Covid is likely to persist once its pandemic phase has passed and circulate each winter alongside the flu. Even after more of us contract coronavirus infection and develop immunity to it or even after an effective vaccine arrives, some people will still get very sick. — Scott Gottlieb
Covid-19 is an illness that doesn’t leave everyone free of symptoms after treatment and discharge from the hospital. Some suffer a second covid infection after what was thought to be an effective treatment regime.
But patients who leave after treatment may find symptoms don’t resolve. They are the new category of long-haulers where covid has taught us that symptoms can linger for months.
The virus may wax and wane for years; no one knows. It is an illness that struck in late 2019 without the medical community knowing how to treat it effectively. Desperate calls went out for ventilators as patients died.
Now, we have not one but three vaccines, at least one drug, a helpful bed position (proning), and monoclonal antibodies, but none of this halts long-hauling incidence in some patients. The virus marches on with its battle of destruction, disability, and work impairment. The “new normal” isn’t normal at all, and continued assistance and treatment are needed.
A major challenge remains to be the lack of specific research on COVID-19 symptoms and aftereffects.
Long-Hauler Patient Symptoms
“Adults with severe illness who spend weeks in intensive care, often intubated, can experience long-lasting symptoms, but that’s not unique to patients with COVID-19. What’s unusual about the long haulers is that many initially had mild to moderate symptoms that didn’t require lengthy hospitalization — if
any — let alone intensive care.”
But the virus would not be defeated and the deceptively mild to moderate symptoms were a ruse.
In a Paris, France hospital, covid-19 patients, after a short period of anosmia or ageusia, “complained of a relapse with persistent symptoms, especially myalgia, intense fatigue, sensation of fever, shortness of breath, chest tightness, tachycardia, headaches and anxiety.” The hospital sees about 30 patients per week who have similar symptoms and complaints. Other clinics in the US are beginning to see an upsurge in patients.
Patients who realized they were not alone and wanted the support of others have joined the Long Haul COVID Fighters group which claims 8K members.
The medical community has realized there is a need for specialized medical services for these patients and it isn’t in an in-patient hospital setting. Therefore, we are now seeing the emergence of specialized clinics.
Long-Hauler Patient Clinics
The introduction of a variety of vaccines and medications have enabled healthcare professionals to address the needs of long-hauler patients. Tackling this new patient group has led to re-thinking the clinics and staffing for their treatment. The symptoms may last for many months and continue to mystify even healthcare professionals.
Estimating the numbers of long-haulers and their symptoms is imprecise, but it may be as many as two million former patients with an inordinate number of symptoms. “A recent survey by the grassroots group COVID-19 “Survivor Corps” found that fatigue was the most common of the top 50 symptoms experienced by the more than 1500 long haulers who responded.”
One study tallied up to 200 different symptoms in long-haulers. The number of symptoms and the variation is presenting more challenges since this is a new syndrome. And other research studies indicate up to 10% of patients experience prolonged illness.
Institutions are attempting to resolve the upward trending of need. One clinic has opened at the Seattle Harborview Medical Center’s Post-COVID Rehabilitation and Recovery Clinic.
A rehabilitation physician at that center, Dr. Aaron Bunnell, indicated that, initially, they saw two patients a week. As of the end of 2020, the number of patients rose to 25 a week being referred to them.
In New York City, Montefiore Medical Center in New York opened the COVID-19 Recovery Clinic (CORE) “Just as physical weakness is common, so too are challenges with thinking, anxiety, fear, loneliness, difficulty coping, and difficulty sleeping,” said Aluko A. Hope, MD, MSCE, a pulmonary/critical care specialist and co-director of the CORE Clinic.
The Cleveland Clinic has established the reCOVer clinic for patients who require post-COVID treatment. The clinic responds to patient needs in the areas of cardiology, pulmonology, dermatology, ear nose, and throat, and neurocognitive among others.
Penn Medicine has also opened a rehab clinic to ensure the continuity of care for these patients who are now being referred to as having “Post-acute sequelae of Covid”.
The NIH has a new initiative to study the syndrome. A worldwide study, as well as concerns, was outlined in an NIH blog on long-haulers.
“Congress provided $1.15 billion in funding over four years for NIH to support research into the prolonged health consequences of SARS-CoV-2 infection. A diverse team of experts from across the agency has worked diligently over the past few weeks to identify the most pressing research questions and the areas of greatest opportunity to address this emerging public health priority.” A website listing new research opportunities in the area has also been established.
Other major medical centers around the United States have noted the need for specialized clinics and Cedars-Sinai in California is among them. Their estimate is that the need is increasing as the numbers of infections fluctuate. Discharge from the hospital doesn’t mean resolution of the symptoms of the illness necessarily.
The effect of the UK, Brazilian, and South African variants, too, is also of concern since they may increase the number of infected patients and vaccination may provide insufficient protection.
The requirements for registering with a clinic vary and it is advisable that anyone seeking post-covid care check each clinic’s website. Some require a referral by a physician, some require prior hospitalization or different criteria. But the clinics are cropping up all over the country and patients should be able to find one in their area. Most major medical centers have recognized the need and have responded to it.
The patient organization, Survivor Corps, has provided a listing of post-covid clinics across the US.