A veritable avalanche of stories – the C19Recovery Awareness website provides a link to approximately 50 articles since June 1st – have highlighted the problems that many people have had recovering from the coronavirus. With eight stories published in the past four days, they’re still coming at a good clip.
That is all good news. These media reports – some pitched by organizations like Solve ME/CFS and ME Action – are crucial in getting us more support. The U.S., inadvertently, is helping a great deal to keep the story in the news. Six months into the coronavirus pandemic, infections have slowed down markedly in Europe, Asia and Australia but have picked up steam in the U.S., South America and other countries.
The U.S.’s inability to get its act together, as tragic as it is, does present a silver lining: the more people that get infected, the more people will likely have difficulty recovering, and the more people will come down with an ME/CFS-like condition. That’s bad news for them, but it’s good news for everyone saddled with a post-viral illness.
Plus it could be argued that the more people that get sick, the more chance we have of getting the resources to develop treatments that will help them and others get well.
This isn’t, after all, just about Covid-19 or chronic fatigue syndrome (ME/CFS). The insights learned from this research may be able to be applied to every disease that can be triggered by an infection including fibromyalgia, POTS and autoimmune diseases. Potentially millions of people could be helped.
The media is playing a crucial role in getting the COVID-19/ME/CFS link out, but some media stories are better than others. It’s crucial that a link be made between ME/CFS and problems recovering from the virus. The best media stories for us involve people who look like ME/CFS patients; i.e. they are healthy younger or middle-aged people who were never hospitalized and who remain ill several months later. The worst news stories focus on hospitalized patients, who often have underlying conditions and never mention ME/CFS.
A recent New York Times article, “Here’s What Recovery From Covid-19 Looks Like for Many Survivors“, is a case in point. This article focused entirely on people who have been hospitalized and were often frail or sick beforehand. It indirectly implied that only people who have been hospitalized will have trouble recovering from the illness.
Thankfully, most media stories have been much better. Yesterday’s Business Insider story, “Meet the ‘long-haulers’: A growing chorus of coronavirus patients have had symptoms for more than 100 days”, noted that many “long-haulers” are younger and were never hospitalized. Normal blood tests, and tests indicating that they’ve cleared the infection, have left them medical mysteries to the medical profession. While the story does mention infectious mononucleosis, it does not mention ME/CFS.
A recent San Jose Mercury News story, “Living with COVID-19 When It Won’t Go Away“, however, hit all the points. It featured formerly healthy, younger people, mentions chronic fatigue syndrome (“The devastating Chronic Fatigue Syndrome”, in fact), notes that all sorts of people are being affected, and even emphasizes that supremely healthy people have been getting knocked for a loop. It quotes one doctor: “We have people who were world-class athletes who are really incapacitated now compared to what they were before COVID”.
An Atlantic article, “Covid-19 Can Last for Months“, by Ed Yong was near perfect. First it laid to rest the mistaken view that only elderly people or people with preexisting health problems, who ended up requiring oxygen or a ventilator, were having trouble recovering.
Yong focused on the thousands of younger, formerly healthy people flooding Facebook and Slack COVID-19 groups, and noted the similar circumstances that people with ME/CFS/FM and/or POTS had found themselves in. Yong reported how many people have ME/CFS, stated that most are undiagnosed, quoted Jen Brea, and devoted the last half of the article to ME/CFS. He even referred to Dubbo studies.
Our cause is greatly helped when medical professionals and academics speak out, and some are. Many people know about Paul Garner, the infectious disease researcher, who has never been hospitalized, but has been documenting his non-recovery in vivid terms in a blog in the British Medical Journal.
Garner (https://twitter.com/paulgarnerwoof?lang=en) was reluctant at first to say he had an ME/CFS-like condition (he thought he was perhaps still coping with COVID-19) but after several months, this formerly robust academic, runner, and ex-military man acknowledged he has ME/CFS – and even blasted the UK for not updating its NICE guidelines on ME/CFS for 13 years. It was unsettling, but also validating, to see this respected professional describe his difficulty pacing amid the shifting sands and new symptoms showing up in his perplexing illness.
Dr. Scott Krakauer, a psychiatrist, recently described his long trial with COVID-19 three days ago on Today. His doctor believes Krakauer is suffering from an ongoing immune response. He noted the many symptoms he’s seen from his many COVID-19 patients who remain unwell and even mentioned post-exertional malaise. He also highlighted ME/CFS.
A news story on Yahoo from “The Mighty Staff”, “COVID-19 May Cause Hallmark ME/CFS Post-Exertional Malaise“, explicitly linked the PEM in COVID-19 to ME/CFS and then followed that up with a nice description:
“This fatigue I’m talking about, which isn’t just feeling tired or sleepy, but like there’s no bones in my body and gravity is pushing down extra hard on me, to the point that I can’t lift my arms above my head.” — Heather Hogan
Other themes familiar to people with ME/CFS are cropping in: the dismissal by doctors, the psychologizing, the suggestions to exercise more. Because of its multi-faceted presentation, ME/CFS has been called the disease of a thousand faces. Recently, post-COVID-19 was referred to in a similar manner.
