(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.
Michael Sievert has worked in the federal government for over 30 years – mostly with the National Science Foundation
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.
THANKS! Excellent article!
What a great blog post, Michael! Thank you for participating in the study and for putting us in the loop from your various perspectives. I too am hopeful that this deep dive into long COVID will yield benefits for our ME/CFS community. It’s been a long time coming. Best wishes for a complete recovery for you.
Thanks Michael. I’m somewhat nervous to own up that it isn’t just the scientists who are inappropriately excited about Covid. I suspect I’m one of many in the mecfs community whose main thought on seeing that Covid was spreading beyond control in rich countries with great science was that finally there would have to be proper research funding for our disease and we would have a cure or useful treatments. By March 2020, we knew what was coming. At a personal level, though, I’m very sorry that decades of severe underfunding of mecfs has meant you have had to join our community. It is an awful disease. Keep resting and pacing, at only 8 months in there is still hope of natural improvement.
Hello Elinor, thanks for the comment. I understand your point about the funding, and I hope the positive steps we’re seeing now are sustained going forward. Actually, let me rephrase that… I hope that the research solves this riddle sooner rather than later and obviates the need for funding at some not-too-distant point in the future. Both the long hauler and the budgeteer in me would be very happy with that outcome. Michael
Thank you Mr. Sieverts for participating in this vital research. Many of us who have ME/CFS have waited for decades for the NIH recognize and affirm the gravity of this disease and allocate the necessary funds we have needed for research. We all hope it will finally happen. We hope we will have answers and possible treatments. Most of us have had to educate our own physicians about this disease. Most of us have tried many over-the-counter treatments as well as prescribed medications in an effort to improve our health. We are enterprising, but we desperately need enlightened research from professionals as well as enlightened physicians to care for us. It’s been 46 years for me and I still have hope. Again, thank you!
Hello Nina, well said. It makes me think of that proverbial quote about standing on the shoulders of giants. I know that all of us with Long COVID are benefitting immensely from the awareness and the advocacy that this community had advanced for decades. We’ve still had to deal with gaslighting and the like, but I imagine it’s been to a much lesser degree than what you and others have faced over the years. I know karma can be a frustrating concept when you’re on the front end of it, but I fully recognize how much has been built up in this arena.
Thank you Michael for taking the time to write this article. I REALLY appreciate hearing you are receiving validation from the medical field! It actually brought tears to my eyes!
I never fully recovered after getting mono at the age of 12 years old… over 30 years ago. For me, not receiving ANY validation from my Drs, family & friends for over 2 decades was surely the hardest part of dealing with this illness.
Even though I am MUCH better now, I feel a responsibility to help spread awareness/knowledge about this awful disease – the biggest motivator is the constant reminder, no child should have to go through this alone. Which is what happens when a Dr does not have the knowledge (that seems to be spreading) & think everything looks “normal” from standard lab values & that means everything is “ok”. It’s understandable that parents would then believe the “experts”.
I feel awful that you and many others are dealing with this awful disease. Gosh, even when you said your fatigue was “crushing”… it gave me the chills. I thought, he REALLY gets it! 🙁
I am sooo sorry this is your reality right now!
BUT… Michael, for the 1st time ever, I can actually talk to ANYONE and explain my long health journey w/ CFS and ask “you have heard of COVID long-haulers, right? Well, I got sick from a virus too and never fully recovered.”
AND EVERY SINGLE person has said YES! And I see they instantly understand.
I highly recommend you look into working with a functional medicine practitioner, someone who specializes in people with “crushing” fatigue. I worked with well over 100 different practitioners over the 3 decades but did not find long term healing until I went that route. Take care of yourself! Thank you again!
Thank you for this write-up Cort!
For clarification – and apologies if this was officially stated elsewhere, but to my knowledge, the ME/CFS Intramural Study by Dr. Nath was paused when the COVID-19 outbreak began.
Did it officially resume with only Long COVID patients then? Did it resume after the initial pause resuming with ME/CFS patients included with Long COVID patients?
As far as I know it’s paused. If it still is I imagine it will open up in the not too distant future, though. Nath did say the pause gave them the opportunity to start to go through all the data they’d collected.
Nath has at least three ME/CFS and/or long COVID studies going. The neurological study that Michael is in, a long COVID study similar to the ME/CFS one, and the ME/CFS one. I’m not clear at this point which of Nath’s long COVID studies people with ME/CFS are also in.
