Thread by @UnwantedGuest3

700 days post “mild” covid infection: Persistent tinnitus, headache, de-realisation, agonising costochondritis, dysfunctional breathing, joint / muscle pain, insomnia, post exertional malaise, exhaustion, gastro-intestinal issues (colitis, reflux, nausea)… a horror journey. 1/9

What have I learnt? Chronic illness is utterly shit. It is all encompassing, insidious, pervasive. It is scandalously ignored by research, media, funding and political will. It can lose you your friends, your family and your job. It leaves you alone, vulnerable and terrified 2/9

Public health messaging on covid HAS to shift to include the zombie state #longcovid sufferers inhabit. Shift from the damaging binary survivor / deaths narrative. People need to be informed of the consequences for 10-30% of people who contract covid. It’s a govt duty of care 3/9

There is no magic bullet for #longcovid. The medical community is as stumped as sufferers. Some things provide relief for some people but we are 2yrs in and there is still no cure. Diagnostic / therapeutic tools don’t exist and / or are slowly catching up. But not at scale. 4/9

Worse still some people don’t even believe #longcovid exists. And these people - within the medical community - are the ones that we need the most. Advocating for your own health when you are sick is exhausting and damaging. Trust me. 5/9

Sufferers talk about #longcovid. A lot. Because it is horrible. But also because we are incredulous at how laissez-faire the govt appears to be on what is effectively a mass disabling event. We talk about it because we don’t want you, your family to go through this shit show. 6/9

Lastly it is not all doom and gloom. There’s some great research into what is driving #longcovid which WILL benefit all chronic illness sufferers. There’s some encouraging trials this year into therapeutics to help deal with fatigue, cognitive issues and PEM. 7/9

The ONS is doing great work on measuring the prevalence of #longcovid in U.K. (if you are not measuring it, you are not managing it). And there is strong evidence that vaccination significantly reduces the risk of Long Covid. 8/9

And on a personal note, despite all the ongoing symptoms and challenges I am feeling better than I did a year ago. The timescale is glacial but the trajectory is overall positive. It gives me hope. Perhaps we can all have hope. FIN