For more than a decade I have been advocating for the sufferers of Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. It is an enigmatic disease that sentences its victims to a lifetime of suffering.
ME/CFS varies in intensity from the truly awful to the just ghastly. The symptoms are fatigue that isn’t refreshed with sleep, post-exercise malaise and everything from excruciating joint pain and severe headaches to light and sound intolerance.
Doctors have difficulty diagnosing the disease and can do little, if anything, to help their patients. Many believe ME/CFS is triggered by a viral infection, but that isn’t certain.
The victims live a separate life among the well, as though under glass, hidden in plain sight. They look fine but need constant care and help. Despair is part of the package; suicide rates are high.
Now the battle for ME/CFS sufferers is joined by Long Covid sufferers, people who are experiencing long-term effects from their Covid-19 infection.
Congress has appropriated $1.15 billion for the National Institutes of Health to study Long Covid, which may afflict one-quarter to one-third of Americans who have had Covid-19 — even mild Covid-19. Numbers are hard to come by, but Long Covid has multiplied many times those suffering from symptoms almost indistinguishable from those of ME/CFS, though, in most cases, less severe.
At least there is more research activity than heretofore, giving ME/CFS patients and their advocates a new glimmer of hope.
ME/CFS patients often suffer alone, deserted by friends, lovers and spouses and shunned by their families. They can’t cope with the caregiving or believe the patients are malingering — especially true for men and boys in families where “real men” are prized. There is cruelty mixed in with suffering.
Patients vary from being bedridden — for days, weeks and months to years — to oh-so-carefully restricting their activity; an evening out with friends can result in days in bed. I have seen that often.
Over the years, I have been in the sick rooms and interviewed dozens of sufferers, many of them for ME/CFS Alert, a YouTube channel that I created in 2011 with Deborah Waroff, a ME/CFS patient friend. The mission of ME/CFS Alert — there are now 131 episodes — is to spread comfort and information to the community of patients, caregivers and doctors.
The challenge for patients is to get through the day, to hurt less and to keep hoping for a cure. Some are excluded from many activities because they are sensitive to sound or light, others are connected to the world only through the internet. Pets and little routines help.
So it was with joy that I learned that Lloyd Kelly, a Tai Chi practitioner who lives in Louisville, Kentucky, is helping ME/CFS and Long Covid patients with gentle, untaxing Tai Chi, the ancient Chinese health system. Kelly, who is also a renowned fine artist, teaches Tai Chi to the severely ill at the Norton Hospital in Louisville, including ME/CFS, Long Covid and cancer patients.
The secret to Kelly’s teaching is that it is undemanding, but has a beneficial effect on circulation, oxygen uptake, flexibility and mobility. It makes even the extremely sick feel a little better; they can do something that is fun and won’t land them in bed for days.
The essence of Tai Chi as taught by Kelly, who has practiced it since he was 8 years old, is anyone can do it, no matter their physical condition, and benefit from it. Kelly’s classes are based on “The Harvard Medical School Guide to Tai Chi.”
His motto is “no pain, no pain” — and that sets the tone for gentle movement. “We’re not asking for and don’t want 100 percent of your comfort zone. Our aim is 70 percent of it,” he says.
After my wife and I took a couple of his classes (we were seated in chairs), we filmed an episode of “White House Chronicle” on PBS, the weekly news and public affairs program that we produce and host, in the hope it would help ME/CFS and Long Covid sufferers. The response from viewers has been gratifying. The PBS episode is available on ME/CFS Alert on YouTube; Kelly’s contact details are in it.
When you are severely ill with ME/CFS or Long Covid, getting through the day is a big deal. Tai Chi can help.
“It relaxes me and gives me confidence that I can still function physically,” said ME/CFS Alert co-host Waroff, who has just taken a couple of virtual classes with Kelly.