According to an Institute of Medicine (IOM) report published in 2015, an "estimated 836,000 to 2.5 million Americans suffer from ME/CFS", but it states that "an estimated 84 to 91 percent have not been diagnosed". I’m not sure how anyone thinks they can accurately guess at the number of people afflicted by a disease for which it is so difficult to obtain a diagnosis. What logic or thought process led them to these numbers?
The truth about the epidemiology of ME/CFS is much worse than these estimates and likely has been for hundreds of years or since the disease began. This becomes obvious by looking at what we know and using simple logic to extrapolate from there. These are the logical steps:
1) We only hear from people who are diagnosed. How hard was it for you to get diagnosed? It took me about 7 years of constantly seeing doctors. I was told my symptoms would resolve themselves, or that nothing was actually wrong with me, or there was just no answer and nothing else to test for, or the famous "it was in my head and not a physical illness". How many people have the fortitude to keep going in the face of this, and for how long? It takes a very specific kind of person to be utterly relentless enough to continue pushing doctors to dig deeper and continue seeing new doctors for a second, third, fourth, fifth—and even more—opinion, all the while ignoring the blatant prejudice and disrespect constantly shown to them. Everything pushes ME/CFS patients to give up and try to either live with their "health problems" (what I called it for years) or kill themselves. What percentage of people out there with ME/CFS have the chutzpah to keep fighting for answers in spite of all of that? 10%? 5%? Less?.
(2) Of that small percentage of ME/CFS patients who are diagnosed, how many are lucky enough to remain mildly sick and not get worse, despite holding a job, taking care of kids, feeding themselves, feeding a family and doing all the myriad other things it takes to be an independent adult?
3) Of those who get diagnosed but become too sick to care for themselves, how many are lucky enough to have family or loved ones who will support them and take care of them? It’s worth noting that it’s much less likely that undiagnosed ME/CFS patients will have family/friends/loved ones who will be understanding enough to help them or take care of them. Even for diagnosed patients, there are few people in the world who have access to the care that is necessary to keep someone with severe ME/CFS alive. I know how lucky I am. It takes loved ones who are willing to give up their personal and professional lives, with enough money to pay for huge medical bills that aren’t covered by insurance, because we don’t have a "legitimate disease". That combination isn’t very common.
4) How many are willing or able to carry on emotionally, continuing to survive the horrifying "living death" that defines severe ME/CFS?
5) Of those who manage to get 1) a diagnosis and 2) are lucky enough to either not get worse (rare, especially if they are trying to maintain a healthy person’s workload, which is very common) or 3) have people in their lives willing and able to take care of them and 4) are emotionally able to carry on despite the incredible suffering ME/CFS inflicts, how many of this dwindling percentage are interested in or capable of using social media and finding the forums and social media pages, and how many are even capable of using computers (many ME/CFS patients are not able to)?
This is what it takes to be "seen" as an ME/CFS patient. The people on Facebook, Twitter, Phoenix Rising, Health Rising, Reddit, and other ME/CFS forums are the very tip of the iceberg. We only hear from people who make it through these five tiers. It’s likely that this is a very, very small percentage of ME/CFS patients.
What happens to the rest of the diagnosed/undiagnosed ME/CFS patients in the country/world? This is something no one talks about. If you just look at the facts, human nature and how our society functions, it suddenly becomes horrifying. The "lucky" ones maybe wind up in nursing homes or psych wards surrounded by noise, light, bright colors, food they can’t eat, confounded doctors and nurses and medicines and treatments that harm them. I can only imagine that most of these patients continue to get worse due to improper treatment until they die or descend into an even deeper abyss of severity and suffering, never to emerge again. But the paperwork involved to get Medicaid to pay for a nursing home is tremendous and something I can’t imagine an ME/CFS patient with any degree of severity managing without help. There must then be a great number of severe ME/CFS patients who are unable to find public housing and who wind up on the streets, getting worse and worse until they die a terrible death alone in a gutter somewhere. I believe this happens to a huge number of ME/CFS patients.
How many people are as sick as I am? Few of us are publicly known, but surely there are staggering numbers of people as sick as I am. It’s too easy to get this sick with ME/CFS which is usually a one-way street; An unavoidable downward spiral. Even if the IOM estimates are correct and one quarter of the "up to 2.5 million" are severely ill, that’s "up to" 625,000 severe ME/CFS patients just in the U.S.
I’ll ask again: what happens to all of us who don’t fit into these five tiers? A majority of my fellow severe ME/CFS patients have likely either killed themselves or will die alone somewhere; hundreds of thousands of us or more. We need the support of federal health agencies to fund research and care programs. We need ME/CFS wards to house and care for ME/CFS patients who don’t have anyone to take care of them or cater to their sensitivities properly. And yet they don’t exist. So many of us have just been left to die alone. In a crazy public care home. On the street. In a back alley. In a parking lot. In a ditch. And their deaths are not even recorded as being caused by ME/CFS. All of this will get inconceivably worse with Long COVID adding to the numbers.
Beyond this urgent humanitarian crisis, there is also the tragedy that if the truth of this suffering and these deaths were known, ME/CFS would be treated with much more respect and likely be funded adequately and patients treated properly by our country’s safety net.
We must not waver in our push for human rights. We must continue telling the world the truth at every opportunity and through all media. And we must continue to fund research as much as we possibly can. Because if we do, if we relentlessly continue this fight, one day soon the truth will come out. This truth will be a monumental scandal, bringing great shame to the world. It will send shock waves through the public and through government, and the wall of ignorance and prejudice that has suppressed us for so long will come crashing down. This will be our moment. We will rise from the darkness like illuminated ghosts. And we will finally be treated like human beings.