(After over 30 years in science policy, Michael Sieverts never dreamed he’d be the one in a study, but there he was, roughly 8 months after coming down with long COVID, in Avindra Nath’s neurological long COVID study. Thanks to Michael for sharing his story)
When I agreed to participate in studies of Long COVID at NIH, I may have paid too much attention to two sentences on the consent form. The sentences are in Q&A format near the bottom of page 7 of the 13-page form.
Q: What are the benefits of being in the study?
A: You will not benefit from being in the study.
I can’t speak to how others might view these sentences. I would understand if someone found them deflating or discouraging. Who would go to a doctor who told you upfront there would be no benefit from your visit? Actually, it would be a doctor who made you sign a statement saying you have no expectation of getting better. Not a great marketing strategy.
I, however, was comforted by these sentences. They spoke to me. More specifically, they spoke to the person I was before Wednesday, March 18, 2020, when the thermometer that I’d had in my mouth for a minute or so told me that I had a fever. And, despite the near certainty on the part of my doctor that it had to be a run-of-the-mill flu, it turned out to be not so run-of-the-mill, and my life has not been the same since.
Those sentences spoke to me because I’ve worked in science and research for over 30 years; not as a scientist, but rather as part of the various processes that go hand-in-hand with government support for research: policy, communications, legislation, budgeting, evaluation, etc. (I’m still involved in this work, but to a much lesser degree.)
My particular expertise has been in justifying taxpayer investments in basic research, the type of research that usually has long timelines and makes no promises about ever being useful. It’s given me a foothold in a cool corner of nerdy wonkdom. I can talk about how gravitational waves are detected, why most meteorites are found at the base of the Transantarctic Mountains, and what geysers in Yellowstone have to do with COVID vaccines.
It has also made me very much at home with that “you will not benefit” statement.
I won’t go into detail about my COVID journey. It was fairly typical by Long-COVID standards: a “mild” case (meaning no hospitalization), but a rough ride with fever and headaches for almost two weeks, along with a metallic taste in my mouth and the smell of burning leaves in my nose.
When the fever was behind me, I naturally assumed I’d soon be back to normal. I started exercising, and when I filled out the daily tracker of post-COVID symptoms, I clicked the “😀” button under “How are you feeling today?” The only thing that was really strange was that I was having strange and worrisome mood swings, but I attributed that to my aggressive use of OTC meds to manage my fever. COVID, in my mind, was in my rearview mirror.
Then, after a few weeks of recovery, I experienced the second blow that many with Long COVID have experienced. It was probably not from the virus itself, but rather from my out-of-whack immune system reminding me who’s boss. For me, the blow came while I was digging up day-lilies, and it had all the markers of a heart attack — brutal chest pains and a shortness of breath that put the SOB in SOB.
When I called my doctor — certain that he would tell me to go to the ER — his first words were something like: “this is what COVID is doing. It hits a second time. You just need to get extra rest and let your body recover.” (I did get an EKG and chest x-ray a few days later, and they ruled out heart attack and pneumonia.)
I devoted a few months to following that guidance of resting and letting my body recover, but I never sensed anything resembling a recovery. By then I’d connected with the Body Politic group on Slack, so I knew I wasn’t alone. And, at the end of May, The Washington Post ran an article by Brian Vastag and Beth Mazur under a headline that is now etched in my memory: Researchers warn COVID-19 could cause debilitating long-term illness in some patients.
That led me to the 2015 National Academies/Institute of Medicine report (Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and I also started reading about the prevalence of ME/CFS among people infected with SARS in 2003. It wasn’t lost on me that the 2003 virus was also a coronavirus, now known as SARS-CoV-1, which infected ~8,000 people worldwide (in comparison to the 167 million infected to date by its younger sibling, SARS-CoV-2).
As I taught myself more about ME/CFS, I noticed that two phrases often appeared in close proximity to the term: “It is not fully understood” and “There are no approved treatments.”
The sentences I quoted earlier are on the consent form for An Observational Study of Neurologic Function after COVID-19 Infection, led by Dr. Avindra Nath at the National Institute of Neurological Disorders and Stroke (NINDS). Dr. Nath is no stranger to anyone who follows Cort and this website. His team at NINDS has been leading a major ME/CFS study at NIH, which Cort wrote about in January. That experience has put them at the forefront of research on the post-viral phenomena we are seeing today.
