[CFS-L] Column: PASC: ME and Covid-19

[Dr. Marc-Alexander Fluks]

Source: Live Science
Date: August 27, 2021
Author: Ashley P. Taylor
URL:
https://www.livescience.com/long-covid-chronic-fatigue-syndrome.html


What chronic fatigue syndrome can teach us about 'long COVID'
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The two conditions may have similar causes.

Brain fog. Fatigue. Sleep problems. These symptoms plague many people
with 'long COVID' for weeks or months after recovering from COVID-19.
But these symptoms are also remarkably similar to those of another
disorder that's been studied for decades: myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is
characterized partly by unexplained fatigue.

Researchers hypothesize that the two conditions may have similar causes.
They also hope that existing knowledge about ME/CFS might be able to
help some long COVID patients and that the study of long COVID may spur
treatments for ME/CFS and better care for patients.

'I think the tools we've applied to study ME/CFS can now easily be
applied to long COVID as well. And vice versa. What we've learned on
long COVID is going to benefit us in ME/CFS,' Dr. Avindra Nath, clinical
director of the National Institute of Neurological Disorders and Stroke,
told Live Science. The flip side is that after decades of study,
researchers are not certain what causes ME/CFS, Nath said. Further,
there is currently no cure for the condition, although patients may seek
treatments for their individual symptoms, according to the CDC.
Accordingly, the most significant thing ME/CFS can teach doctors about
long COVID is to 'be humble,' he added. 'What it [ME/CFS] has taught us
is that there are limits to medical knowledge and to medical practice,'
he said.


Similar symptoms

ME/CFS is an umbrella term that includes both myalgic encephalomyelitis
(ME), a condition that's been reported in medical literature since the
1930s, and chronic fatigue syndrome, which is characterized by
exhaustion and which the medical literature first described by that name
in the 1980s, according to a 2015 report by the Institute of Medicine.
Symptoms of ME/CFS include fatigue after relatively minor physical and
mental activities, unrefreshing sleep, brain fog, pain in joints and
muscles, and dizziness and lightheadedness when standing upright,
according to the CDC.

All of the aforementioned symptoms of ME/CFS have also been reported by
patients with long COVID, which is defined as symptoms that appear or
continue four or more weeks after first being infected with SARS-CoV-2,
the virus that causes COVID-19. Additionally, both conditions are more
common in women than in men, Nath said. These similarities have led
doctors to wonder whether the two conditions are one and the same. Nath
gave a keynote address on the topic of ME/CFS and long COVID on Aug. 20
at The International Association for Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (IACFS/ME) Conference, which was held virtually.


Common trigger

Both ME/CFS and long COVID can occur after a viral infection: Although
doctors can't fully explain what causes ME/CFS, having infectious
mononucleosis, or 'mono,' which is most commonly caused by the
Epstein-Barr virus, is the most common trigger for ME/CFS, according to
Leonard Jason, a psychologist who studies ME/CFS atDePaul University in
Chicago. About 10% of people who are infected with Epstein-Barr virus
have symptoms consistent with ME/CFS six months following the infection,
according to the CDC. Not all cases of ME/CFS follow a known viral
infection, however. Long-COVID, of course, follows SARS CoV-2 infection
by definition.

So one possible cause of both conditions is persistent viral infection -
when a virus hides somewhere in the body where tests cannot detect it,
but it can still cause trouble, Nath said. Another is that the immune
system is overreacting and causing symptoms, Nath added. The immune
system has two branches, adaptive (producing antibodies in response to
pathogens) and innate. Nath likens the adaptive immune response, in
which antibodies and T cells go after specific pathogens, to targeted
missile attacks. The innate immune system, in contrast, is more like
blanket bombing an entire village in hopes of killing one person within
it, Nath said. The innate immune response, Nath hypothesizes, may cause
symptoms of long COVID and ME/CFS. 'The problem with that is once you
turn on this massive, gigantic armed force, it's very hard to turn it
back around again,' he added.


