Long Covid SOS
• Mask Blocs
• Patient Led Research Collaborative
• Public Health is Dead podcast
• The Sick Times (news outlet)

I hadn't realised it was the fiftieth anniversary of the violent day around the time my dreams encouraged me to seek out the novel. I'd just remembered how deftly he had created this distant world for the reader, and invoked the sense of dissociation that occurs with the fog of war descends on a city.

After re-reading the powerful first chapter, which ends with the true-to-life Indonesian special forces mass murder of political prisoners on the capital city's docks, I stopped.

I needed to understand how Mo was able to conjure these scenes.

In a piece he published just over 10 years ago about a visit to the country, now independent at last, Mo shared that just like me, many Timorese readers could not believe he was an outsider. Many thought his pen name was meant to sound like a garbled “Timor”. From the moment it was published, his text circulated among political prisoners in Indonesia, just like it circulated among people in Dili when I lived there a decade later, a dogeared paperback that had been devoured over and over again.

I did not get an answer for Mo's craft, his secret. It seems plausible that in the late 80s, he was personally friends with now-president José Ramos-Horta, whose character of a different name he gently mocks in the text. But Ramos-Horta was not present the day of the invasion, he had been sent to the UN to plead for help. Mo must have debriefed multiple witnesses, sought out numerous archival sources.

In any case, this book is by far the most effective account of the invasion of Timor-Leste. And it is fiction.

I think what Mo proves is there is something simultaneously beautiful, horrifying, sensorily fragmentary and perhaps so ineffable in a dissociative way about an invasion (and subsequent military occupation) that only an artist can do it justice.

I meant to write this blog post in a couple of weeks time, but it feels so relevant today given the US' direct attack from the sky on Venezuela.

Like the current invasion by the US, Timorese had anticipated the Indonesian invasion for months. (Australians will remember the October 1975 Indonesian special forces killing of Australian journalists in the border town, Balibo.)

Mo's protagonist says

In fact, the invasion hardly took us by surprise. We'd all been expecting it. The weeks, months, of move and counter-move, the destabilising, the broadcasts of our neighbour, the marching songs, the relentless playing of their anthem, the incessant messages of support for the Amalgamationists, that is the party who favoured integration with the larger neighbour, the incursion over the mountains, the burning of villages and crops, had evoked a popular mood of near-hysteria. We'd been waiting for it, sure, but when it came it was still a shock. Like being struck in a bar if you're a peaceful person: even as you know the shock of the blow, you cannot acknowledge it has been struck, refuse to believe in the enormity.

I aim to create an audio file of this first chapter as soon as I can, so that anybody can appreciate it in their preferred format.

In the meantime, there are copies for borrowing on the internet. But if you can, please support Mo directly himself, as he battled with the UK publishing industry and ended up re-publishing the book himself in 2002 (an echo of Timor-Leste's own re-independence that very same year!)

—

Update: This post on Global Voices seems to capture the Venezuelan experience of invasion quite well. Gabriela Mesones Rojo writes:

There is something particular about realizing that war is moving closer to you. The images, the emotions, the sounds, even the smells. The way we slowly grow accustomed to new forms of violence, repression, and exploitation.

The soundscape of war — another sound added to an already brutalized country, another terrifying entry in our glossary of violence.

If anything, at this time I realise I need to focus on the cyclic and more-than-human timescales that we can observe in the natural world.

This year, I wrote about a particular kind of tree, that reminds us that what could appear to be an end can in fact be a new beginning.

I submitted the essay on a whim to the New Nottingham Journal and got it published! I'm sharing here but I encourage you to subscribe and/or support the fledgling NNJ if you can.

—

Phoenix Trees

There is a row of cherry trees in the Forest Recreation Ground, leading to the playing fields. They are generously sized – clearly the oldest in the park, their flowers heavy and humid when cupped in the hand. The trees form a canopy, this tunnel of petals that I imagine being like Kyoto. These cherries bloom during a certain week or fortnight in April.

In 2020, when I got up from my Covid sick bed for the first time to leave the house, they were in full bloom. It was Easter Sunday. While I’m not Christian, I did feel a certain new start that day, fancying myself free of the frightening new virus that loomed over us. I didn’t know then that this feeling – rising from my sick bed and coming back to life – would become familiar.

Five cherry blooms later, I am still sick. My energy is severely limited; I spend most of the day with my feet up.

As I’ve come to learn in outings on good days, there are other notable cherry trees in the Forest Rec: the big one at the café, which creates a big pink corona over the space, and the white cherry grafted on top of another pink one.

Or the row that runs near the park-and-ride car park, where they’ve been interplanted with delicate birch trees.

But the other cherry trees that marked me are the ones just outside the wall of the Rec, in the Rock Cemetery.

They’re found in a sunken, walled section of the burial ground, where the victims of the 1918 influenza pandemic are buried.