I was one of the first persons to enroll in this study; I’m Patient 2 in one of the datasets. I actually tried to enroll before there was even a study. In late summer of 2020, when the only adjective I ever used to describe my fatigue was crushing, I started hunting around NIH’s website.
I found an email box on NINDS’ ME/CFS pages, and I sent a note asking whether they were doing anything related to the post-viral fatigue following COVID. That was in early September, and I got a response within a day saying that their studies were still in the planning and approval stages, and they would contact me when they started recruiting. They did, and I signed that consent form on November 4, 2020 during my first visit to the Clinical Center.
This study and others at NIH are still recruiting patients, with an initial goal of comparing people with Long COVID to others. For the NINDS study, I know that the Long-COVID cohort is being compared to:
- people with ME/CFS
- people who had COVID and recovered fully
- people like my wife who were definitely exposed to COVID and never got sick or developed antibodies
- people with autoimmune diseases with similar presentations (like MS)
- to a control group
There will also be comparisons within cohorts, to better understand the effects of the disparities that are as pernicious as they are undeniable.
What’s being compared? My page on NIH’s portal has results from over 100 different tests. Most are various blood tests, but there are also results from a brain MRI, skin punch biopsies, a nerve conduction study, spinal fluid analysis, tilt table tests of orthostatic intolerance, imaging of the blood vessels in my eyeballs, and various other screenings and assessments.
In addition to these tests, information is being collected via on-line surveys, all with an eye toward understanding what is (or is not) noteworthy v/v Long COVID. [Side note: as is typical with ME/CFS, nothing in those test results explains the severity or persistence of my symptoms.]
This is the research that the consent form says is of no benefit to me. If I took those words as gospel, I wouldn’t have much more to say. But my experience goes beyond those words, and the reality is that I have benefitted immensely from my engagement with NIH.
The first benefit I’ve realized is validation. All of us with ME/CFS know how difficult it is to describe what we are experiencing, and sometimes we even doubt ourselves. I still have this argument with myself: “there’s no way exercise should make me sick… I love to exercise… etc.” At NIH, where the banner over the lobby celebrates its most recent Nobel laureate and you encounter amazing and accomplished professionals at every stop, there is no doubt. They understand what is happening both globally and to me as an individual.
That validation stays with me when I leave their building. If my own doctors ever had doubts about the validity or severity of my symptoms (and yes, at first, they did), those doubts disappear when I upload the reports and results from NIH to their respective patient portals. In fact, they begin asking for more information and drawing me out about my experiences. It’s a richer and fuller dialogue, and I think a measure of this validation extends to them. The inadequacy of treatments is understandably frustrating for them as professionals. None of the tools in their toolkits work for us, so I think the fact that “even NIH doesn’t know” takes an edge off of our conversations.
Beyond that, the doctors at NIH make valuable contributions to my care. They don’t write any prescriptions or provide any treatments. If this were a clinical trial, that would be different, as would the consent form. But they are interested in how I’m being treated, and which medications are beneficial, and they give me suggestions and pointers that help me frame questions for my own doctors. It’s a win-win: I have ready access to a second opinion whenever I need one, and they learn more about what’s helping and what’s not.
A final thought: a week or so ago, Dr. Nath delivered a presentation on “Neurological Complications with COVID” for a webinar sponsored by Body Politic. If you haven’t seen it, it’s an hour well spent.
There were, however, a few points in the presentation where there seemed to be an awkward juxtaposition between his excitement about the research and the very real suffering so many of us are experiencing — an unexpected mix of joy and despair.
I’m used to seeing scientists get excited about their work, but it’s one thing in astronomy and another in medicine. But I also know, as he does, that this is exciting science, and the numbers alone make Long COVID different from anything science has ever encountered. That will lead to great research, and I know I will benefit from it. I already have.
*Michael Sieverts has worked for the federal government for over 30 years, with most of that experience at the National Science Foundation (NSF). He was the NSF Budget Director from 2010 to 2017, and he has also held senior positions overseeing financial and grants management and legislative and public affairs. The views expressed in this post are his own and do not necessarily reflect the views of NSF.
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