“I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms.” Paul Garner – Infectious Diseases Specialist
A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds one of ME/CFS. For one, it’s causing weird symptoms (loss of smell and taste, buzzing, electric, vibrating sensations, red/purple faces, purple toes, pink eye, digestive issues, nausea, dizziness, cognitive issues) that aren’t usually associated with a virus.
“Our immune cells get activated so a lot of chemicals get released throughout our body and that can present or feel like there’s some fizzing. When our immune response is acting up, people can feel different sensations… I have heard of similar experiences in the past with other illnesses”.
Post COVID-19 Cohort Showing up in the Media
“People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms and their unpredictable course.”
While Garner specifically mentioned ME/CFS in his piece, a recent New York Times piece, “Surviving Covid-19 May Not Feel Like Recovery for Some”, did not but you could replace every mention of COVID-19 with ME/CFS and not skip a beat. We could be watching a slow-motion epidemic of ME/CFS unravel before our eyes.
“Some of the longest-suffering Italians are finding themselves in physical and financial uncertainty, unable to shake sickness and fatigue and get back to work.”
“We have seen many cases in which people take a long, long time to recover. It’s not the sickness that lasts for 60 days, it is the convalescence. It’s a very long convalescence.” Alessandro Venturi, director of the San Matteo hospital, Pavia, Italy.”
“It leaves something inside you – and you never go back the way you were before.”
Another doctor noted that after all the different, initial symptoms were gone, it was the fatigue that remained. That rang bells. Early studies of the ME/CFS outbreaks came to the same conclusion: the early symptoms were often different but the fatiguing state that ultimately remained was quite consistent.
The medical profession generally treats acute cases of infections and then drops out. Dr. Bateman noted in “ME/CFS Diagnoses Could Rise After Coronavirus, Researchers Suggest”:
“Because we generally, in the past, haven’t taken viruses seriously, we simply tell patients to ‘go home and rest up’. The significant fraction (which might be as high as 1-10%) of patients who do not recover normally after infection have often been marginalized and forgotten.”
This time there may simply be too many unrecovered patients for the NIH and other medical funders to ignore. After Fiona Lowenstein opened a Facebook site for people struggling to recover from COVID-19, it was flooded with thousands of members.
“I thought I had fully recovered a couple of weeks ago, then I relapsed into some old symptoms, chills and sweats. And this intense feeling of fatigue. It almost feels like I’ve been hit by a truck at 4:00pm each day.” Fiona Lowenstein
The Special COVID-19 ME/CFS Cohort
Picking the right cohort to study will be important. People who land in intensive care, and on ventilators, for instance, are often going to have trouble recovering, not necessarily because of ME/CFS, but because of the damage to their lungs and other organs that has occurred. The long-term effects of having “acute respiratory distress syndrome” are well known.
These more complicated patients, many of whom are older and have risk factors such as diabetes, heart conditions, lung conditions, liver disease, etc. don’t readily fit an ME/CFS profile. A recent case series study that tracked the course of disease in 5,700 patients in 12 different New York City hospitals found that the median age of the hospitalized patients was 63, and that the vast majority of the patients (88%) had two or more dangerous co-morbidities.
It certainly doesn’t usually take a hospital stay to cause ME/CFS. Simply a nasty cold is all that’s needed to set one up for decades of illness. Healthy people with zero risk factors who weren’t hospitalized – but who haven’t been able to recover – are the group we need to focus on. The illness in any other group could be too easily tied to lung damage or some other issue associated with severe illness.
The non-ICU group is also the group – people in the prime of their lives who become chronically ill – that we, as a society, should be most focused on. This group is starting to showing up as well.
“But there is another unexpected element: a growing number of reports that even people with mild illness, who didn’t go to hospital, are experiencing long-lasting symptoms. Some people infected in February or March are still being ambushed by extreme fatigue, headaches, sudden breathlessness and problems concentrating or doing even light exercise.”
Many will probably recover, but if COVID-19 patients go the way of past Ross River virus, Coxsackie B, Giardia and SARS patients and others, a subset will remain quite ill.
Not Seizing the Moment …Yet.
The NIH is not yet attempting to understand the long-term effects of COVID-19. A variety of searches (post COVID-10, COVID-19 sequelae, COVID-19 recovery) of the NIH Project reporter site found just one study that might be helpful.
To some extent, that’s understandable. COVID-19 has presented the NIH with a once-in-a-lifetime (hopefully) all-hands-on-deck, find-answers-now kind of crisis. They are not looking to the future: they’re just trying to get through the present.
One group, thankfully, is definitely seizing the moment.