These trees are massive, perhaps the size of a gigantic tropical ficus – the ones with the hanging aerial roots. When their leaves come in, the cherries provide shade for the massive stone markers made to honour those stricken by the flu. Names had once been carved on the markers, but are no longer clearly decipherable.

There is no gentler way of putting it – this is a mass grave, and it was designed to be hidden from view. To reach the space, you wander to the back of the cemetery and take a set of stairs – each one tall but spaced widely apart. The place feels like an imagined hypnosis prompt. One cherry flowers early, the other waits until April. They rise above the cemetery wall and, as we walk in the Forest Rec between January and April, they wave to us with their thousands of bright hands.

Besides the cherries, the centennial oaks are the other trees that mean the most to me in the Rec, and recently I found myself discussing them online. This was unexpected.

I’d joined the ‘Queerdos’ Zoom for disabled queer people in the Nottingham area, and towards the end, our facilitator Evie proposed an exercise where we’d give voice to trees.

She sent a photo of eight tree types – oak, chestnut, spruce, and so on. Then she floated off to the next breakout room, and there was a long silence. I think perhaps everyone had expected to give voice to an individual tree, a lone witness to our world, not a variety – a tree stereotype!

Somebody expressed this thought, which was greeted with nods. I said I often imagined the oaks in the Forest Rec had harboured chats between Luddites. The person who’d spoken replied that their ancestors were Luddites. Then they talked about a conker tree from their childhood that had fallen but remained alive, recumbent – a phoenix tree. Their siblings used to climb up and down it, practicing key tree-climbing skills.

That sparked a discussion about these trees, which only need a couple of roots in the ground to live. I mentioned I’d just seen a mature birch like this – with perhaps 90% of its roots just floating in the air, dried out and inert. But while it lay down, the birch was thriving.

There were nods, and an unspoken recognition about the symbolism that such a tree had for us. The Descendant of the Luddites interjected that the exposed roots of these trees can unearth archaeological treasures – as if the tree were performing a grand reveal, just for us. Then they mentioned the massive tree in the Arboretum that’s supported by sturdy iron braces. Oh, I chimed in, the fig tree. We were the only ones in the room who seemed to know what we were talking about.

I had immediately remembered the Scottish Covid Memorial, the work of Alec Finlay, an artist with ME-CFS and Long Covid who I’d met in an online support group in the early days of my illness. Despite being unable to walk beyond his garbage bins, he had conceived and created the memorial in Pollok Country Park called ‘I Remember’, which is made up of 40 ‘tree supports’ – wooden braces made for oak trees which have begun to lean. Some look like stick figures, pushing back against the trees leaning onto them. Others look like utilitarian objects. Each one has been custom-designed and imprinted with a short phrase: ‘I Remember’.

Here in Nottingham our Covid memorial is one hornbeam tree, still-juvenile, planted in the Forest Rec. The dedication took place on a grim March day; there were maybe fifty people there, bearing daffodils. Some brought printouts in memory of their loved ones, in plastic sleeves to resist the rain. It was such a profoundly lonely event.

Not far from this young hornbeam tree, there is an old recumbent oak, which fell over just after the Covid tree was dedicated. It’s part of a line of oaks that I figure are between 150 and 200 years old. It might have heard the Luddites’ conspiratorial conversations.

After the online discussion I found a paper called ‘The Ecology of Scotland’s Wonderful Recumbent or “Phoenix” Trees’. It suggests that only older trees tend to fall and stay alive; it is not uncommon for a 200-year-old tree to fall and then live for another fifty to eighty years. The authors aren’t sure why none have been found to live longer than this: whether it’s because they die off naturally, or because people use them for timber.

The paper argues for an effort to raise awareness about phoenix trees, and the ‘value and significance’ they hold. It says that professionals and landowners need to be brought along so that they don’t just consider them waste and chop them up. I was pleasantly surprised, I confess, when our park staff didn’t dismember and remove the recumbent oak.

‘Phoenix trees,’ the paper reads, ‘combine several compelling elements: their enigmatic sculptural beauty, their compelling efforts to survive against the odds, and the unlikely stories of how they adjust themselves to their recumbent positions.’

On days when my health allows me to walk to the Rec, we visit this oak, taking the dog up the reclining trunk, mining its bark with treats. My partner complains, justifiably, about the litter and used condoms at its base. We often talk about leaving a sign in the voice of the tree, asking people to respect it. Still, I have no doubt that – if the chainsaws are kept away – the sideways phoenix will outlast me.

June 14, 2011 Dear “Development,”

By the time you read this letter I will be gone. We have been together a total of five years, with a long separation in the middle when I nearly eloped with social anthropology…. In our first stormy year, I was the “local hire” expat on a bicycle. The other four, I have been based at headquarters, where the biggest crises seem to revolve around lack of milk for tea.