“This disease, it has many faces, and we’re just starting to scratch the surface of what convalescence is like,” Dr. Reynold Panettieri Jr., a pulmonary critical care physician and director of the Rutgers Institute for Translational Medicine and Science reported in a story four days ago in the Chicago Tribune. Panettieiri reported that many people having trouble recovering are younger, some are athletes, and major underlying medical conditions can’t explain their illness.
Major Health Organizations Not Getting It Yet
With all this media coverage, it’s somewhat surprising (or is it?) that the really big health organizations have uttered nary a word about problematic recoveries. The only “long-haulers” the CDC appears to provide support for on their website are truck drivers.
So far as I could tell, neither the CDC nor the World Health Organization (WHO) websites mention the problem of long-term recoveries or chronic illnesses on their websites. The most Dr. Maria Van Kerkhove, the technical lead for the WHO’s pandemic response, could muster up during a press call last week was: “They may feel quite fatigued for some time”.
Fatigue, though, can hardly describe the utter exhaustion that many feel. Three months after one 27-year-old became ill, she reported that just in the past couple of weeks has she been able to get from her bedroom to the living room.
Another fit, healthy 32-year-old, reported: “I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards.”
Why Anthony Fauci is not using the threat of long COVID-19 recovery times to get younger people to practice more social distancing and mask wearing is a mystery to me.
Update 7/9/2020 – A couple of days later at a news conference organized by the International AIDS Society Anthony Fauci did indeed refer to both a post-COVID post-viral syndrome, and to myalgic encephalomyelitis.
“There may well be a post-viral syndrome associated with Covid-19, If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery. There are chat groups that you just click on and see people who recovered that really do not get back to normal,”
Fauci also reportedly said the symptoms (brain fog, difficulty concentrating and fatigue) resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.
And what about Francis Collins? Now referred to as “Anthony Fauci’s boss” Collins just participated in an excellent and lengthy interview on the coronavirus in the New York Magazine. His thoughts on the vaccine situation were fascinating. A public statement on the “long-hauler” situation, though, would be helpful.
Familiar Hypotheses Popping Up
Several hypotheses that have been put forward to explain why ME/CFS and fibromyalgia (immune activation, dysautonomia, small nerve fiber problems) are starting to show up for COVID-19 survivors.
Some believe the virus may still be present but is undetectable. Others believe the virus has unleashed a devastating immune response or has discombobulated the immune system in some way. My favorite is that the virus has damaged the autonomic nervous system.
Dr. Putrino of the Mount Sinai Health Center believes 5% to 15% of all COVID-19 patients may suffer from dysautonomia. Serena S. Spudich, chief of neuroinfectious diseases at Yale, believes the small nerve fibers in the skin and elsewhere, that relay sensory and autonomic signals, have been affected in somme people. She’s launching a long-term study that’s following COVID-19 patients with neurological problems.
Post COVID-19 Studies
“The more we learn about coronavirus, the weirder it gets” Tim Spector – COVID Symptom Study Lead
A major stumbling block for us right now is the lack of hard data. We’re swimming in anecdotal stories with little hard data available on prevalence, illness state, etc. Some major studies are underway, though.
The COVID Symptom Study, created by Harvard, Kings College and Stanford researchers, which is following 4 million people, reported that ten percent of people with COVID-19 are still sick three weeks later. They reported that “people with mild cases of the disease are more likely to have a variety of strange symptoms that come and go over a more extended period. The Symptom Study lead, Professor Tim Spector of Kings College, stated that: “the more we learn about coronavirus, the weirder it gets”.
Two Large NIH Studies Provide Hope
Two major studies following the trajectories of COVID-19 patients are thankfully underway. While they don’t include ME/CFS, they are big well-funded studies at reputable institutions. Dramatic increases in understanding what happens to turn an infection into a chronic illness should be expected.
The Longitudinal Immunological Impact study taking place at the University of California San Francisco is taking a deep dive into the immune systems of COVID-19 patients. The Mercury News reported that the two-year study has already banked thousands of vials of immune cells, plasma serum and saliva specimens and shared them with 12 different research teams.
Thus far, the 2-year T-cell and immune study is producing findings that generally align with what we suspect in ME/CFS: T-cell depletion, signs of immune exhaustion and increased levels of pro-inflammatory cytokines. The researchers appear to be well acquainted with ME/CFS.
Huge NIH Immune Study Underway – A National Institutes of Allergy and Infectious Diseases (NIAID) study that will track at least 1,000 COVID-19 patients will assess their immune responses, their viral loads and do a variety of multi-omic assessments. They hope to provide “deep insights into how infection by SARS-CoV-2” produces disease-perturbed networks”. This study will establish high quality biorepositories and is projected to end in 2022.
We need more – we need studies that assess brain functioning, autonomic nervous system functioning and exercise capacity.
Avindra Nath’s Intensive COVID-19 NIH Study while small – just 40 people, is going to partially fill that bill. Nath’s small study is intriguing in a couple of ways. For one, the week long intensive study is going to piggyback on what’s he’s learned during his even more intensive two-week long ME/CFS intramural study.