Possible differences

Some long COVID patients, or 'long haulers,' as they are also known,
experience an improvement in their symptoms over time, according to a
study led by Jason that was published in April in the journal Fatigue:
Biomedicine, Health & Behavior. The researchers surveyed 278 COVID-19
long haulers, who had been infected with COVID approximately six months
earlier, about ME/CFS symptoms that they were currently experiencing and
the symptoms they experienced in the first two weeks of their illness.
The study participants also answered some questions about
COVID-19-specific symptoms. The researchers then compared the long
haulers' responses about the two time points. The team also compared
long haulers' symptoms to those reported by a group of 502 ME/CFS
patients, who answered the same questions about their symptoms within
the last six months.

COVID-19 patients initially had more severe symptom ratings than ME/CFS
patients on some measures of sleep quality, as well as for symptoms like
flu and sore throat, but by the second time point, many of their
symptoms had improved and become less severe than those of ME/CFS
patients. An exception to this trend was that six months post infection,
COVID-19 long haulers reported dizziness upon standing that was more
severe than that reported by ME/CFS patients. On the other hand, the
long haulers' neurocognitive symptoms, such as brain fog, worsened over
time, yet remained less severe than those of patients with ME/CFS.

What do these results, which were also presented at the IACFS/ME
Conference, say about whether ME/CFS and long COVID are distinct or
overlapping conditions? Because COVID-19 long haulers' symptoms became
less severe over time, Jason predicts that many long haulers will
recover, either fully or for the most part, but that patients who are
still sick after a year or two 'will be very comparable, probably, to
the ME/CFS case definition,' he said.

While Jason predicts that long COVID patients who ultimately have ME/CFS
will be a subset of the total long hauler population, Nath, on the other
hand, sees essentially all cases of long COVID as being similar to
ME/CFS. 'Anywhere from 10 to 30% of individuals at six months post [SARS
CoV-2] infection are still complaining of symptoms that could overlap
with ME/CFS. Whether they are exactly the same, we still do not know,
but they certainly look similar in many ways,' Nath told Live Science.

Jason and Nath agree that with long COVID, many more people in the world
will have a chronic-fatigue-like condition. So far in the U.S., more
than 37 million people have been infected with COVID-19, according to
the CDC. Even taking into account the more than 600,000 people who have
died, if 10% of people infected developed long COVID (that's the lowest
estimate of long COVID's prevalence) and everyone with long COVID had
symptoms similar to ME/CFS, there would be at least 3.7 million cases of
a condition that resembles ME/CFS.


Increased awareness

'Having more people get sick [with ME/CFS symptoms] is a tragedy,
certainly. But on the other hand, it will kind of get more policy people
and people within legislatures like Congress to think about the needs of
these individuals,' Jason said.

Most medical schools do not teach students about ME/CFS. 'The illness is
often misunderstood and might not be taken seriously by some healthcare
providers,' the CDC states. Many physicians dismiss the symptoms of
patients with ME/CFS if they can't find an obvious biological cause that
explains them, Jason said. People who have long COVID are facing the
same sorts of problems. 'I can't tell you how many people have called me
with long COVID and have said, if doctors can't identify some specific
organic damage to them, people are dismissing their symptoms,' he said.
The emergence of long COVID could prompt physicians to take ME/CSF more
seriously.


Common treatment

Although there is no cure for ME/CFS, it's possible to treat - or at
least attempt to lessen - some of the condition's individual symptoms,
according to the CDC. For example, a person who has trouble sleeping
could try over-the-counter sleep medications, talk with a doctor about
prescription sleep medications, or see a sleep specialist, the CDC
states, while admitting that with regard to sleep problems, 'for people
with ME/CFS, not all symptoms may go away.' Still, the strategy of
treating individual symptoms could also help people with long COVID,
Jason said. 'When you have people who are ill like this, they need a
multidisciplinary approach to rehabilitation,' he said. That can mean
seeing a nutritionist, a pain specialist, a sleep specialist, or
whatever health professionals treat the symptoms a patient is having, he
said.

It's essential that health professionals treating ME/CFS and long COVID
patients understand that what might help most people gain more energy,
such as working out 30 minutes several times a week, could actually hurt
these patients, Jason said. Instead, 'physical and occupational
therapists can help these patients with learning how to pace, learning
how to structure your life in a way that doesn't make you sick,' Jason
said.

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