I studied you, Development, at university, never really imagining myself working for an INGO. I was always more interested in culture, history, the lived experience of people coming out of colonialism than in “you,” the economic development part. Okay, so I was interested in human rights, but that was an indulgence – I always perceived that the rights obsession has its own perverse consequences in certain contexts.

I have been lucky in the two jobs I had – both allowed me to dodge the massive compliance edifices being constructed around me. These jobs allowed me to make other friends, they were not the jealous types.

In my last job, at an organization majority funded by individual supporters, people gave to us for who we were. Something I thought could free our hands to focus on the causes of poverty and to avoid what I have seen in many agencies. You know, the ones more dependent on government monies hence spend so much time bean-counting and measuring that they are unable to work with the people closest to the reality on the ground… the ones that treat development like a massive Rube Goldberg machine, where you put some inputs in, a series of technical and scientific interventions are applied… et voilà. People are pulled out of poverty, and “sustainably,” at that.

Thanks to Andrew Nastios, I learned that this approach is actually more Ford and McNamara than Rube Goldberg. That the reason “development” feels so bankrupt to me is that all of its tools, its systems, its approaches emanate from the managerial thinking that gave the world the car culture, and that made the Pentagon so powerful.

In my latest post, I worked in an environment of total cognitive dissonance. Where the language was of solidarity, of partnership, but in our day-to-day we tangled with massive compliance systems. Forcing them on social movements and NGOs in the Americas, Africa and Asia. All of these systems totally overdone, considering the level of trust our supporters had in our work. Obviously we needed strategy and to know partners were doing good work – but systems balloon and mushroom out of control. Even those creating them recognized their Frankenstein(s).

I was one of the only people given the slack to actually get to know our partners without jamming their words into required tools and reporting forms. I often wondered why people did not express greater envy about my job – the fact they did not was worrying in and of itself.

Against this backdrop, I was involved in trying to create a responsive, light monitoring and evaluation system that would “protect” the work we did on the crucial stuff that Duflo and co. cannot “randomize” – campaigning, policy influencing and social change. A worthy thing, and I feel almost like I am betraying those I have worked with on this by quitting now.

But our leadership does not really get what is at stake. Even in my relatively enlightened corner of the aid business, people are busy just simply being busy. Defending their little corner. Stuck building systems that are not for people but for abstracted automatons.

Our leaders are not serious about scanning the horizon, about admitting that the public is right to scrutinize aid. I hear none of the kind of serious soul-searching that the moment requires.

We repeat transcendent values like dignity and justice as mantras yet we are blinded by bureaucracy and relentless self-interest. We keep running into the breach and doing the work that governments must do for their own citizens. As much as Dambisa Moyo annoys me, why can’t we set a date for when this should be over? What would it look like if INGO staff actually dedicated themselves to the sensible cliché of “putting themselves out of a job”?

People all over the world want to feel good, or even maybe just more ok. Even though most know humanity is screwed in the long run, people yearn to go where the energy is. Yet INGOs keep appealing to them with the same negative images, and collecting cold data for their institutional donor patrons. Individuals, and I would venture even taxpayers, do not need experts to spew evaluation data at them. They want to feel a stake in what is generative, what is life affirming. Statistics have a role, but their role is a backstop. People in the US and Europe want to support others in their struggles to make things better, and they want to see the connections between here and there.

In the end, the truth is that I feel very exhausted. And hurt. How is that possible? I am not hurt because of a failure of leadership per se, or a lack of vision in the sector. (I am more than aware of my borderline pathological disdain for authority, which I done my best to keep in check.)

What hurts is being there. Taking this daily battering of double-speak, seeing my peers stripped of illusions slowly becoming jaded, mercenary aid worker hacks. Or seeing them simply jump ship to do the same thing elsewhere, like a change of scenery will make everything better. Or even worse, seeing them bury their heads in the sand.

Oh, Development, no amount of earnest critique, satire, or wounded camaraderie can save our relationship now.

So while I am disappointed in you – I tried so hard to make it work – I am not bitter. In spite of this hurt, I remember back through the last couple of years. You introduced me to amazing people. Some of these mutual friends we can keep. (That is if you do not make a voodoo doll of me after reading this letter.)

I am going to be starting some projects with like-minded friends, that are not about the same old patron-client relationship, repackaged in managerial logic and dragged out for post-colonial generation after generation. These projects are about trying to link people of good will, with energy that does not come from a knee-jerk guilt reaction.

If I fail, great, but I have failed as a human and not a cog in a lop-sided machine.

After feeling that I landed on my feet, I wrote this advice for others wanting to leave that Alessandra Pigni republished on her blog and later in a book she wrote. She is sorely missed.

