will covid unlock the secrets of chronic fatigue?

the link between covid-19 and the debilitating condition known as myalgic encephalomyelitis/chronic fatigue syndrome (me/cfs) stems from the large number of recovering patients — estimated at 20 to 30 per cent of the total — known as “long-haulers ”  who continue to feel overwhelmingly tired no matter how much rest they have had.  some describe  feeling as if  they have “ been hit by a truck. ” with so many more people now struggling with fatigue following covid-19 infections, advocates and experts believe the pandemic could lead to more attention — and research — into me/cfs.

what is me/cfs ?    

me/cfs  is a complex disease ,  so disabling that it often confines  patients  to bed.  its hallmark symptom is  known as  post-exertional malaise,  where  fatigue worsens after any physical or mental activity .  patients  have little option but to  pace themselves by choosing between what they do during the day — ‘do i cook or take a shower?’

despite  its name,  the symptoms of  me/cfs  go well beyond  fatigue. patients also suffer from sleep problems, brain fog, pain, dizziness, and hypersensitivity to light  and  sound, among other symptoms. 

“i have lost so much,” says heather cockerline,  a 53 year-old education coordinator in belleville, ontario, who was diagnosed in 2017.

“ i have lost my career, my ability to critically think, to communicate clearly in conversation. i worry i will not be fully present for my kids and grandkids.”   me/cfs has  one of  the  highest rates of disability  and  lowest qualities of life  o f  chronic conditions .  

emily taylor’s mother also lives with me/cfs. she once called 911 because she thought her mother was having a stroke, even though her loss of words was a symptom of me/cfs.  taylor works as an advocacy and community relations director at solve m.e . , a los angeles-based non-profit  and  the largest private source of me/cfs  research funding.

“we use the analogy of iphone batteries,” she says. “ someone with severe me/cfs   leaves the house with a 10 per cent battery all the time. those with moderate forms are say, at 50 per cent battery , and t hose  with mild  forms are  still only at 75 per cent . t hey are never full y  charged .”

outside the margins of mainstream medicine  

while  chronic fatigue  affects  over 400,000 canadians  and  about  2.5 million americans,  m any within the medical community do not appreciate  its severity.  this is because me/cfs  is  often relegated to  the margins of mainstream medicine. 

“ many s ufferers are told that it is a psychological illness and it is all in their head,” says taylor.  

me/cfs does not have a known  single  cause or a specific  diagnostic  test.  most medical tests come back normal, making  me/cfs a “diagnosis of exclusion.” there is  also  no  known  cure  or treatment . p atients  are typically left to  manage their symptoms  as best they can .   

me/cfs was  classified as  a true biological disease  by the  institute of medicine in the u.s.   in 2015 .  even so, it  is rarely taught in medical school s,  few healthcare providers are comfortable managing  it, and researchers  studying its causes and cures receive little  in funding compared to other  diseases.  

covid-19 long – haulers 

four out of every five people  with me/cfs have a viral illness at the onset of their  fatigue,  most commonly epstein-barr  virus (the virus behind “mono”) and the flu.  the 2003 sar s  epidemic also le ft  many  victims  suffering from post-viral symptoms. it is, therefore, not surprising that covid-19 long-haulers  show symptoms similar to me/cfs .  the question is what lessons can be drawn for long-suffering me/cfs patients.  

one cause for hope is how quickly the link between covid -19  and me/cfs has come to light.  me/cfs is usually diagnosed years after initial viral exposure,  resulting in a missed opportunity for researchers. 

“ having  thousands of covid-19 patients , much as i hate to say it, is an  opportunity for a natural experiment  in real time to understand why some patients recover and others do not,” says oved  amitay ,  p resident and ceo of solve  m.e . the organization recently launched an online regi s try, known as  you + m.e.  which  enables me/cfs and covid-19 patients to provide blood samples and report symptoms  on an app . 

dr. ami mac is the d irector of  t ranslational  m edicine at the  stanford genome technology centre   in california and also has me/cfs. she echoes the need to  collect data  during the pandemic.

“it’s easier to heal someone when they are initially sick,” she says. “ w hen it becomes chronic, it is so much more difficult.”  

recent research could also pave the way to testing for the syndrome. a université de montréal group, affiliated with the open medicine foundation, a global non-profit involved in combatting me/cfs, published an article in scientific reports last month that could pave the way to a new, non-invasive diagnostic test for me/cfs.

micro-ribonucleic acid s  (rna) can be potential indicators for disease in the body, and this group identified 11 rnas that are different  in  me/cfs patients .    thanks to  an anonymous  $1 million donation ,  the  o pen medicine foundation  will  include  covid-19 long-haulers in  its  next  study .   

covid-19 has also  highlighted  the need  for  more chronic fatigue clinics .  before the pandemic, dr. eleanor stein ,   a calgary-based psychiatrist , began offering  group psychotherapy to  her growing list of me/cfs patients.  when the pandemic hit, her practice became  even  busier  as  patients across  alberta, and beyond,  g ained  virtual access  to her services .    

“the medical system is not ready  for an influx of  covid-19 long-haulers and new  me/cfs patients, ” stein says .  “ in canada, we only have  three me/cfs specialized clinics — in toronto ,  vancouver ,  and  halifax —   with wait times of approximately  two  years. ”  

l earn ing  from the past   

the  apparent link between  me/cfs  and covid-19 could  benefit  sufferers  of each disease. 

“ me/cfs patients have been living a quarantined life for decades. they are writing ‘how to live in isolation ’  guides for all of us  in the  pandemic . they have  practical advice , ” says taylor. “ we are adopting the long-haulers as a group of folks we are also fighting for . ”   

t he community is also learning  how to plan and pace for  post-exertional malaise .  c linicians  used to make  the mistake of  encouraging me/cfs patients to remain active when , in fact,  rest  has turned out to be  the best medicine.  they are now determined  not to let covid-19 long-haulers   mak e the same mistake.   

some me/cfs patients are frustrated that  covid-19 long-haulers are receiving so much attention after  they were neglected for decades .  for example, a  recent   nature editorial  suggest ing  that me/cfs patients  can  help define long-lasting covid-19 symptoms,  phrased its arguments in  the past tense. the piece prompted a response from a peter white, who calls himself an “me/cfs campaigner”:  “your use of the past tense — for example, in saying that people with me/cfs “struggled” to have their condition recognized, they ‘were not’ listened to – wrongly implies that those problems have been solved,” he wrote. “ the reality is that the tragic situation continues . ”   

  jillian macklin is an md/phd student at the university of toronto.