We haven’t heard much about what Nath’s found in the ME/CFS study, but since he had to use the results from that study to get the NIH to fund the COVID-19 study, he’s clearly found enough to get the NIH interested in doing a similar COVID-19 study. That intensive study was projected to provide a kind of Rosetta stone for future work on ME/CFS at the NIH. Perhaps it’s working out…
Five Year NIH Study – Although I couldn’t find it in the NIH Reporter site, the NIH is reportedly launching a platform to collect COVID-19 patient data “including demographics, symptoms, medications, lab test results, and outcome data over a five-year period.”
Open Medicine Funded Stanford/Harvard COVID-19 studies – will seek to get at the molecular changes underpinning the shift that occurs as COVID-19 patients fail to recover.
Uppsala COVID-19 Center Study – Jonas Bergquist of the Uppsala ME/CFS Research Center is engaged in a long-term effort to monitor the sickest COVID-19 patients “who require(d) the most advanced intensive care” from neurointensive care units. It should be noted that people this sick – people who may have organ damage or terribly low oxygen levels or who have been on ventilators – start off their COVID recovery periods with problems which few people with ME/CFS have. Studies show, for instance, that people put on ventilators often have long-term health problems. Since the researchers are looking for the same neuroinflammatory markers and nerve cell markers they’ve found in ME/CFS, though, finding those in these very sick patients could be significant indeed.
Huge U.K.COVID-19 Followup Study Will Likely Not Help – The U.K. kind of stuck its head in the sand when it decided that its 10,000 person Post-Hospitalisation COVID-19 Study (PHOSP-COVID) will only study hospitalized patients. Applauding the creation of the study Health Minister Matt Hancock stated “we should also look at how COVID-19 impacts on the health of people after they have recovered from the immediate disease”. Let’s hope he means what he says, and the U.K. will follow up with another study of non-hospitalized patients.
COVID-19 Tracking Studies and Patient Registries – Our Tickets to Better Funding?
A hugely promising development concerns the appearance of COVID-19 registries that will track patients over time. If this all works out we should have mountains of data on the prevalence of post-viral illnesses after COVID-19.
More importantly for us, if the coronavirus pandemic does create a large cohort of people with an ME/CFS/FM-like illness, these registries could be invaluable in helping us validate the need for more funding. After all, after six months, many of these patients will presumably fit the criteria for ME/CFS. Researchers, the medical profession and the public will know that post-infectious ME/CFS is a serious illness.
Solve ME/CFS Patient Registry – has integrated a COVID-19 questionnaire to track the impact of COVID-19 on the health of people with pre-existing ME/CFS. Solve ME/CFS has also initiated partnerships with established COVID-19 registries and apps to include questions that ask participants whether they have developed post-viral ME/CFS-like symptoms. If they answer yes, they will be referred to You + M.E. so they can provide more comprehensive information.
HERO ( Healthcare Worker Exposure Response & Outcomes) – Duke University is following 15,000 health care workers (600 have died of the virus). The goal is to follow 100,000 people and the projected duration of the study is, get this, up to 79 years :). Does it get any better than having health care workers – so often our bane – validate the seriousness of post-viral illnesses (i.e. ME/CFS). (And what better allies to have?)
Stanford COVID-19 Registry – is open to people who have tested positive or negative for COVID-19, people who may have or had COVID-19, people who do not have or never had symptoms of COVID-19: i.e. it’s open to just about everyone!
The Center for Post-Covid Care – the Mount Sinai Health System in New York City is monitoring about 1,000 post COVID-19 patients who had mild to moderate initial symptoms.
- American Heart Association – COVID-19 Registry – focused on heart issues in COVID-19 patients
- COVID-19 Registry
- American Society for Microbiology Registry
- ACR Covid-19 Brain Imaging Registry
- The Center for Post-Covid Care – the first Center devoted entirely to post Covid-19 patients has opened at the Mount Sinai Health System in New York City. Hopefully we will see more Centers opening up.
- COVID-19 Recovery Awareness – provides regular updates on media articles
- Body Politic – COVID-19 Support Group
The media interest is there – and a follow up blog will show that it’s producing results for us. Two big longitudinal immune-based and “omics” NIH studies, and a smaller but intensive study featuring Avindra Nath, plus the OMF-funded Stanford and Harvard “omics” studies provide cause to hope that we may finally be able to catch ME/CFS in the act during that crucial period when an infection somehow devolves into a life-long illness.
They are a good start. We need more and we will hopefully get them as some of the 25 CMDRP grant applications get funded and as more NIH grants get funded as well. One would hope and expect that a well-funded Request for Applications (RFA) grant opportunity to study the long-term affects of COVID-19 will pop up soon at the NIH.
The birth of numerous COVID-19 registries and tracking efforts provides hope that the extent and seriousness of post-viral illnesses such as ME/CFS will finally hit home in the medical community. It’ll be interesting to see if, after six months, the still ill post-COVID-19 patients are given an ME/CFS diagnosis.
Plus, the post COVID-19 issues are already opening new doors in one area that could benefit us greatly – in Congress. A blog on that is coming up shortly.
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.