Our dear friend Fausto Belo Ximenes, known as Nino, who died recently at the age of 43, was brilliant, always curious, funny and stylish. He worked incredibly hard, and achieved what he set out to do, including becoming one of the first Timorese country directors of a major humanitarian agency (Oxfam) in his home country of Timor-Leste.

Nino grew up on the slopes of Mount Matebian, during the Indonesian occupation, in the years after Indonesia’s relentless bombing campaign on the mountain. He said in retrospect it was a time of profound fear.

In 1999, when Indonesia retreated from the territory destroying everything and massacring civilians, at the age of 17, Nino fled to the jungle. One of the few things he took with him during his 10 days in hiding was an English dictionary, and he learned enough English to get a job with the incoming United Nations (UN) administration as an interpreter.

We first met him as this bright young man, who had postponed his formal education to learn firsthand about human rights and development. Even then he had a constructively critical sensibility, with unbounded energy and genuine care for others.

Whether being stranded in the middle of a rice paddy after a breakdown, or searching for an open dry cleaner on a Sunday in Manhattan, Nino was the perfect, upbeat companion.

His intelligence, love of reading and work ethic led him to academic success. Nino graduated in 2017 with a Master of Public Policy (MPP) from the University of Oxford’s Blavatnik School of Government, the first East Timorese student to graduate with a degree from Oxford, a town with a disproportionately large Timorese population.

In his prior Masters degree in Human Rights, Nino was also the first East Timorese Erasmus scholar, and he delighted in his time studying at the Arctic University of Norway in Trondheim.

He most recently held a prestigious Yale World Fellow post in 2024, where he reflected on his life and work leading teams in post-conflict societies. The World Fellows Program wrote of his “relentless optimism” in a tribute.

Prior to Oxfam, Nino worked as a Graduate Researcher at Oxford’s Changing Character of War (CCW) Centre, a Senior Access to Justice Manager on a USAID project, an adviser to the Timorese Ministry of Education, a Human Rights Officer with UN, and a legal researcher with a local NGO monitoring transitional justice.

Nino dreamed of a big life from the village where he was raised and he made it happen. And his dream wasn’t just for him, but for his newly independent country.

Nino is survived by his parents Rosa Vitória and Vítor Belo Ximenes, a nurse, his nine siblings, and a large extended family in Quelicai, Timor-Leste.

We're currently working on endowing a prize for young people to remember Nino in Timor Leste. If you'd like to contribute, please contact me directly.

It's been five years since many of us first got sick. And today is Long Covid Awareness Day.

Five years ago few of us were aware of post-viral conditions. Some of us had really traumatic acute infections, some of us didn't even fit the official symptom list and concluded on our own we had Covid. But all of us started feeling a real sense of disquiet and growing panic as our symptoms came back over and over again, or persisted after the initial two weeks.

Ondine and many of the core group of Long Covid SOS found each other on Body Politic, an online support group created by Fiona Lowenstein and queer activist friends in the US. Ondine had seen Fiona's emergency flare fired off in the New York Times.

The UK channel of Body Politic became a place of genuine friendship straight away. Knowing we weren't alone was so massive. All of us were coping in different ways, given there was no help for us in the official system. It became clear that only a handful of people had the energy or inclination to become activists. Ondine was the most visible.

In 2023, she told the story eloquently to the Covid Inquiry.

During those days, I was very concerned with the employees of the small organisation I'd founded. To be honest, my life was unraveling, and I barely had time to come to terms with it. But it gave me great comfort that Ondine (and others) were doing exactly what I would be doing if I could.

From early on, I remember listening to Ondine and trying to help her navigate through tough personal dynamics amongst a group of traumatised and ill campaigners. I remember cheering for her, and letting her know that persistence and relentless tail-wagging would eventually get us where we needed to go.

She was able to build a functioning charity, with extremely limited financial resources, but more importantly build an activist team that revived the caring spirit of our support group. And she had a massive impact in everything she did.

Among us spoonies, Ondine shone as someone with a seemingly limitless fount of spoons. (She did struggle with her health, and occasionally need to rest.) She loved to go deep, to network and probe for new possibilities. And she wouldn't take shit from anybody. All things I identified with – that is, the pre-sick me.

But talking to her was like opening a firehose! I became conscious that I actually needed to pace myself in engaging with Ondine and our campaign. This was a recurrent source of grief and regret for me, as my natural inclination would have been to charge the barricades with her, hand in hand.

Now, looking back, I am experiencing a deep sense of loss for not just sweeping away all of my other obligations and dedicating myself to our cause and our friendship. But if I wasn't trying to safeguard what little health and energy I had, I was forced to continue to work to earn money.

That said, I did have lots of good laughs with Ondine, about family, pets (she kept beautiful hens), politics, part-time paid work, the media... We were friends, she felt like a close friend even though I only met her three times in person. I will always remember her laugh, and her move to sweep back her long hair.

