Millions Missing
The main #MillionsMissing event for this year is today. The Millions Missing campaign began in 2016 to advocate research and help for people who have myalgic encephalomyelitis (ME, dubbed Chronic Fatigue Syndrome in the States). Now it has expanded to include people who have Long COVID and other complex chronic illnesses associated with or triggered by infection.
It’s hard to design a campaign event for people among whom many are too unwell to attend it themselves. In many cases, patients are housebound or bedbound. Someone else has to act on their behalf to make it clear that they are unwillingly missing from routine social and working life.
The first year Millions Missing was held, patients were represented by empty pairs of shoes. This year patients able to do so have been decorating pillowcases for the big day. The biggest event this year is in Washington, DC with an art installation of rows of cots at the base of the Washington Monument. There will also be a press conference at 14:00 Eastern USA time.
Scale is Increasing Rapidly
Each person among the Millions Missing wants to be more active, more productive, than their illness allows. The shortage of labor that businesses keep complaining about? Millions Missing would like to step in, if only they could.
In the UK, the Office for National Statistics estimates that about 2 million of the country’s 68 million people had Long COVID as of early this year. Of those, 1.5 million had it bad enough to adversely affect daily activity. The most prominent age bracket is 35 to 69, so a prime working age range is most affected. The workforce on payroll in the UK is 30 million, so having at least 1.5 million impaired or mission is a significant proportion. This is on top of those partially or heavily disabled by ME/CFS. The usual UK prevalence figure for that is 250,000, but no one knows for sure.
Although recently the World Health Organization announced the end of the global public health emergency phase of the SARS-CoV-2 pandemic, WHO explicitly says the pandemic has not ended. WHO estimates that 1 in 10 infections with the virus (not 1 in 10 cases, not 1 in 10 people, with many people getting multiple infections which can be asymptomatic) results in long term health issues, and as a result hundreds of millions of people will need long term care.
Compassion and societal impact aside (a very large aside), even for an economist who only cares about money and productivity, this is a big deal. It is not mere coincidence that such media as The Economist, Fortune and the Financial Times are publishing more pointed articles than mass-market media about the need to reduce the prevalence of COVID, thereby reduce the prevalence of Long COVID, and find ways to treat people who have LC.
Money has noticed that sickness is impairing and disabling workers, thereby holding back profitability, and doing so at a much faster pace than ME. Money talks.
Are Clues to the Future in our Past?
WHO says SARS-CoV-2 is not going away. It’s still evolving, changing the ways it attacks. WHO says we need to learn to manage it alongside other infectious diseases.
We don’t sit back and let tuberculosis, polio, cholera, measles, HIV, etc. run rampant without doing anything to impede them. We also don’t manage them entirely with vaccines. That’s a huge clue from our past.
Knocking a pathogen back depends upon the pathogen. Dealing with potent pathogens often requires multiple layers of mitigations. For polio and measles, we mainly use vaccines. For tuberculosis, at first we could only segregate patients at sanitariums. Now, we use treatments and only try to keep TB patients out of the general population in extreme cases such as a drug-resistant strain or a patient who does not reliably take their medicine. For cholera, we built modern water supply systems with sanitation. For HIV, there is no vaccine so it’s a matter of safer sex, clean needles for drug users, screening of blood donations to prevent transmission in tranfusions or treatments derived from blood, and treatment for those who get infected.
SARS-CoV-2 has spawned more scientific research faster than anything else in our history. As always, some of it has been of high quality and some hasn’t. Among those producing high quality research, I see widespread agreement that for the time being we should be aggressively deploying non-pharmaceutical interventions (NPIs), not just vaccinating. NPIs include but are not limited to ventilation, HEPA air filters, Far-UVC (222 nm wavelength, filtering out other wavelengths), avoiding crowds and wearing high quality face masks in appropriate places.
We all know how that advice is being received, or more to the point widely ignored except in spaces frequented by the elite. Search Twitter for the hashtag #DavosSafe to glimpse how the most elite protected themselves at Davos. Here in the UK, Parliament installed air filtration for itself. Many British government facilities have done the same. British health care, shops and other private facilities used mainly by the rest of us have not. I notice, with envy, that although such mitigations are not common in the USA either, more dentists, doctors and even restaurants there are installing such features than here.
Who Is Affected, and How, Matters
There are built-in problems with ME and Long COVID about causation, treatment and patient profile.
Both illnesses affect far more women than men. This is similar to the profile for certain autoimmune diseases such as multiple sclerosis. Generally about 70% to 80% of the patients afflicted with these illnesses are women. Anything that disproportionately affects a stigmatized and/or disadvantaged group, in this instance women, routinely gets the short end of the stick for research funding, poor reception of research reports and often dismissal or even ridicule by the medical profession.
