Llewellyn King: ‘Long COVID’s’ baffling sister
CFS vitim demonstrates for more research
WEST WARWICK, R.I.
“Long COVID’’ is the condition wherein people continue to experience symptoms for longer than usual after initially contracting COVID-19. Those symptoms are similar to the ones of another long-haul disease, Myalgic Encephalomyelitis, often called Chronic Fatigue Syndrome.
For a decade, in broadcasts and newspaper columns, I have been detailing the agony of those who suffer from ME/CFS. My word hopper isn’t filled with enough words to describe the abiding awfulness of this disease.
There are many sufferers, but how ME/CFS is contracted isn’t well understood. Over the years, research has been patchy. However, investigation at the National Institutes of Health has picked up and the disease now has measurable funding -- and it is taken seriously in a way it never was earlier. In fact, it has been identified since 1955, when the Royal Free Hospital, in London, had a major outbreak. The disease had certainly been around much longer.
In the mid-1980’s, there were two big cluster outbreaks in the United States -- one at Incline Village, on Lake Tahoe in Nevada, and the other in Lyndonville in northern New York. These led the Centers for Disease Control to name the disease “Chronic Fatigue Syndrome.”
The difficulty with ME/CFS is there are no biological markers. You can’t pop round to your local doctor and leave some blood and urine and, bingo! Bodily fluids yield no clues. That is why Harvard Medical School researcher Michael VanElzakker says the answer must lie in tissue.
ME/CFS patients suffer from exercise, noise and light intolerance, unrefreshing sleep, aching joints, brain fog and a variety of other awful symptoms. Many are bedridden for days, weeks, months and years.
In California, I visited a young man who had to leave college and was bedridden at his parents’ home. He couldn’t bear to be touched and communicated through sensors attached to his fingers.
In Maryland, I visited a teenage girl at her parents’ home. She had to wear sunglasses indoors and had to be propped up in a wheelchair during the brief time she could get out of bed each day.
In Rhode Island, I visited a young woman, who had a thriving career and social life in Texas, but now keeps company with her dogs at her parents’ home because she isn’t well enough to go out.
A friend in New York City weighs whether to go out to dinner (pre-pandemic) knowing that the exertion may cost her two days in bed.
I know a young man in Atlanta who can work, but he must take a cocktail of 20 pills to deal with his day.
Some ME/CFS sufferers get somewhat better. The instances of cure are few; of suicide, many.
Onset is often after exercise, and the first indications can be flu-like. Gradually, the horror of permanent, painful, lonely separation from the rest of the world dawns. Those without money or family support are in the most perilous condition.
Private groups -- among them the Open Medicine Foundation, the Solve ME/CFS Initiative, and ME Action -- have worked tirelessly to raise money and stimulate research. The debt owned them for their caring is immense. This has allowed dedicated researchers from Boston to Miami and from Los Angeles to Ontario to stay on the job when the government has been missing. Compared to other diseases, research on ME/CFS has been hugely underfunded.
Oved Amitay, chief executive officer of the Solve ME/CFS Initiative, says Long COVID gives researchers an opportunity to track the condition from onset and, importantly, to study its impact on the immune system – known to be compromised in ME/CFS. He is excited.
In December, Congress provided $1.5 billion in funding over four years for the NIH to support research into Long COVID. The ME/CFS research community is glad and somewhat anxious. I’m glad that there will be more money for research, which will spill into ME/CFS, and worried that years of endeavor, hard lessons learned and slow but hopeful progress will be washed away in a political roadshow full of flash.
Ever since I began following ME/CFS, people have stressed to me that more money is essential. But so are talented individuals and ideas.
Long COVID needs carefully thought-out proposals. If it is, in fact, a form of ME/CFS, it is a long sentence for innocent victims. I have received many emails from ME/CFS patients who pray nightly not to wake up in the morning. The disease is that awful.
Llewellyn King is executive producer and host of White House Chronicle, on PBS. His email is llewellynking1@gmail.com. He’s based in Rhode Island and Washington, D.C.
Brain imagining, comparing adolescents with CFS and healthy controls showing abnormal network activity in regions of the brain