At a certain point, we learned Ondine was battling a bigger illness than Long Covid. Later, we learned our time together would be limited. But we never imagined we would lose her as fast as we did. It came as a real shock to us.

My last messages to Ondine were utterly insufficient – my last chats to her, focused on helping with continuing her legacy. But I feel lucky to have been able to give her a big long hug at the end of January.

I promised her I would do everything possible to resource the group and find somebody to take a front-person role, something I could not do.

And just as we pass this five year milestone, and it feels we have been entirely written out of the history of the pandemic and forgotten by our government and wider society, we are in mourning. We are floating in our lifeboat, knowing that we all made it to this point thanks to Ondine. And like Ondine, we will be tenacious, rigorous, never give up, and never forget to laugh.

I'd like to express my gratitude to Ondine's family, who were probably sometimes baffled by her dedication to our cause but supported and loved her. She loved them so much. Our whole community is sending love to them now.

The disabled double-bind is arising strongly in many areas of life at the moment, and getting my pressure up with every email digest sent by Disabled People Against the Cuts and every article published by the essential Disability News Service.

This post is largely UK-focused, but I can see these trends emerging in “wealthy” (but unequal) countries across the globe. My spoons will only permit me to look into three areas: access to the safety net, euthanasia legislation, and what I'll call “communitarian salvation from fascism”.

Access to the safety net

This Kafkaesque, absurd story about a blind woman denied benefits because her mother helped her get to an in-person assessment on public transport seems to illustrate the point quite well. “Well if you can get to this assessment...” was the logic of the private company that denied her benefits.

The disability benefits system is by design hostile to disabled people, and specifically hostile to disabled people who are unable to work, mostly because society has been designed to exclude them. These folks get trapped in the cruelest double-bind.

The last government said they would take away benefits from 424,000 people in this double-bind. This government claims it will make an equivalent savings, but refuses to let the public know how, leading us to believe they are planning to go ahead with the proposed benefit grab. And this government is parroting (or outdoing?) the nasty Conservative rhetoric deployed against this group – reminding us, that ultimately, Labour only cares about people who can work here and now.

Norwegian author and scholar Jan Grue recently wrote that while we've mostly moved beyond a “medical model” or a personal tragedy model of disability, we've entered a troubling new ableist era:

Arguably, however, the new, socially legitimised disabled role that has emerged in recent decades regularly represented in global discourse by multinational companies’ diversity campaigns and in quadrennial advertisements for the Paralympic Games, derives from the requirements of neoliberal capitalism and is just as tightly bound to ableist values as the older disabled role.

This new role can be understood, in keeping with Tanya Titchkosky’s definition of the ‘able-disabled’ (Titchkosky, 2003, 2007) as centred on the subset of disabled people who are most likely to be able to adapt to existing social structures, particularly in terms of productivity—those who can survive employer’s tendencies to compare disabled job seekers with ‘ideal’, non-disabled workers in terms of productivity (Østerud, 2022). This is the group whose combination of resources (embodied, social and economic) is sufficient for them to compete in work life and other societal fields. This minority within the minority may benefit disproportionately from the lowering of formal barriers to participation, for example, from anti-discrimination policies in hiring and from broader implementation of universal design. But it requires them to fit narrowly into the ideals of ‘productive citizen’, that is, someone who is unburdened by familial or care obligations and who can adapt to existing structures in most respects.

I fit in this category for the moment. Being “able-disabled” comes with its own terrible double-binds. To avoid the evils of the work capability assessments described above, I am working to live, and more often than not, I can feel that my 21 hours of work are negatively affecting my chronic illness. (And potentially undermining any hopes I might have of recovery.)

The disability benefits are their own extra double damnation. For the past two years, I resisted applying for “Personal Independence Payments” (PIP) as I knew the process would be exhausting (and I have an energy-impairing condition) and both dehumanising and destructive to my fragile mental health.

But it turns out it is really expensive to be disabled, and I have watched my savings dwindle and have started to become nervous about my future, so I have subjected myself to the stress, humiliation and energy drain of the process. All the while knowing that I am more likely to be rejected than to get help.

It's worth noting here that a recent government audit of PIP revealed zero net fraud from this benefit. The sheer violence of this number is not lost on me, or any number of people hesitating to apply like I did. It's a double-bind of deepening poverty, or subjecting oneself to this neoliberal inquisition, or auto-da-fé.

Euthanasia legislation

In the first months of this new Labour government, there is a piece of legislation that seems to be getting a lot of attention. The Terminally Ill Adults (End of Life) Bill will be debated at the end of this month. I'm ashamed to say, before becoming disabled, I would have supported this without a second thought. I would have been satisfied with its proponents' talk of “safeguards” and the notion that it was only for the terminally ill. (However the actual legislative text has yet to be publicly circulated so...)

