Protesters So Ill, They Couldn’t Get Arrested

Gabriel San Emeterio, one of 50 or so protesters at the White House demanding more funding for treatment of and research into their condition, M.E./C.F.S., is H.I.V. positive, and San Emeterio told me that H.I.V. has been less onerous than this more obscure affliction.

M.E./C.F.S. (myalgic encephalomyelitis/chronic fatigue syndrome), a condition that’s often postviral and similar to what some long Covid sufferers appear to have, can be so debilitating that it leaves those who have it with a sense of desperation.

That wasn’t apparent as they picketed and chanted, some in wheelchairs or using canes, wearing red shirts with slogans like “Still sick, still fighting” and “Millions missing.”

They gave their best shot at civil disobedience, but instead of being arrested, they were largely ignored. A few news articles mentioned the protest, and the world moved on.

Protests can grab the attention of the world, invoking awe through stunning acts of bravery as protesters defy the authorities. Outside the White House, though, on a sunny, otherwise calm September day, the bravery was not easy to see unless you knew what these people were risking.

Over the next two weeks, many suffered a baffling hallmark of their illness: postexertional malaise or PEM, in which even minimal physical and cognitive effort can cause them to crash. It sharply restricts their already limited ability to do anything and intensifies their painful symptoms. Some long Covid patients also experience this.

PEM may be one reason M.E./C.F.S., and even long Covid, has been dismissed so often as a serious condition by many doctors.

Ordinarily, if we exert ourselves, we become more fit and healthy. Even 90-year-olds who start exercise programs see substantial benefits.

So when patients with PEM say effort exhausts them and even worsens their condition, they’re viewed with suspicion — medically and culturally. Their complaints don’t mesh with societal expectations that we should exhort ourselves to push through. We boast of working through sickness. We celebrate how grit can deliver results.

That might also be one reason that medical doctors have often been skeptical of M.E. and PEM. They had to push through 16- or even 24-hour shifts during hospital training. No wonder many of the (too few) scientists and doctors working on M.E. have family members with the disease.

Over decades, patients devised their own approach to the disease, figuring out that resting and pacing after a crash provided the best hope for regaining more of their already limited capabilities. Many also practice resting, sometimes for days, before an important activity, to enable them to function better. Early in the pandemic, many of them urged long Covid patients to stop, rest and pace. Many long Covid patients told me that advice allowed them to finally make sense of their condition.

For these patients, rest often means lying in darkened, quiet rooms, often in pain, and even going to the bathroom can be an ordeal.

Many told me that before they understood their illness, they pushed themselves because that’s how things worked for them before or because that’s what doctors advised them to do. But then they crashed so hard that they never fully recovered.

And that’s what those protesters were risking that day. How do you protest when the very act is a dire threat to what little ability you have left?

These activists wanted to follow the playbook that AIDS activists used years ago, escalating civil disobedience. First, they marched a bit in front of the White House. They chanted. Then they lay down in front of the White House fence, in violation of their permit.

Law enforcement officers casually chatted with one another on their bikes in the park across the street.

So the protesters decided to block an intersection a few hundred yards away and headed there in a slow, determined march, sometimes with support from family members. But the police sped past on their bikes, and by the time the protesters got there, the officers had already diverted traffic.

Undeterred, the protesters moved to a more centralized intersection. But again, by the time they could make their way there, traffic was already rerouted to a block north, with little inconvenience to motorists.

After about 30 minutes, a uniformed supervisor approached a representative of #MEAction, the group that organized the protest. What are you protesting, he asked, politely eyeing the group, many now lying in the street not just in protest but also because they couldn’t stand anymore. He clearly had never heard of myalgic encephalomyelitis and squinted at the demonstrators as the representative explained their cause. “How long will you be here?” the officer asked. “As long as it takes,” was the reply, “and we’re willing to get arrested.”

“OK,” he said and got back in a police car.

And the waiting resumed.

Nothing more happened; traffic kept getting directed around them, the way life has long moved around these patients, for years and for decades, as they suffered bedbound or homebound.

And soon, the protesters could stay no longer, so they left. In about a minute, traffic was flowing through that intersection as if nothing had happened.

And that’s when their true ordeal began.

Over the next two weeks, I watched many of them deteriorate from the effects of postexertional malaise.

I spoke with Therese Russo, who was on her couch because she was unable to stay vertical for long. The day before the protest, she had told me, with tears in her eyes, that she used to be a dancer, often doing four- to six-hour sessions. Then an episode of mononucleosis in college turned into M.E. After the protest, she said, she crashed so hard that even her thinking was impaired — one of the most devastating elements of the illness.

Before the protest, Russo spoke with energy, clarity and coherence about her hopes for treatment. Now, she struggled.

It was similar all around: The same people who had managed to travel to the protest and had been so lucid and animated spoke to me from their beds and couches in halting, short sentences, frequently losing words and their train of thought. This is the largely invisible part of their disease.

When I first met Emily Adams, another patient-activist, I was surprised by how upbeat she was. Depression is understandably common among these patients, given the severity of their illness, sometimes leading to suspicion it was the cause of their condition.

Indeed, Adams told me, she became profoundly depressed and even suicidal after a bout of viral illness in college turned into M.E. She said that with the help of therapy, she worked through her profound grief over the loss of her previous life, until she recovered sources of joy, even in the room she can rarely leave. She has plants that she tries to water herself, which she can do only on days she can stand up at all, with long periods of rest between lifting the water can. She joyfully showed me the shelves with her many plants, next to the sunny window.

Adams hadn’t given up on her plants or on life itself. And like all the protesters, she hadn’t given up on us: They believed society would come through, with treatments, means of prevention and maybe even a cure.

We need much more funding for M.E. research. Despite prepandemic estimates ranging from about one million to over two million sufferers, National Institutes of Health funding for M.E. research has been meager, now a mere $17 million per year after a recent increase — far less than that for many other illnesses with similar prevalence.

And despite growing recognition of a connection between M.E. and long Covid, N.I.H. funds for long Covid research cannot be used for studies of M.E.

Trials for treatments for either condition remain too few, the efforts too sluggish.

Many patients need more support now. Many can’t navigate the onerous disability application process, and many who do are denied anyway. Many have severe enough limitations that they struggle with basics of life, like shopping, laundry and even self-care, yet few receive external support, and they depend on overburdened family and loved ones.

We have to help these people, not just because postviral syndromes can strike anyone or because this research may unlock treatments for other illnesses but also out of respect for their extraordinary strength and perseverance.

On that September day, they showed up. Now the question is if we will.

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