#LonghaulersUnite

This is a call for all Long COVID-19 and chronic illness sufferers to come together to make our voices heard. A rallying cry for those too weak to march and protest. A covenant for those physically unable to stand up for our rights.

On 9th July, Director of National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force, Dr Anthony Fauci commented that an emerging pattern of extended COVID-19 symptoms is “highly suggestive” of Myalgic Encephalomyelitis. For months, people with ME and ME activist associations have been publicly expressing concern that health authorities are not prepared for the avalanche of post-viral effects about to come crashing down on the lives of millions of patients across the world (see the Washington Post).

Groups of long-term COVID-19 patients across Europe and the US have been gathering on social media to compare notes on a frightening array of fluctuating symptoms and the medical profession’s unwillingness to engage with them about it (see The Atlantic). They are aghast to still be riding a rollercoaster of fever, chest pain and heart palpitations, headaches and muscle pain, gastrointestinal and sleep disturbance, cognitive problems and debilitating fatigue – weeks and months after official guidelines suggest COVID should be over (around 2 weeks) and when all their tests keep coming back ‘normal’.

It is estimated that at least 10% of all COVID-19 sufferers are being affected in this way (see The Guardian). Many of them were considered relatively mild cases, and are relatively young. 26 year old Fiona Lowenstein, who told her story in the New York Times, founded a Slack group for long-haul sufferers now numbering in the tens of thousands. There are five times as many members of the Survivor Corps Facebook group, many of whom, like several #AprèsJ20 groups in France and sufferers in UK, are reporting a slew of post-viral complications in longhaulers.

Welcome to our world.

For millions of people with ME and other chronic comorbidities (EDS, POTS, MCAS, Fibromyalgia, Lyme disease, Lupus etc) this has been our lives for years. We are hobbled less by the ball and chain of our pain as by the Sisyphean boulder of our exhaustion; just getting through each day is a marathon of endurance.

I know about long haul. For the last 6 years, my family trekked through 38 countries around Africa Clockwise in a 10 ton truck running on waste vegetable oil, sourcing it from hotels en route. Over 47000 km, we battled extreme weather and appalling roads, breaking down 26 times. To say we travelled at a snail’s pace would be an exaggeration. In the last year alone we spent 146 days living in garages enduring 3 engine rebuilds (see Carte Blanche TV).

But I wouldn’t count any of this as long haul compared to the years I spent in a darkened room in my early twenties suffering from severe ME. I fell ill in August 1992 aged 22, having contracted giardiasis less than a year after glandular fever, setting off a cascade of symptoms that have waxed and waned ever since but never relented. For 6 years I couldn’t work; for 2 years I scarcely got out of bed. At times, my parents had to bath and feed me. People with very severe ME don’t even have enough energy to swallow and have to be tubefed. Having another person in the room triggers agonising symptoms. Their pain is unimaginable.

When Professor of Infectious Diseases Dr Paul Garner described his 7 week COVID “hell” in the Guardian, his list of long-tail symptoms sounded exactly what living with moderate ME feels like. I currently have all the symptoms listed at 30 secs on this Long Covid SOS video daily, except for the cough.

For a month in Cote d’Ivoire in 2014, I had malaria and typhoid at the same time and it was a breeze in comparison. With malaria and typhoid you either get better or you die – the suffering does not go on infinitely. Crucially, there is acknowledgement of the gravity, well-funded research and effective medication for both of those diseases.

On the other hand, since the 70s, ME has been dismissed as a ‘conversion’ ‘functional’ or ‘somatisation’ disorder, ‘women’s problems’, anxiety/stress or all three: ‘hysteria’. A group of influential psychiatrists have made a career out of insisting our symptoms are all in our heads, ignoring the vast literature documenting their organic basis. This has been enormously convenient to governments and the medical insurance industry, who have pocketed a fortune denying social security benefits and the financial support due to those disabled by energy-limiting chronic illness (ELCI) . (See my August 2018 blog M.E. Too detailing the history of Myalgic Encephalomyelitis.)

Slowly but surely, hundreds of thousands of people are realising that they are never going to recover from COVID-19, but now have a chronic post-viral condition that is going to affect their capacity to work, study and parent. Be assured that medical insurers across the globe are already mobilising to avoid covering the cost implications. Governments at risk from class action suits claiming criminal neglect of their duty to protect will be doing the same. Those most unable to fight for their rights are going to have an epic battle on their hands.

Legendary lifelong civil rights activist John Lewis died last week. He was one of the original Freedom Riders, marched alongside Martin Luther King at Selma and famously advised “Never be afraid to make some noise, and get in some good trouble, necessary trouble.”

This week I watched Crip Camp, a brilliant documentary charting how a 60s summer camp birthed the disability rights movement of the 70s which led to the Americans with Disabilities Act of 1990. During the first militant protest in 1977 when the Disabled In Action spontaneously occupied a government building, the Black Panthers provided them with hot food every day for a month.

Such solidarity is vital.

