Long COVID Activism

Living the Long Haul

I’m told I’m a Renaissance Woman. My long history working in AIDS – and especially the inspiration of many dear friends and comrades living with HIV – has encouraged me to stand up and speak out about my realities and frustrations of daily life with Long Covid, sharing some snippets from life as one of the 1 in 10 of us who do not clear COVID-19 symptoms in the first couple of weeks.

In 2020 I started to attend the newly formed NHS Long COVID Taskforce, and linked Roundtable meetings with the Health Ministers in charge of the UK’s response. In June 2021, the Taskforce was reformed to focus on the NHS 10-point plan on Long COVID and – alongside 5 other people living with, or recovering from, Long COVID – I was appointed to the formal role of Patient and Public Voice (PPV) partner. It’s a busy role, doing our best to listen to and represent diverse views (there are now over a million Brits living with LoCo) on the Taskforce which brings together leaders from all medical specialties, as well as policy leaders. I also sit on the Research sub-group, and the group focused on Information and Education.

I’m delighted that since my 1st vaccination (late March 2021) most of my debilitating LoCo symptoms have dissolved – but if I know anything from my AIDS activism, it’s that you cannot predict how this plays out in the long term so we need to remain watchful. And we also need to draw on the lived experiences of diverse experiences. I seem to have been an “early adopter” of this tiresome new condition, and am really grateful to fabulous journalists, and fine friends, whose insightful interview skills helped me to express some of what we were going through and learning in 2020 – including the many links I see to our early experiences of AIDS.

A Shot in The Arm Podcast, Living with Long Covid, (S03 Ep 11), 2 September 2020

Ben Plumley and I had the joys of working together in the earliest responses to AIDS in the 1980s and our global careers have weaved around each other ever since. From his glorious life in San Francisco, he quizzes me about our shared history and my strange new reality stranded in London with utterly frustrating #LongCovid symptoms, musing on what we have and have not learned from the extraordinary global responses to AIDS we have been a part of. And I’m still glowing that he calls me a Renaissance woman.

The Long-Haulers: when Covid-19 doesn’t go away, Don’t Shoot the Messenger, 23 August 2020

Super South African Journalist Rebecca Davis is known for her witty and incisive stories – as well as her brilliant book Self-Helpless. Her brilliant wife, producer of this great podcast, is – like me – on the long haul journey with C-19, and we have been sharing informal ideas for a while. I was so happy to find that they had paired me with brilliant South African Dr Francois Venter, whose insights on AIDS I have long admired. It was great to discover that – even though we’ve never chatted (about this) before, we are reaching very similar conclusions, from our very different places.

All Party Parliamentary Group on Coronavirus – giving oral evidence, 5 August 2020

My fabulous new friends in the Long Covid Support Group (20,400 members and rising) really had to twist my arm to give oral evidence to this APPG (All Party Parliamentary Group). I may be no stranger to talking in front of Parliamentarians (despite what APPG Chair Layla Moran thought…) but talking about my personal journey with this frustrating syndrome was much much tougher than I could have imagined. I’m much happier telling politicians what to say (as several will attest). I was so moved by the testimonies from my fellow “LoCo”s: Claire Hastie (who founded the support group) confronts the uncertainty of wondering whether she has a disability, and will be dependent on her fabulous children, after losing the use of her legs a couple of months ago after an initially “very mild” bout of COVID-19. The hugely impressive Dr Jake Suett talks with great courage about his battle for recognition of his own health needs – having acquired his infection in the line of duty, taking care of people early in the epidemic. Between us we did our best to tell the tales of the thousands of people we exchange ideas with on a daily basis. We called on government to scale up research to find out what is really going on in our bodies, for rehabilitation so that we can get back to living our lives as well as possible, and recognition of the strangeness of what we are going through.

Health and Social Care Committee, 8 Sept 2020 – call for more UK-led action, research, rehab & recognition for people with Long Covid

On August, members of the 23,000 strong Long Covid Facebook support group wrote to Rt Hon Jeremy Hunt, Chair of the UK’s Health and Social Care Committee, asking him to press for urgent action on many issues that make our lives harder, including the lack of research, services and rehab. We also called for a national Long Covid Taskforce to be established, with meaningful representation from those of living with Long Covid. Read the full letter here.

On 8 September, the Health Minister Matt Hancock was questioned by the committee & said a few fine words (the full committee link is in the header). One month on and we’re still waiting for any action….