Seizing the Moment: Open Medicine Foundation Launches International ME/CFS COVID-19 Study
We may never have a bigger moment, a more ripe opportunity to get at chronic fatigue syndrome (ME/CFS), or a greater chance to get on a bigger stage.
The world, after all, is focused on COVID-19. More research muscle in a shorter period of time has been put to work on COVID-19 than ever before. With hundreds of thousands of people potentially coming down with post-infectious illnesses in the U.S. alone, we have an opportunity to insert ourselves into the biggest, single medical research effort ever.
Being able to definitively show that large numbers of formerly productive, healthy people have been unable to recover from COVID-19 would put us quite a ways down the road to definitively erasing the stigma associated with ME/CFS. Being able to uncover how that happens molecularly could, of course, give us the answer or answers to this disease. Plus, bringing the new ME/CFS patients into the community’s fold could provide a rocket boost to our fundraising and advocacy.
That’s why the Open Medicine Foundation (OMF) and Ron Davis’s decision to seize the moment and produce an international effort to understand how COVID-19 turns into ME/CFS is so welcome. The OMF’s four-site COVID-19 study (Stanford, Harvard, Canada, Sweden) will collect body fluids, do continuous health monitoring using wearables, and collect symptom data over two years. Its genomic, metabolic, and proteomic analysis will attempt at the molecular roots of ME/CFS as it occurs.
We’ve had research efforts examine post-infective fatigue states before but never with the tools available now.
Whitney Dafoe Urges Support of the Study
Whitney Dafoe, Ron Davis and Janet Dafoe’s severely ill son, is so ill that he rarely makes statements, but with this study looming, he did. He made clear why everyone, healthy or ill should support it.
“My name is Whitney Dafoe and I have severe ME/CFS. I have had symptoms for 15 years but have slowly gotten worse because of a lack of beneficial treatments.
I am only able to communicate by taking a drug called Ativan which temporarily alleviates some of my sensitivity to contact with others. It takes hours to communicate these posts and makes me worse, but I do it anyways because most people with severe ME/CFS simply disappear into dark rooms never to be seen or heard from again and someone has to tell our story. We exist.
ME/CFS is an extremely devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my career, my hobbies, everything that brought meaning to my life and all sense of humanity.
Right now, a viral pandemic has spread throughout the world.
Everyone reading this should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS.”
Should the expected explosion of problematic COVID-19 recoveries or non-recoveries occur, the data collected during this study by ME/CFS experts will only grow more and more valuable over time. Perhaps this time we’ll have the NIH knocking on our door.
Health Rising, as a rule, does not directly endorse fundraising efforts, but in this case, it’s making an exception. I’m supporting this effort. I hope you will as well. You can support it here.
Other post COVID-19 efforts/ studies that could help are underway.
The Solve ME/CFS Initiative
Leonard Jason of DePaul University
Year-long Australian Study Underway
The nice thing about the year-long study at St. Vincent’s Hospital in Sydney, Australia is how quickly ME/CFS got into the discussion. Lead by Greg Dore, an infectious diseases expert, the study, which will look at “any effects” of COVID-19, is not focused on people with very severe pneumonia or organ damage. It’s interested in every possible long-term effect of the virus.
“We’re interested in even the milder cases, whether there is an ongoing effect on people’s health, what we call a post viral fatigue; effects on people’s exercise tolerance, on neuro-cognitive function, so ability to concentrate.”
Dore clearly knows of the groundbreaking ME/CFS Dubbo studies which took place in Australia.
“We know that you can get post viral fatigue with other viruses and glandular fever is probably the classic one, but Ross River fever and other viral illnesses are well known to cause viral fatigue.”
UCSF COVID-19 Follow-up Study
The University of California at San Francisco’s (UCSF) long-term, longitudinal study is not designed to investigate post-infectious illness but it will include a wide spectrum of SARS-CoV-2 infection severity, and will collect large volumes of peripheral blood and saliva during frequent intervals for two years. Among other things, they will dig deep into the immune response to COVID-19, focusing on T cells, and define the long-term kinetics of the antibody response.
Update – As of June 5th, four major media outlet articles, three of which have mentioned ME/CFS, have highlighted the difficulty some people have recovering from COVID-19.
With the NIH otherwise occupied, Open Medicine Foundation’s COVID-19 research effort is our best chance at helping both people with ME/CFS and COVID-19 patients who are having trouble recovering. In fact, it’s the only effort going right now that seeks to directly understand and help the possibly many people, who, after surviving COVID-19, find their lives unalterably changed.
This is an opportunity not to be missed.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.