In 2011, incensed at the ignorant racism of white feminists, Flavia Dzodan seethed “My feminism will be intersectional, or it will be bullshit.” Germaine Greer and JK Rowling have discredited themselves demonstrating that feminists who exclude trans women from their struggle are perpetuating the hierarchy of the patriarchy. ‘Healthy’ disabled people who, in the face of an ableist infrastructure, understandably insist that disability is not sickness but merely the state of being overlooked, may ironically be perpetuating the marginalisation of the chronically ill.*

Invisible illness is the last great frontier for freedom fighters.** Because, unlike our BIPOC/BAME/historically disadvantaged, LGBTQIA+ and ‘healthy’ disabled brethren, the chronically energy-impaired are physically unable to protest. Most of us are unable to get out of bed. Most of this year, I have had to plan ahead to muster up the energy to cut my toenails.

So how can the chronically sick start mobilising now to prepare for the inevitable struggle ahead?

1) Virtually stand together: ME sufferers’ cumulative experience is a huge online resource that the growing long-tail COVID-19 cohort can call on. Finally we have something valuable to contribute to society: we’re experts at this! We live in lockdown. Social distancing is what we do to survive. Isolation is our normal.

We can share both physical pacing and mental coping strategies – for combating yo-yo boom and bust energy cycles, for diet and sleep management, for dealing with disbelieving doctors and family members. Most importantly, we can help Long COVID sufferers avoid potentially devastating and detrimental medical advice and therapies that could reduce them to wheelchairs or worse. #LonghaulersUnite

2) Create a Chronic/COVID Coalition: In the spirit of ‘Nothing about us without us’, the chronically ill community should nominate a global group of 30+ trusted ambassadors to represent us, alongside Long COVID groups, ME associations and scientific experts like Ron Davis from the Open Medicine Foundation etc. With Merryn Croft‘s mother’s words ringing in our ears (“what other illness gives the least attention to the worst affected?”) longstanding activists should be chosen with an emphasis on including the views of the most severe – only then will the true risk of ignoring their voices be weighed. Please post your nominations in the comments or Twitter thread.

3) Lobby medical authorities such as WHO, CDC and NIH (USA), NHS and NICE (UK) or Dept of Health in each country:
– to acknowledge the existence of longtail COVID-19 as another disabling post-viral syndrome
– to end dangerous recommendations for Graded Exercise Therapy for newly diagnosed people with ME (NICE has already discontinued recommendations of GET for Long COVID)
– to release more urgent research funding to pursue overlaps now.

4) Recruit a faithful band of allies: Call on carers of Long Covid sufferers to step up and add their voices to the chorus of chronic illness survivors and supporters who have been calling into the void for decades. If each new patient can persuade one other person to act on their behalf, stand in their Millions Missing shoes and march in their name, post-pandemic we could finally be a force to be reckoned with. #LonghaulersUnite

5) Plan for direct actions: some ideas – please feel free to add yours.
– Allies stage not sit-ins but lie-ins at key government/medical insurers offices to represent the predicament of the post-viral worldwide, with mattresses blocking office workers’ movements as they block ours.
– Allies obstruct entrances with placards bearing a giant PAUSE sign (II), symbolising solidarity with all those invisible individuals with Invisible Illness whose lives are permanently on hold due to the inability of authorities to even imagine their plight.
– In the midst of the AIDS pandemic, ACT UP activists chose the motto Silence = Death but for us Silence = Living Death. Allies could march as a Zombie Army all wearing white with black mask-covered mouths to express how Longhaulers are silenced by a lack of energy to protest. Allies are The Living Dead Walking, holding up their phones with images of the housebound and bedridden loved ones they represent.

Over the course of this pandemic, as the rest of the world got a taste of our lifestyle, astonishing advances in empathy took place. Remote medical consultations, working arrangements, online education and entertainment opportunities denied to us for decades became available within weeks.

Real change is enabled when allies stand up for others’ rights: when white people take a knee alongside black people; when straight people vote for gay marriage; when cis people march for trans rights. Because none of us are free until we are all free; none of us have dignity until we all have dignity; none of us are safe until we are all safe.

Chronically ill people need healthy people to protest for them, because – as the pandemic has so brutally demonstrated – none of us are well until we are all well. Most other minorities are ‘born this way‘, but absolutely anyone can become chronically ill – overnight.

Sam Pearce is an Oxford graduate with a Masters in Diversity Studies from the University of Cape Town, and a PhD in Persistence from the School of Chronic Illness: Acute 1992-93, Severe 1994-5, Moderate 1996-98, Mild 1999-2011, Moderate 2012-2017, Severe/Moderate 2018-20. Contact her for chronic illness coaching online.

* Chronically ill people who reject their condition being dismissed by medical authorities as caused by anxiety or depression must nevertheless strive to stand in solidarity with those incapacitated by mental health issues. No disabling condition should carry a stigma. All of us have a right to be respected and live the fullest lives possible within our limitations.

** apart from speaking up for other silently suffering creatures or Mother Nature herself of course…