It’s hard to associate the year 2020 with anything other than COVID-19, but while the pandemic raged and so many lost their lives and livelihoods to the novel coronavirus, researchers, advocates and patients kept quietly chugging away behind the scenes, inching closer to figuring out the mystery of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Yes, the pandemic slowed the pace of finding the cause and ultimately a cure for ME/CFS, but it did not halt progress entirely.
As we look back on a year that none of us will forget, below are some of 2020’s most important ME/CFS headlines, some of which you may have missed as the mainstream media focused on covering daily infection and death counts from COVID-19.
The Silver Lining of a Killer Pandemic?
In a weird twist of fate, ME/CFS patients may actually end up benefiting from the worst pandemic in more than a century. Within weeks of COVID-19 reaching U.S. soil, national news outlets began reporting an unusual set of symptoms that lingered in up to 30% of COVID-19 patients long after they recovered from active infection. It didn’t take long before the medical community was comparing what’s become known as “long COVID” or “post COVID syndrome” to ME/CFS, another puzzling illness that’s baffled researchers for decades.
It’s hard to stomach the idea that the suffering of “long haulers” (as they’ve been nicknamed) may eventually lead to breakthroughs for those whose lives have been sidelined by ME/CFS, but that is exactly the path that’s unfolded over the past year.
“The coronavirus presents both a curse and a potential blessing,” writes Cort Johnson, the blogger behind HealthRising.org, in a December article on Prohealth. “The curse is obvious – millions sick, many dead, economies under siege, etc. The blessing is less obvious, but for people with ME/CFS and other post-infectious diseases, such as autoimmune diseases, it’s clear. Researchers have been given the gift of a huge laboratory … in which to understand how a simple infection can lead to chronic diseases long after the infection has been vanquished.”
The connection between post-COVID syndrome and ME/CFS could bring some fascinating discoveries during 2021 and beyond, so stay tuned!
U.K. Launches World’s Largest ME/CFS Genetic Study
Last summer, the U.K.-based ME/CFS Biomedical Partnership announced plans to launch DecodeME, the world’s largest study aimed at uncovering genetic differences that might predispose someone to developing ME/CFS.
The study is being funded using £3.2m from the Medical Research Council and the National Institute of Health Research.
“Our focus will be on DNA differences that increase a person’s risk of becoming ill with ME/CFS,” said Chris Ponting, principal investigator from the Medical Research Council Human Genetics Unit at the University of Edinburgh, in an article from The Guardian. “We chose to study DNA because significant differences between people with and without ME/CFS must reflect a biological cause of the illness. It is our hope that this study will transform ME/CFS research by injecting much-needed robust evidence into the field.”
The DecodeME genetic study is expected to begin early this year. Investigators are currently recruiting about 20,000 ME/CFS patients from the U.K. for the study. Find out how to participate here.
NICE Adds Caveat to Graded Exercise Recommendation
Those with ME/CFS received an early Christmas present in December when the National Institute for Health and Care Excellence (NICE) added the following disclaimer to its guidelines for diagnosing and managing ME/CFS:
NICE is aware of concerns about graded exercise therapy (GET) and is updating the current recommendations. Please see the guideline in development page for information on our update (including draft recommendations on GET) which we expect to publish in April 2021.
For years, advocates have argued against recommending GET as a treatment for ME/CFS, saying current research does not prove its benefits and may actually harm patients who are already struggling with debilitating fatigue.
Biobank Started for ME/CFS and “Long-haul” COVID-19 Patients
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In July, the nonprofit Solve ME/CFS Initiative launched the You + M.E. Registry and Biobank, “a resource of clinical information, patient-reported symptoms and bio samples that can be used by researchers to better understand [ME/CFS].”
The biobank also will store blood samples from individuals with post-COVID syndrome and healthy controls to use for future comparisons.
“Because of the large number of COVID-19 cases occurring simultaneously, we have a unique scientific window and a huge responsibility to investigate any long-term consequences and disabilities that COVID-19 survivors may face. Doing so will provide clues and potential treatment candidates for the millions of Americans already diagnosed with ME/CFS,” said Dr. Mady Hornig, associate professor of epidemiology at the Columbia University Mailman School of Public Health, in a press release. “This intensive, prospective look after [COVID-19] infection may also inform strategies that prevent additional cases of ME/CFS from ever developing.”
New Zealand Researchers Prove ME/CFS Isn’t Psychosomatic
Like so many other so-called invisible illnesses, ME/CFS has struggled for decades to gain acceptance among physicians and the public. In December, researchers at the University of Otago in New Zealand reported they had “unequivocally proved” ME/CFS is not psychosomatic based on two four-year studies recently published in Clinical Epigenetics and the Journal of Translational Medicine.
“We have found many changes in important physiological and biochemical pathways and systems compared with healthy controls,” says Warren Tate, Otago’s emeritus professor, in a report from the New Zealand Doctor. “These changes can explain the diverse symptoms experienced and the ongoing disease course. They are definitely organic rather than psychological changes and are indicative of a complex disease involving many physiological systems of the body. Our studies have shown unequivocally this is not a psychosomatic illness.”
Montreal Researchers Develop Potential ME/CFS Test
Last fall, Dr. Alain Moreau, director of the ME/CFS Collaborative Research Center at Université de Montréal, announced his team had developed a test that may one day be used to diagnose ME/CFS.
“This test, using a Hexoskin Smart Shirt to induce mild-but-reproducible [post-exertional malaise] has so far uncovered 11 different microRNAs associated with ME/CFS that are capable of differentiating ME/CFS patients from healthy patients – with a 90% accuracy,” Moreau wrote in an October update on Prohealth. “MicroRNAs can represent potential indicators for diseases such as ME/CFS and changes in microRNA expression could indicate cellular dysfunction and degeneration. Our research could lead to the development of a diagnostic test for ME/CFS and a prognostic tool used to predict future cases.”
Yet Another Study Links ME/CFS to Epstein-Barr
During a study involving 58 ME/CFS patients and 50 healthy controls, Bulgarian researchers discovered DNA of the Epstein-Barr virus (EBV) in the plasma samples of nearly one-quarter of ME/CFS patients. High levels of EBV antibodies linked with active infection also were discovered in almost two-thirds of those same patients. Ultimately, the study found active EBV infections in about 20% of tested ME/CFS patients.
“This study using both serological and [polymerase chain reaction]-based techniques for distinguishing between active and latent infection showed [a] high rate of active EBV infection among patients with ME/CFS, indicating that at least in a subset of cases, EBV is [an] important factor for the development of disease,” the study authors concluded.
Scanning the Blood for Clues
Several European research centers are partnering with SoftCell Biologicals and data visualization company Zegami on a multiyear study to compare the blood samples of ME/CFS patients against multiple sclerosis patients and healthy controls.
“The project will use Peripheral Blood Mononuclear Cell (PBMC) data obtained from the United Kingdom’s ME/CFS biobank. …Raman spectroscopy will then be used and visualized using Zegami’s software in order to differentiate between the three groups and also identify trends and patterns,” reads an article on European Pharmaceutical Manufacturer.
“SoftCell Biologicals has recently developed a patent-pending protocol to culture and examine hidden bacteria in the circulatory system,” continues the article. “Recent research into the cause of [ME/CFS] has been focused on the high levels of L-form bacteria found in patients’ blood, which suggests they may play a role in the condition.”
It is hoped the project may eventually lead to a diagnostic test for ME/CFS and/or new treatments.
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.