The world is hopeful that COVID-19 is almost gone but even as the latest surge of the virus recedes, experts believe that it could leave behind yet another epidemic – this time of chronic fatigue!
The chronic fatigue syndrome has been unexpectedly common amongst COVID-19 patients and experts warn that this will be something people might deal with for a long time.
In fact, scientists see parallels between chronic fatigue, which affects no less than 1.5 million Americans and the virus – long COVID in particular – more and more.
The symptoms that might indicate you have long COVID are: persistent pain and cognitive impairment as well as constant exhaustion that can last for months in some COVID-19 patients, long after recovering and testing negative again for the virus.
At this point in time, the link between COVID and the chronic fatigue syndrome still needs to be studied but some current research shows that the pandemic may even triple the preponderance of the syndrome, also known as ME (myalgic encephalomyelitis.)
A board member from advocacy group #MEAction Network, Robert Sklans, explains that “When we saw COVID-19 happening, people in the ME community were the first to raise an alarm that this was going to be a mass disabling event. We were looking at all the symptoms of long COVID and saying there’re going to be a boatload of people with ME/CFS.”
Research into the long term impact of COVID is still in its early stages but there is already clear evidence that every 1 in 10 cases might end up developing chronic fatigue.
What this equals to is around 7.7 million cases in the United States alone.
It may not sound like a huge issue but in reality, those familiar with the complex syndrome know how debilitating of a disease it is, as it is even able to leave its sufferers permanently homebound.
At the same time, this perceived link between COVID-19 and the syndrome has actually raised serious hopes of more research funding and awareness for this less known disorder that hasn’t gotten nearly as much attention as it needs.
Former Morris County man, James Strazza, is an example of a patient that has unfortunately been confined to his house for the past 2 years because of this condition.
He said that the public just needs to be aware of “how little the government and the medical industry cares for those with ME and with chronic illness in general. Our funding is at the bottom of the list for the NIH.”
But, as mentioned before, medical experts now see a clear link between long COVID and chronic fatigue syndrome, both of them causing brain fog, long-term pain, extreme fatigue and both of which develop from infections, and this could really lead to more research and better solutions.
Brayden Yellman from the Bateman Horne Center in Salt Lake City, which is one of the leading treatment centers for ME in the country, stated that “There are estimates that anywhere between 10 percent to 30 percent of people who get a serious infection of COVID — not hospitalized, but a decent infection — can go on to then develop long COVID. This will increase the numbers of people with ME/CFS exponentially.”
Furthermore, both patients and advocates have been pushing the federal government to also include research into ME and CFS into the RECOVER initiative – a billion dollar study meant to research long COVID that was launched back in October of last year by the National Institutes of Health.
The managing director at #MEAction, Laurie Jones, told Congress later that the initiative should also be “prioritizing ME / CFS researchers and building off research that already exists.”
The groups requested lawmakers to “hold the NIH accountable” and “initiate long COVID clinical treatment trials immediately.”
The reason why advocates are pushing more research into understanding the illness is for efficient treatment to be delivered quickly to those suffering from long COVID but also those suffering from ME or CFS.
And #MEAction is not alone in its initiative as other groups including the Patient-Led Research Collaborative, which focuses on long COVID, as well as Body Politic, a COVID support group, have both written to the NIH, complaining about the lack of research into the chronic fatigue syndrome.
The director of the NIH’s National Institute of Neurological Disorders and Stroke, Walter Koroshetz, who is heading up the RECOVER study, says it is expected to take about 4 years to complete.
Lauren Nichols, the vice president of Body Politic, was really healthy and athletic until she tested positive for COVID-19 two years ago.
The Boston resident used to walk 6 miles every day and was told that she would be totally fine if she ever caught the virus.
In reality, however, when it did happen, Nichols was hit badly by the first wave of the pandemic and is still to recover.
“My former doctor said to me, ‘You are 32 years old; even if you get COVID you’ll be fine.'”
However, the illness felt like “a combination of mononucleosis, dysentery and pneumonia.”
She was told to just go home and deal with the infection alone, in her “tiny one-bedroom apartment,” but after spending no less than 4 weeks mostly in bed, she was nowhere close to getting better – in fact, her illness was worsening.
Nichols recalls that “It felt like my bed was my death bed. I had severe gastrointestinal problems that lasted for 4 months straight. I had 46 bouts of diarrhea and of blood coming out of my body. I could not hold water down and I lost a significant amount of weight. I don’t know how I survived. It was incredibly traumatic.”
The woman then developed pneumonia as well as numbness in her left foot.
Furthermore, she recalls her very blood felt “fizzy” and that was not all!
Soon after, “significant” brain fog and seizures started occurring!
“It felt like [I had] dementia. One day I was trapped in my shower because I did not know how to use the door handle. I remember just sitting on the shower floor crying because I did not know how to get out.”
It’s been over 23 months since then but the patient is still suffering greatly from her battle with COVID-19.
As the pandemic progressed, medical experts, especially those who specialize in ME or chronic fatigue syndrome started to recognize the symptoms in those who were identified with long COVID.
Just like their ME/CFS patients, long COVID patients also dealt with problems in an array of areas such as the brain, lungs and heart!
Yellman shared that the chronic fatigue specialists at the Bateman Center in Utah “enrolled a bunch of long COVID patients to learn about them and to try to treat them like they have ME / CFS, and we’ve had great success in improving their symptoms. They meet all of the clinical criteria we have for ME / CFS. At the end of the day, it’s absolutely the same illness.”
All in all, NIH’s Koroshetz stressed that there are still obvious differences.
More precisely, COVID-19 cases are “much more homogeneous” as well as more traceable, which allows researchers to study a case from its very inception while ME/CFS is diagnosed long after the fact most of the time.
Remdesivir and other medications have been effective in treating COVID while ME/CFS medication does nothing but deal with the symptoms at this point in time.
Rehabilitation options also tend to vary between the two diagnoses.
As per Koroshetz, it really looks like the RECOVER study has been launched and created to help COVID patients only, given the discrepancies between the two illnesses.