But once I started read about how euthanasia has become the fifth leading cause of death in Canada and has been used to allow disabled or chronically ill people, failed by the country's safety net, to die, I realised the horror of the mere introduction of this legislation in these times.

This against the backdrop of the dehumanisation of disabled people in accessing the safety net, but also following a global pandemic, during the height of which at least one NHS trust issued blanket “do not resuscitate” orders for disabled people. (The Covid inquiry is starting to reveal what really happened – but apparently data is still lacking on how pervasive this practice was.)

Apparently, it's not just disability activists who are shocked at the timing of this euthanasia legislation. The Guardian reports that Labour MPs feel uneasy

Among those who are deeply torn there is a strong feeling that the vote should not take place until the government can show significant improvements to the state of the NHS – or risk sending a dangerous message.

There will always be disagreement on whether euthanasia is ethical – even under the fairest and best circumstances. And there are disability campaigners who have good reason to be pro-right-to-die. There are people with chronic illnesses who want to die.

But I have to say, this double-bind hit me personally really hard when I heard about a woman with a severer form of my condition ME-CFS who went to Switzerland to die. Her final message: “there is no help”. For my condition, there has been a chronic under-investment in medical research. There has been a chronic under-investment in specialist medical care, especially for the most impacted, as came to light with the inquest into Maeve Boothby-O'Neill's tragic death.

How to live when society is ok leaving us to languish in unliveable conditions? How to live when our society can write blanket orders to let us die? How to choose to die when dying is exactly what they want us to do?

Communitarian salvation from fascism

Following Trump's re-election, I've seen many progressives and anarchists proposing that hyperlocal, community organising is the only way we'll survive fascism. I tend to agree. But disabled and Covid-cautious people have felt excluded from most community organising for over two years now.

This 2022 piece by Leah Lakshmi Piepzna-Samarasinha is evergreen. They write

A lot of people have had a brush with what it’s like to live a disabled life these last two years, and a lot of them want to forget it as quickly as possible. They’d rather expose themselves to all kinds of harm than continue to be disabled like us — mask, discuss risk, stay home, pass public policies for the safety of all. Unfortunately, this puts us all, but especially us, at risk. So many abled people — including abled members of the left; including abled queer, trans, Black, Indigenous and/or People of Color on the left — want to forget disability.

I wrote last year about how I felt that solarpunk visions of the future excluded many including disabled or chronically ill people. I feel the same about 99% of antifascist organising. (The mask blocs I've seen in the UK and the US seem to be the exceptions.)

So what are disabled people to do, if we cannot be a part of the social arrangements that will “save us”? How can we “make our own” in-person community spaces when we struggle to care for ourselves, or access public transport? Should we simply take a calculated risk and participate in physical spaces that could render us more sick and disabled?

I particularly feel this double-bind right now, feeling so socially isolated for so long. I've seen that community organisers have for the most part not responded to Piepzna-Samarasinha's heart-felt appeal. So for now, I stand on the sidelines, watching able-bodied people making plans to rally together and save themselves.

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I can't quite explain how all-consuming and all-encompassing this feeling of double-bind is when you are disabled or chronically ill. Some days I experience a double-bind from the moment I wake – should I rise from bed? Should I stay down? Either choice is bad.

But much worse than my daily embodied struggles is knowing that society is designed in a way to make me feel trapped – even those parts of society that claim to be about the liberation of all...

However, I feel like there is a dearth of information out there for people struggling with these conditions about effective treatments. The NHS' own clinical guidelines have not been updated since 2021. So here I'm sharing interventions that help me, that have some sort of scientific basis. Some of them it's early days, and not enough resources have been invested in further research. So this comes with that caveat. Everything here has some, but probably not enough, scientific basis. Everything here is also quite low-risk in terms of side effects, with the exception of HRT.

Moreover, nothing here is super expensive on its own. Although cumulatively, it makes it quite expensive to be ill on a monthly basis especially considering my income has plummeted.

I've tried a lot that I've left off of the list, and I've left anything off that I'm not extremely certain is helping me.

And it's worth mentioning that cutting out as much stress as possible, radical rest, pacing and good hydration and diet are the building blocks.

1) Vitamin B12 – In my case, I self-inject. Others may benefit from “loading” via healthcare providers and ongoing support. This helps with my “concrete legs” feeling and gives me a boost in energy. I also believe it helps my sleep. Before Covid, I was likely borderline, and the virus likely did a number on my gut and massively depleted my reserves. For milder cases, oral supplementation might still be an option. In my experience, the NHS is not really on the ball with respect to B12 deficiency, although the new NICE guidelines are an improvement. [Adding: like many people, after being diagnosed with a B12 deficiency, I later developed an iron deficiency and didn't mess around, I got an expensive infusion which rescued me.]