It’s hard to get such diseases taken seriously. Multiple sclerosis was officially female hysteria until evidence of physiological damage to the central nervous system became impossible to ignore, as an example. When Congress specifically earmarked a few million for research into CFS, the CDC redirected that money to measles. That violation of the Congressional mandate only came to light because of a whistleblower.
Access to resources also comes into play at an individual level. Think about the financial burden of being stricken with a disabling illness. In both of my countries, on average women have less disposable income than men, and gay men have the most.
When we pivot to looking at HIV and AIDS for historical clues to what is coming, both that resource disparity and differences in the nature of the illness matter profoundly.
Medical researchers have developed ways of assessing the quality of life for patients. We could spend an entire post on the strengths and weaknesses of such studies, but in essence the quality of life for an “average” AIDS patient before current treatments came along did not fall to the level of an “average” ME/CFS patient until the last two months of the AIDS patient’s life.
When research into AIDS progressed enough to show what was going on, gay men had both the financial resources and physical capability needed to organize and agitate. They knew their HIV status for years before it made them too sick for activism. They could exert pressure on governments and research funders to work toward something that would help. So they did, very effectively. Eventually current treatments emerged as a result. (I don’t mean this to sound trite, easy or simple. It hasn’t been. But they were clever, brave, persistent and ultimately successful at getting treatments developed.)
That couldn’t happen for ME/CFS. The patients are too sick. Practically everything they’ve got goes into just getting by.
The same thing is happening with Long COVID. Up to half of LC patients are being labeled as now fitting the diagnosis of ME/CFS. Many, including doctors who have LC from their exposure at work earlier in the pandemic, report that their colleagues are dismissive about their symptoms and try to say it’s all psychological rather than physiological (a problem ME/CFS patients repeatedly encounter).
Past is Not Prologue
This is at least the third major global epidemic or pandemic among humans in the past 50 years. In other words, it’s at least our third round that is easily within living memory. We can draw some clues from the earlier two, but this one is not like either of them.
As the financial media have begun to figure out and say directly, Long COVID threatens everything. Researchers are working frantically to develop all manner of tools that could help: wearable devices that can detect the onset of illness, a breathalyzer test to detect infection, broader-spectrum longer lasting vaccines (ideally to prevent infection) and therapeutic medications that not only reduce severity but also reduce the chance of developing LC.
All of that is still in the works, though. For the time being, the best way to not get any deeper into trouble is to not catch COVID, or if you’ve had it, not catch it again. Much of Asia seems to take that seriously. Asians often wear face masks, for example. But in Europe, North America and some other places, the virus has free rein.
We are just beginning to see what that will mean if we continue on this path.
This virus spreads much more easily than HIV, and it leaves behind damage that resembles a combination of the worst of HIV and the worse of ME/CFS. The brain damage it causes isn’t identical to ME/CFS, but has significant overlap. The immune system damage, especially to T-cells, highly resembles the damage caused by HIV.
If you have been paying attention to studies, the effects are starting to be evident.
We see delayed effects of damage caused by the virus to a variety of organs, such as the cardiovascular system, liver, kidneys and pancreas. If you have wondered why there seem to be more heart attacks, strokes, hepatitis, kidney disease and diabetes than there should be, that’s why.
We see widespread brain injury: cognitive decline, impaired memory, dementia, emotional volatility, skewed decision making, even personality changes. That’s from the brain damage so well documented by the UK biobank brain scan study.
We see much more illness of many other types, and it frequently presents worse than it used to: strep, RSV, cancer (the virus appears to be oncogenic), reactivation of endemic viruses that normally stay latent after the initial illness (Epstein-Barr, herpes zoster causing shingles)… It’s a long list, as though anything can can take advantage of impaired immune systems is doing exactly that.
That last portion is the sleeping giant. Remember how it went with HIV before reasonably effective treatments? The initial acute phase seemed no worse than a bad case of flu. After it was over, people went about their lives unaware that their immune systems were gradually failing. As that progressed, other diseases took advantage and that’s what was fatal.
HIV is nearly 100% efficient at wreaking that havoc on everyone it infects. SARS-CoV-2 appears not to be so efficient about it, but we haven’t pinned that down yet. We do know that when it attacks the immune system, it does so in ways that resemble HIV’s damage. It plants a time bomb. The fuse seems to be more erratic and unpredictable than the fuse in AIDS.
#MillionsMissing used to be a campaign for research to help people with a disabling illness reclaim their ability to participate more fully in society. Nobody wants to have to campaign for more than that. Isn’t that a big enough ask?
But Long COVID patients who have become part of the Millions Missing are like canaries in a coal mine. LC patients are a window into the future as more infections occur and more time bombs explode. As the WHO says, the more infections occur, the more people there will be with Long COVID. That growth curve is much faster than for ME/CFS.
Please listen to the Millions Missing today. They aren’t just asking for help for themselves. They are asking for help to keep all those future patients from landing in the same dark place.