Authors: Charlie McCone
Source: The Guardian
Hi. My name is Charlie, and long Covid has destroyed my life.
Before my “mild infection”, I was a healthy, fit 30-year-old, biking 10 miles a day with no prior health issues, the type of person the CDC says should bounce back after two weeks. Well, it’s been two years and I’ve yet to bounce back. I can’t work or leave the house, and I rely on my partner as a full-time caretaker. I still can’t breathe right. It is a living nightmare. Writing this piece would have taken me an evening before I was sick, but now this level of cognitive exertion takes an entire week to complete.
There are millions suffering through this every day, stuck in a twilight zone of never-ending debilitating symptoms for months, and now years, after infection. And with a reported 10-30% of infections leading to this condition, we are witnessing the greatest mass disabling event in human history – the scale of which demands the same “Operation Warp Speed” type of urgency that was given to acute Covid and the development of vaccines.
This is still a new disease, and it will take time to understand everything. However, research is quickly unraveling the disease process, and it is no longer a “complete mystery”. So while we can only push science so fast, here are my four questions about the treatment, support and prevention of long Covid.
1. Why don’t we have diagnostics yet for microclots?
“Great news – all your labs look normal” is the dreaded phrase long Covid patients hear repeatedly from their medical team, and often leads to a minimization and dismissal of their symptoms. Current clinical diagnostics have proven insufficient for the diagnosis and treatment of long Covid (along with other longstanding post viral illnesses such as ME/CFS). However, the latest research is developing dozens of new diagnostic methods that have identified explicit biological abnormalities in the long Covid disease process.
Among the most promising is the detection of amyloid microclots using fluorescence microscopes. In research studies so far, they have been detected in 100% of patients tested for them. This is a simple blood draw that could provide a critical biomarker for millions, and it has immediate implications for treatment. In fact, the process is so simple that patients are sneaking into labs after hours to have technicians run the test for them.
Why can’t long Covid clinics begin incorporating this simple lab draw into their suite of services? If you run a clinic and are reading this, email this link to your lab director right now, and ask them: “Can we run this test?” There is a good chance they will say yes.
When this research around microclots was published last summer, I was optimistic we’d have some form of treatment option by early 2022, or at least a new diagnostic. We can’t continue to go through this health crisis with significant scientific breakthroughs sitting on the shelf for six months and more without any attempt at replication, trial or action. We need to prioritize expediting these newly discovered diagnostics into the clinical setting now.
2. Why is there still no public health warning?
We’ve known for well over a year how prevalent and severe long Covid is, yet the public remains largely uninformed around its risk. While the likelihood of someone developing the condition after infection has ranged from 5% or 50% (a recent meta-analysis pins it to 20-30%, and 10% if vaccinated), the most conservative estimate still amounts to one in 20 people. A “medically rare event” is one in 1,000.
As the Mayo Clinic research team recently said, regardless of where the final number ends up, “this is a condition that is not rare.”
So why are we not warning the public? If public health institutions want to establish trust with the public, they need to be honest about what the science is telling us. Right now they are not – and their silence around long Covid can be described as misinformation around the risk of infection – which is no different than anti-vaccination misinformation around the risk of vaccines.
In addition, studies demonstrate informing the public about long Covid encourages them to follow public health guidelines, and reduces vaccine hesitancy.
So what’s going on?
Let me take a guess: it would be difficult to promote a policy of “endemic infection that resembles a mild seasonal flu” while simultaneously warning the public that one in 10 infected will go on to develop a chronic illness, regardless of infection severity. In other words, it doesn’t fit nicely with a strategy of unmitigated spread where we are “living with Covid”.
Any decision that ignores long Covid at the cost of a humming economy and “returning to normal” is not only immoral and craven, it’s severely flawed. Long Covid is already having a devastating impact on the economy: in the US, the most conservative estimates are that 1.6 million are already out of the workforce due to long Covid, and in the UK, a quarter of employers cite it as a leading reason for long-term absence.
So if we want folks to participate in a working economy and retain a normal way of life, we need to protect them by informing them about the risk of infection. It’s long overdue to acknowledge and count long Covid, and begin measuring this pandemic in deaths, hospitalizations and disability.
3. Why haven’t we started meaningful treatment trials for long Covid?
I am enrolled in the “Recover” trial led by the National Institutes of Health, and during the orientation, they informed me that “the first few years will be observational, and then we hope to begin considering treatments after that”.
Do we have time to wait two years or more until meaningful treatment trials begin for a disease that is affecting 10-30% of the globally infected population?
There are already dozens of promising case studies that have identified treatments in response to clear biological abnormalities: viral persistence, immune dysregulation, endothelial dysfunction, auto-antibodies, and the aforementioned microclots – all of which should have already prompted trials. This is where patients are genuinely confused. Lack of action doesn’t make sense economically, politically, or medically.
We have enough data and research on the disease process to begin fast-tracking small-scale trials today. Multi-year observational studies are not going to cut it. Patients continue to go to their doctors and share the promising case studies being published every month, and the only response is: “We need trials before we can consider this treatment.” OK, where are the trials?
4. What is the plan to support those who’ve lost their jobs & housing due to long Covid?
My short-term disability runs out soon, and I have no clue what I’m going to do – and I am fortunate enough to have a supportive job and family, good health insurance, and a team of doctors who understand the severity of this condition. Many are not so fortunate.
We know long Covid is destroying careers, pushing teachers and first responders into homelessness, and completely upending the financial security of families across the globe. Long-term disability is now being flooded and is denying benefits to the majority of patient applicants.
This is a disaster. Nobody asked for this condition, nor were they warned about its possibility, and now sufferers are being hung out to dry with no support from one of the greatest fallouts of this pandemic. We know pandemics disable people, and policymakers should have been prepared for this. What is the plan here?
So while we can only push the research so fast, that is not stopping us from addressing the most immediate needs of those suffering from long Covid or to protect others from developing the condition. It’s clear we’re waiting for our governments, medical and public health institutions, and the media, to catch up with the science.
What are we waiting for?