2) CoQ10 – Coenzyme Q10 is known to help with mitochondrial function. There is a growing body of research that it can help with post-viral conditions. Helps boost my energy envelope.

3) LDN, or Low Dose Naltrexone – this is an opioid-blocking drug that in low doses is known to “modulate neuroinflammation” and help boost endorphins. Given I can't produce endorphins the natural ways through exercise, this seems to help with pain and energy levels. There is loads of information about this drug from the LDN Research Trust. The only side effects for most are vivid dreams, but in my experience these are not nightmares just dreams with extreme saturation. Dosage is tricky and takes quite a number of months to get right. There are online prescribing pharmacies that will help with access, as GPs are unlikely to want to prescribe off-license or off-label.

4) Hormone replacement therapy – I struggle with monthly crashes at the end of my luteal phase. Estrogen and progesterone seem to have helped – for a while – although dosage seems elusive and my GP can't seem to help or refer me to anybody who can. I'm seeking further help with my hormones outside of the NHS. To be honest, this is my greatest area of struggle to find appropriate treatment.

5) Magnesium spray / gel / bathsalts / pills – I take magnesium every night before sleeping. When my pain is particularly bad, I use topical magnesium. This really helps me sleep when pain is an issue, and just helps me sleep generally.

6) Oral rehydration salts – Luckily I don't have too much trouble with sugars, so I take a widely available commercial one. (There are other formulations that are sugar-free.) I often take these upon waking, when I have a bashed feeling. But I will take any time I feel extremely thirsty or drained.

7) H1 blocker antihistamines – I take H1 blocker antihistamines when I feel inflammation in my body. I don't fully understand the growing body of research about mast cell activation, viruses and the like but... they just work. And they are cheap with few side effects. I also take H1 blockers to help my mood pre-menstruation. Again, they just work.

8) High-quality Omega 3 – for my brain function. I can tell a difference when I'm not taking this. Update: Long Covid Pharmd wrote a great post on high-EPA Omega 3, and taking this has been an absolute game-changer for me. No more waking up feeling semi-concussed in the morning. I take high doses morning and night of Vegepa, which Dr Myhill sells super cheap. Sorry vegans and vegetarians, the name is deceptive. But other vegetarian options do exist, I believe.

9) Probiotics through my diet – I've recently been able to start having kefir and yoghurt. (Before I was having coconut kefir.) I've been taking smallish amounts of sauerkraut because of the histamine content. Sadly I overdid it with kimchi a couple of years back and seem to have triggered a capsaicin allergy. So I'm stuck with these ferments for now. I find that the better my gut health, the better I sleep. There is a one to one correlation.

10) Hyperbaric oxygen therapy – Every time I stop this, a couple of weeks or months pass and I feel worse. I have a very inexpensive charity oxygen centre nearby, and there is a lovely, warm community there full of people with different health conditions. But we're all there repeatedly because it simply works. The first time I did it, I slept so soundly. That effect wore off, but it definitely lifts my energy baseline. However, not recommended for those who struggle with breathing.

11) Perrin technique lymphatic drainage massage – I see an osteopath trained in this technique, designed for ME-CFS patients. I also do this drainage massage every night before sleeping. The technique is available online with YouTube videos. I felt relief straight away from this. Some mornings I do this, but with the main important pressure point reverting to the base of my skull on the back of my neck, instead between the sinuses.

12) Meditation / floor yoga / breathwork – I try to do these daily, especially to set a good tone for the day and feel like I'm listening to my body. I particularly recommend spoonie teacher Rachel at Santosha Spirit, or finding a spoonie instructor, as for me even the “easy” videos from popular instructors are too much to handle most days.

13) Cold showers or cold pack on the base of my neck – for when my autonomic system needs switching into parasympathetic mode. For wired and tired feeling, they do wonders.

I wish this list contained one thing that would give me back my energy or do away with my crashes. Although there are some clues here from ME-CFS patients.

Lastly, even though this list is very DIY, I strongly believe we need more research, more clinical trials of existing medication to help Long Covid.

Fingers crossed I will be taking part soon in a clinical trial for Remdesivir, one of the only antivirals that crosses the blood-brain barrier. I believe in the theory of viral persistence – that Covid or Covid fragments are still lingering in reservoirs in my body and brain wreaking havoc.

Even though we don't have any concrete signs it will happen, I still believe the new Labour government can do better. Which is why I wrote this op-ed recently for the BMJ about better collection of data on Covid prevalence.

Currently, the government shares infection data collected almost exclusively at hospitals, and this does not tell us much about covid's spread in the community. Unlike many countries, England doesn't even collect wastewater data.

The previous government placed all responsibility for preventing covid on the individual but refused to give us the tools to limit our own personal risk. We need this government to bring back a commitment to public health, starting with better data collection on covid prevalence in the community so that we can save lives, prevent disability, and maintain economic productivity. The moment demands courage and care.

