DUBAI: “Long-haulers” is a term that emerged from the ongoing pandemic. It describes patients who have only partly recovered from COVID-19, beset by symptoms (some debilitating, some minor) that linger for months.
For many, their encounter with the 2020 virus has left them feeling permanently transformed — for the worse.
World Health Organisation reported early this year state that about 80% of coronavirus infections are "mild or asymptomatic" and patients typically recover after "just two weeks".
Long haulters don’t fit that label.
What is long-haul COVID-19?
It’s a subset of the pandemic’s victims, a “fringe” population, generally left out of the COVID-19 narrative.
Long haulers are people who report being weighed down by COVID-19 symptoms for a long period of time, well after their supposed “recovery”. It’s almost half-a-recovery.
Today is my 77th consecutive day with a fever. My chest is burning as if I had a leather wallet plucked from a campfire and stuffed in my chest.
Symptoms range from lingering dizziness to mild discomforts, foggy minds, intense fatigue and continual fear of erratic symptoms. The so-called "COVID toes" had also emerged as one of the symptoms.
Some long-haulers report being afraid to go anywhere — as they fear the quick manifestation of the worst symptoms.
What do we know about the long-haul effects of COVID-19?
Not much exists in the scientific literature about these “long-haul” cases.
SARS-CoV-2 is completely new virus. COVID-19, the disease caused by the virus, had been with us for less than a year. There’s a segment of recovered patients who report the knock-on effects of the disease clinging to them for months.
People with only “mild” or “moderate” cases, report having difficulty in finding a doctor who can guide and support their recovery process.
Faced with uncertainty, many have become their own doctor — or found solace in each other, by sharing experiences on social media.
What is the treatment for long-haul COVID?
There is no known treatment yet for “long haul” COVID. Vaccines being developed are all aimed at preventing SARS-CoV-2 infections in healthy people.
A treatment for long-haulers, to be validated, should meet the strict standards of a randomised, double-blind, placebo-controlled trial in multiple locations and on thousands of people.
Do herbals and vitamins help?
Many long-haulers who fear the seeming permanence of their disease have turned to tinctures, chiropractor treatment, “Anti-Coronavirus Frequency” on Spotify, or anything they believe would break a systemic, debilitating curse and alleviate their suffering.
What’s the percentage of those who recover with symptoms that linger for months?
It is currently unknown.
I think I’m one of the long haulers. What can I do? Keep your yourself informed about how others who may be in a similar situation like you. One good place to start is social media, such as the Facebook group, called “CORONAVIRUS SURVIVOR CORPS”. There are a number of other such groups.
These are some of the many stories of “long-haulers”, people who suffer debilitating conditions weeks or months following COVID-19 infection.
1. 77th consecutive day with a fever
Feeling down today. I know there are people that have it worse than I do or have lost their battle. I'm six days away from being sick for seven months. Today is my 77th consecutive day with a fever. My chest is burning as if I had a leather wallet plucked from a campfire and stuffed in my chest. I wake up every night with leg kicks (stronger than twitches.) All this without a positive antibody test and people doubt it's COVID-19 despite no findings with three CT scans, two echocardiograms, a PET scan, tons of blood work and autoimmune, pulmonologist, and Infectious Disease docs still labeling it "fever of unknown origin." [Posted August 10, 2020]
2. Blood clot
Shortly after recovering from a blood clot in my left leg I started showing symptoms (dry cough & hoarse voice), July 24th before learning that I was exposed to someone who tested positive for the virus. July 25th, I went to get tested (self isolated myself immediately afterwards). I had not received my result until this past Saturday, August 8th which was positive. August 6th was the 1st time I found out that I was Covid-19 positive because I got retested on August 5th due to the delay of the 1st test.
From July 26th to July 30th was hell — loss of taste & sense of smell, difficulty breathing during coughing spells, runny nose, headaches, body aches, chills, no appetite, fever, & weight loss from you know what, but I am here today to tell you that I've survived those days! I am still recovering & has been in self isolation since then (besides for going out to be tested the 2nd time).
Keep me in prayer still that I recover fully! I miss my children & can't see them until I test negative. I am so not used to not being around them like this nor my sisters, nieces & nephews. I look forward to stepping back out into the world & being around my loved ones & friends. I look forward to being a fully recovered Covid-19 survivor.” [Posted on August 11, 2020]
3. Shortness of breath
Once again going to the doctor was completely pointless I told them about my shortness of breath they checked it said I was good My throat is sore completely disregarded it as something minor then I come home and I tell my family and they disregard it.
As anxiety or whatever I'm literally screaming on the inside they told me because I don't have any underlined issues that nothing's wrong
Like I don't know my own body, I told the doctor also that my fingernails, I also white along with mucus she told me that was normal as long as it's not green or different colors ‘you're fine’. I honestly don't know where to turn at this point. [Posted on August 11, 2020]
For some, the residual side effects are just “annoying”. For example, another survivor posted: “Wondering if we all could start using the rating scale of 1-10 when we are referring to our pains, symptoms, side effects, and damage due to COVID-19. It could give others an idea of the severity of the condition. Or use terms like mild, moderate, severe, occasional, intermittent, frequently, or rarely. Just a thought. When I had it back in April, my symptoms were moderate. No fever, pain in joints 7-8, cough 2, chest tightness 4. And residual side effects are intermittent SoB especially when it's hot & humid or when wearing a mask ranging from 2-5. Overall, not bad but annoying. [Posted August 11, 2020]
What are the symptoms?
For some who recovered from COVID-19, even the so-called “mild” cases leave a whole list of puzzling symptoms four months out following infection.
- Relentless and rolling waves of fever
- Extreme fatigue
- Chest pains, or heaviness in her chest (discomfort around the heart region)
- Chest pain/inability to catch breath/shortness of breath
- Loss of sense of taste/smell
- Neurological symptoms (i.e. headaches, hallucinations jumbled words)
What about long-haulers among children?
Long-term symptoms are rarer in children than in adults, as most young people tend to be "asymptomatic" or have mild symptoms.
Still, it doesn’t mean that kids won’t be sick for a very long time or that there might not be some permanent damage on their bodies, whether it's the development of asthma or just long-term inflammation, say experts.
Among children, many have “COVID toes,” as it’s commonly called, which involves the development of painful lesions on the hands and feet and typically affects younger adults and children.
It remains unclear why children experience COVID-19 symptoms for long periods. Dr. Iris Gorfinkel, a family physician and medical researcher in Canada, said that like adults, there could be several explanations for why children may also have waves of new symptoms that can reoccur over weeks and even months. She said the virus could be causing direct damage to the body’s organs resulting in long-term problems for the individual.
After a few months, the lesions eventually disappear, but leave a rash on the body and arms, sometimes coupled with vomiting and diarrhea. Other children have also had sporadic chest pain and problems breathing.
Parents of children of have had COVID-19 also report mild symptoms of fatigue, chest pressure, sore eyes, and intermittent nausea while Laina only had some sniffles and sore eyes.
I think I’m one of the long haulers. What can I do?
Keep your yourself informed about how others who may be in a similar situation like you. One good place to start is social media, such as the Facebook group, called “CORONAVIRUS SURVIVOR CORPS”. There are a number of other such groups.
It offers a wealth of testimonies from among people who have had a bout with the long-term effects of the coronavirus.