Ely's Long Covid Disability Roulette

The Washington Post put out a free article about a new study that defines long Covid. They identify 12 key symptoms to create a common language on this. The symptoms are attached to point with the general idea that the more points, the worse the ability to carry out everyday activities:

They don't explain why loss of smell/taste has the most points, but I'll hazard a guess that it's a strong indication of brain damage! 

Then Wes Ely MD wrote an article about our current game of Long Covid "Disability Roulette" in the Boston Globe that starts like this:

"While society yawns, impatient to move on from the Covid-19 pandemic, Americans still play disability roulette. About 1 in 10 of the 1010,000 people who catch Covid this week in the United States, many for a second or third time, will be left lastingly ill. Even some vaccinated people; even some young, previously healthy people, after only mild cases." 

And then he wrote this thread:

* No longer a mass Death event
* Covid-19 is an ongoing mass Disability event
* You and I might get Long Covid
* But society is yawning

This tread unpacks science, policy, and hope. 

He highlighted some parts of his article:

Covid-19 is an ongoing mass disability event. Every seven days, 25,000 more people join the 10 million in our country suffering memory loss, heart problems, dizziness, extreme fatigue, and more owing to the virus. . . . In a recent study from Sweden following long Covid patients out to two years, more than 80% of 185 people who met the diagnosis of long Covid at four months (and 1 in 3 of the total 460 Covid-19 patients tracked) still had ongoing cognitive, muscle, and fatigue symptoms affecting everyday life at two years. . . . Many can't return to work because of cognitive or physical impairments. they are losing hope. Some of them $5 billion President Biden wants to spend on "NextGen" Covid research should. be earmarked to help them. . . . Take Trinity Peacock, a 20-year-old student from Atlanta. She spoke to me in my office about how a super-spreader family funeral in 2021 left several of her loved ones with long Covid. 'My family has been offered no support in any way. No therapy, no compensation,' she told me. 'The Covid convo has died down while we are left to suffer.' It's been two years, and multiple people in her family have ongoing problems with long Covid. . . . 

Thanks to Covid-19 patient-led research and activism, early notions about how to treat long Covid are emerging. . . . Yet society at large just doesn't seem to care. . . . Science doesn't validate injury. People do that, or they don't. . . . Long Covid patients are the experts. They need clinics, support groups, and robust trials, as quickly as possible. They need safe and effective treatments and rehabilitation strategies. It needs to be easier for patients to get disability services and funding without navigating a maze of dead ends. . . . As an ICU physician, I've had a front-row seat to the heartbreak of the past three years. Two years ago, all but two of my patients were on ventilators with Covid-19. This week, I've had just two patients with the virus. Some of the mooted $5 billion successor to Warp Speed, Project NextGen, should be earmarked to develop treatments for long Covid, because it's a public health disaster hiding in plain sight.

Then he added the studies:  

The heartbreak we see has scientists working to discover answers. Drs. @VirusesImmunity and @PutrinoLab explore hypotheses around viral persistence, vital reactivation, autoimmunity, and inflammation, testing antivirals, immune modulators, blood thinners (Lancet, February 2023). Data from 223 unvaxxed mild/moderate covid survivors show abnormal MRI white matter inflammation at nine months vs. matched controls; prolonged cellular changes occur, and we don't yet know the significance; and clinical outcomes vary strikingly across studies (PNAS, May 2023). Brain inflammation in other types of dementia is often present years before memory and executive dysfunction deficits appear. Don't be complacent or assume long Covid is safe for peoples' brains. It's precarious! I covered this haunting brain sciences in a previous thread. Dr. Eric Topal tackles important new Covid-19 brain data beautifully. Topol warns us, "Recall post-polio syndrome appears 15-30 years after polio - a leading theory is viral persistence." Read his new substack here. 

Covid survivors who died of non-covid causes (N=20): In autopsies, 60% had "enormous amounts of Spike Protein" in their skull, meninges and brain not seen in controls, with similar findings in the skull and brain of mice. Vaccines weren't studied (bioRxiv, April 2023).

It is highly curious how these problems occurred in 'neck-up' skull-meninges-brain structures. Think again of long-term implications of this virus. When over 200 symptoms/signs occur in LongCovid after even mild infection, direct and indirect viral causes are at play. 

We are sorting out risk factors for long Covid. E.g. obesity dampens the initial immune response to Covid. Patients with high BMI have less expression of IFN and TNF, leptin resistance is reduced. Could this allow ongoing viral replication and worse long Covid? (National Library of Medicine, March 2023). More direction comes from over 200,000 Medicare patients using narrow and broad definitions of long Covid; risk factors found included hypertension, chronic lung disease, obesity, diabetes, and depression. The time between initial Covid and long Covid was about eight months (Health Affairs, March 2023). 

How 'long' is long Covid? A Swedish study found 85% of people with long Covid at four months still had cognitive, muscle, and fatigue problems at two years. Of those unable to work at four months due to long Covid, about 50% were unable to work at two years. There are massive implication if this plays out globally (Lancet, May 2023). Using a new 'Scorecard for PASC'; for research purposes, which is not validated for clinical diagnostic use, of N=9,764 patients, 10% of patients had PASC at six months. Covid reinfections increased long Covid risk! (JAMA, May 2023 [the study mentioned up at the beginning]). Each week about 25,000 people join the over 10 million in the U.S. (over 65 million worldwide) suffering memory loss, heart problems, dizziness, extreme fatigue, sexual dysfunction, etc. Consistent data shows about 10-12% of people develop long covid after acute Covid, which increases with repeat infections and if unvaccinated (Lancet, August 2022). 

How bad is long Covid? In a study of 536 long Covid in wave 1 or 2 patients, 87% never hospitalized, found single and multiple organ impairment at six months in 69% and 23% respectively. At one-year, it was the same with 59% and 27% affected (Sage Journals, February 2023). Crazy stuff not to be taken lightly. Long Covid is a public health disaster hiding in plain sight. People are losing hope. Some of POTUS's $5 billion successor to Warp Speed, Project NextGen, should be earmarked to develop treatments for long Covid. An NIH-sponsored study of 825 patients in 44 centers found 56% of previously hospitalized Covid survivors struggled to pay bills at six months due to ongoing health problems. Even bathing and preparing meals was hard. Quality of life diminished. 

Ongoing brain problems are a plague in patients with long Covid. The brain reveals loss of supportive cells called glial cells, and death of neurons. Early dementia-like signs in too many long Covid patients, even those who had mild symptoms during initial Covid. Society just doesn't seem to care about longCovid. The $1 billion earmarked for long Covid research has yielded precious little. Mental and bureaucratic wranglings have stalled study teams. Long Covid communities are beyond frustrated by delays. Science doesn't validate injury. People do that, or they don't. A recent NEJM piece on "Facing the New Covid-19 Reality" did not even mention long Covid. Government and policy makers operationalize actual relief...or they don't. 

Vaccines - a few words please... Importantly, there is an entity of vaccine-injury that looks very much like long Covid. It's real. It's very rare compared to Covid-induced viral injury. And it's heartbreaking. Still, the 20% in the US who have a full series of shots including bivalent boosters are 14 times less likely to die than unvaccinated and three times less than those who only got the original series. 

My hopes: Patients living with long Covid are the experts -- LISTEN to them. Let's find answers through hard-core science. A new AHRQ network is a start to make it easier for patients to get treatment, disability services, support groups.