I'm also working on analysing where funding for Long Covid has gone in the UK in the past couple of years. Open data from 360 Giving for about £20m of this funding suggests it peaked in 2021, and has been plummeting ever since. Also, there are real gaps in funding for awareness and prevention work. Nothing against wellness, nature, and breathwork, but we need to stop the spread of the virus and biomedical research into therapeutics.

Update: Further analysis of the National Institutes for Health Research funding, of £48m since 2020, reveals that it too is dropping off. And the government keeps citing this funding over and over again when asked what it is doing right now to research Long Covid.

We're hoping that some analysis of this can spark a dialogue about how philanthropy and government can work better together to respond to the mass-disabling event.

If you are interested in helping to gather interested people and institutions on this topic, please get in touch.

I was living in Lisbon during the 30th anniversary. And I'm sad to say that this blog post, that I wrote then as a Fulbright independent researcher, is still really valid. But the sense of societal amnesia is more acute, as a new centre-right government will enter Parliament along side a far-right party called Chega (Enough) that is very openly nostalgic for the values of Salazar.

The 30th anniversary of Portugal’s peaceful Carnation Revolution passed with little fanfare here in Lisbon. A couple of (late) fireworks, some good documentaries on television, and some casual bourgeois-mocking at bars. I was expecting more of an outpouring — my American sentimentalism perhaps. I admit, in general, I have become very frustrated to what I perceive is a willed, societal amnesia to the history of fascism in Portugal.

There is no doubt that when, on April 25, 1974, the Armed Forces Movement entered Lisbon peacefully (the tanks stopped at red lights and soldiers accepted red carnations from the well-wishing crowds), they brought with them a revolution. They put an end to one of the longest-running fascist political regimes ever in power, nearly 50 years.

The anniversary unfortunately was politicized. Apparently even the word “revolution” is too politically loaded for use in Portugal. Today, three decades later, the ruling party, the Social Democrats decided that the 25 April was to be known as an “evolution.” Subtract the “r,” it’s just one letter... Most Portuguese blame both sides of the political spectrum for this myopic vision of what was a euphoric, historic day for the nation. Obviously a revolution is not merely one day, it is a complicated process, and in the Portuguese case the revolution’s long-term legacy is ambiguous, and varies greatly depending on whom you talk to.

But the significance of April 25, 1974, was the immediate end of police repression, censorship and the African wars which were a long bloodletting for Portugal and its African colonies.

Unlike the African colonies, only in the year 2002 was Portuguese Timor formally decolonized — after Indonesia’s illegal annexation in 1975 and eventual devastating withdrawal in 1999. Through my research on late colonial Portuguese Timor, I have gained a clearer picture of what the Carnation Revolution meant on that faraway island at the time. It meant an enormous opening, the end of police repression, and the end of an inconsistent, hypocritical political order. It meant that Timorese were to take their fate into their own hands, whether they were ready or not.

My archival research has unearthed a wealth of material on pre-1974 Timor. Issues of race, discrimination, police repression and economic difficulties surprisingly come to life in the various governmental archives around Lisbon. The challenge, which I am now struggling with, is how to present the material in a way relevant to the present, and to two audiences, the Timorese and the Portuguese.

In 1974, Timor was a small, remote and extremely underdeveloped territory with 20 kilometers of paved roads. Portugal had managed to prevent serious political organization in the colony by limiting access to education and through the repression of Salazar’s secret police, the PIDE (“International Police for the Defense of the State”). Secret police monitored those from certain rural regions known for rebellion, along with those who spoke foreign languages, wrote too many letters or listened to the radio. Many Timorese were intimidated and detained by agents of the PIDE.

One Australian journalist visiting Timor in the 1960s, after being pursued by agent of the PIDE, the most “unsecret secret policeman,” wrote that in the abject poverty of the Dili Market, “No one laughed, or even smiled.” Upon his departure, he wondered, “Could it be that all the unsmiling people were asleep — or were they just dreaming?”

In the interior of Portugal, in a town in the Alentejo, I came across a photo exhibit of the working conditions of women in post-war Portugal. The photos — of “fish wives”, women in rice fields, women collecting firewood — reminded me of Timor. I began to realize that April 25 was also the end of a long, pastoral sleep for the Portuguese. The satirical weekly O Inimigo Publico (The Public Enemy) displayed on its “April 24” cover an illustration of the apparition of Dictator Salazar appearing like the Virgin Mary of Fátima, blessing his flock: a bunch of sleeping men next to five-liter jugs of wine.

If in Timor, newly-won independence can bring an end to third-world rates of illiteracy and poor health services (as did the revolution in Portugal), then I know the Timorese will definitely will have a lot to celebrate three decades from now — even, perhaps, with some much needed historical perspective.

You can explore the read the results of my research on Portuguese Timor on this page