COVID-19 is not simply a binary threat of life or death: the third outcome is a spectrum of post-viral symptoms seriously affecting even young survivors’ abilities to work, study and parent.
A year ago, I wrote about how the growing clamour around Long COVID might grant an opportunity for severely disabling energy-limiting chronic illnesses to be taken seriously for the first time in 50 years. Instead we are watching the medical gaslighting we have been suffering for decades going to the next level, as governments prepare to rebrand the sidestepping of their responsibilities once again and force us to shield forever.
As the arrogant science-ignoring antics of Bolsanaro, Trump, Modi, Johnson et al will condemn millions more to unnecessary painful disability, on behalf of future Long COVID victims as well as people with ME everywhere, I am begging ME and Long COVID associations globally to convene an online conference as a matter of urgency to commit to the following:
- The absolute imperative of speaking truth to power loud and clearly, worldwide: one consistent message with one unified voice.
- As most personnel are energy-compromised, the urgent drawing up of division of labour. Each major association to take on one vital role, commensurate with their funding/capacity, to provide the following priorities:
- A PR team with an emphasis on positive messaging but with capacity to robustly respond to the slew of misinformation and glaring omissions concerning Long COVID and ME. A proactive media campaign focusing on facts, a diverse international spokesteam and esteemed allies to amplify.
- A science team to provide solid sound-bites from decades of peer-reviewed evidence, research updates and a roster of scientists available for interviews.
- A clinicians team to issue non-harmful treatment guidelines that can be swiftly disseminated directly via social media as well as to clinics worldwide.
- A lobbying team with strategies to approach the WHO, governments and medical authorities to press for urgent policy change and increased research funding.
- A patient-led definition of our illness which exposes the full spectrum of its severity, still largely sidelined even within our own community.
- Solidarity with sister syndromes and acknowledgement of the need for an umbrella approach to all energy-limiting chronic illnesses.
- A manifesto of our demands, from tele-health portals to informed physicians and hospital quiet/dark rooms; inclusive education, expanded employment accommodations and sofas in supermarkets; full disability recognition and social benefits plus support for our carers.
- A global committee to speak for us with representative organisations and activists from as many countries (or at least continents) as possible – not just the US, UK, Europe, Scandinavia, Australia and Canada but also from nations across Africa, the Middle East, Asia and South America. And in the spirit of ‘nothing about us, without us’, a way for longhaul sufferers to register for online voting on our needs and priorities, which will lend legitimacy to this global union, and provide stats on our ages, locations and levels of severity.
Even the most conservative estimate puts 10% of COVID survivors dealing with crippling post-viral debilitation; Dr Anthony Fauci has stated that between 25-35% are experiencing lingering effects. With between 20-70 million people already dragged into the quicksand of our existence over the last 15 months, the time has come to put polite requests for acknowledgement aside. We must insist that the numbers of Long COVID sufferers are tallied in official statistics alongside cases and deaths.
Big Lies continue to hold sway when the vulnerable continue to engage in time and energy-wasting vested-industry-generated fake debate (‘cigarettes are not harmful,’ ‘climate change doesn’t exist’, ‘post-viral illness is all in your head’). We must move decisively ahead of the propaganda and mobilise a clarion call for action and accountability, because more than anyone, we know that Silence = Living Death. The chronic illness community owe it to the future permanently bedridden to come together, pool resources and get organised.
We can’t set the pace, but we can set the agenda.
30 years’ longhaul, now 70% bedbound post-Africa Clockwise
I am too unwell to keep up to date with ME organisations/advocates and Long COVID groups globally, so pwME please help by sharing and supplementing the following nominations in the comments:
PR team: ME Action US with David Tuller, ME Action UK with Valerie Eliot Smith.
Spokesteam: Jen Brea Severe: Merryn Crofts’ mother Clare Norton, Whitney Dafoe, Jehan ‘Gigi’ Joseph-Garrison, Nevra Liz Ahmet, Jenny Rowbory (Stroopwaffle) Anil van der Zee, Naomi Whittingham, Ketra Wooding, Jamison Hill Moderate/Severe: Wilhelmina Jenkins, Jessica Taylor-Bearman, Rivka Solomon, Ben H Moderate: Laura Elliott, Lorna McFindy, Kaitlyn Blythe, Ashanti Daniel, Jane Colby, Ryan Prior, Long COVID: Fiona Lowenstein
Science team: Jaime Seltzer, Open Medicine Foundation, Ron Davis, Tom Kindlon, Cort Johnson, Keith Geraghty, Nancy Klimas
Clinicians: Doctors With ME, Physios For ME
Lobbying: Jenny Spotila, Carol Monaghan SNP MP
Patient-led: Chronic Illness Inclusion Project, Phoenix Rising
Solidarity: EDS, POTS, MCAS, Fibromyalgia, Lyme, Lupus and all ELCI
Manifesto: Brianne Benness #NEISVoid, Phoenix Rising
Allies: George Monbiot, Carole Cadwalladr, Luke Harding, Haji Mohamed Dawjee, Dr Frances Ryan, The Disability Enthusiast, The Chronic Iconic