I was shocked at all the data being collected in the study Michael is in. It far exceeded what I thought they were doing 🙂
My understanding is that it is paused, and the comparison cohort of ME/CFS patients I mentioned above is drawn the info collected thus far (e.g. pre-pandemic). Per your two questions about how it will resume, I don’t know the answer. I do know enough from my conversations with Dr. Nath’s team to know that it will resume, as they have mentioned it, but beyond that I don’t know much, esp. re: how it will relate to the Long COVID studies.
Thank you Michael for your reply & for sharing your experience! I really appreciate it.
I’m filled with hope that advances from this study will benefit all of us! I hope Dr. Nath gets support with this in-depth analysis in a number of ways – in bandwidth & funding measures as we go forward.
I can’t imagine that we’re not going to learn significant things from Nath’s study and the OMF’s severe ME/CFS study. Two very, very in-depth studies. As I remember Nath said he’d never been involved in such a comprehensive study.
Nath has a lot on his plate! I hope he’s taking care of himself (lol)
Thanks Michael, for taking the time and energy to report from the frontline of Dr Nath’s Long Covid study. I read your article last night (I’m in Ireland) and was trying to work out my reaction. Your account is energetic and enthusiastic and I’m so glad you feel validated, listened to and that being a part of Dr Nath’s study seems to have given your experience greater credibility with your own doctors.
I suppose I’m left wondering that this doesn’t sound like the NIH we usually hear about – the pitiful funding for ME/CFS research over decades, leaving many people with the illness, chronically unwell, forgotten, poverty stricken and marginalised in every sense.
I don’t want you to feel I’m criticising you Michael, I just think the NIH could do with a blast of fresh air flowing through it and your article gave me a sense of that…
Tracey Anne, I appreciate your mentioning “the NIH we usually hear about.” I can’t speak to the history embedded in that phrase. I have my own history with NIH, and it’s as colleagues over the course of my career. I also have my own history as someone who’s been on the receiving end of criticism for decisions on priorities for research funding. In my case, it may have been geologists or astronomers directing their ire, so I know the level of intensity and immediacy would have been very different than what my NIH colleagues have faced. Still, it’s one of more frustrating and certainly one of the least constructive aspects of the work, and I’m lucky that for me it rarely went beyond one budget cycle. I think this is just a roundabout way for me to say I hope I can help us as a community get to a point where our relationship with NIH is not defined by that history. Here’s to that blast of fresh air.
Thank you for your honest response Michael, I really appreciate it. I feel there are so many positive movements happening now. Your contribution in being so proactive in becoming involved in Dr Nath’s study and writing about your experience here, I feel, adds to that positive energy.
“ 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.”
I have my doubts that the NIH fully understands the reality that ME/CFS patients experience. Don’t forget not so long ago they invited Edward Shorter to make a presentation at the NIH about ME/CFS. The people that invited him are still around and they have not repudiated their decision to invite him.
As Ronald Reagan used to say: “Trust but verify.”
In response to Marc S’s comment, I noted earlier that I recognize that there’s lots of baggage in this relationship. How we carry that baggage is up to each of us. I am nonetheless surprised by your comment about NIH not understanding what we experience. I though the work noted at the link below was very thorough and thoughful, esp. since it focused so directly on the patient experience. https://www.nih.gov/news-events/news-releases/nih-study-details-self-reported-experiences-post-exertional-malaise-me-cfs
Here’s to this indeed:
“I hope I can help us as a community get to a point where our relationship with NIH is not defined by that history. Here’s to that blast of fresh air.”
Michael, Thank you so much for your positive article. Knowing how long it takes for research to lead to treatments, I’ve learned to lower my expectations and to simply be satisfied with the validation. I got a vicarious sense of appreciation when you wrote about how validated you’ve felt to work with researchers who understand that CFS/ME symptoms are real. I also connected to your sentence that you “love exercise,” so how could it be resulting in such debilitating symptoms? (“I love exercise” is a great mantra, even while doing less.) I’m going to use that sentence with my doctor. I also appreciated your writing about how doctors must also be confused by all this, which helps me reframe my own doctor’s apparent frustration/impatience with me as her own frustration with having no tools to help. In many ways, my worsening flare-ups of CFS/ME after vaccines in the past 3 years have become a rite of passage into this older (age 67) stage of life. While I do believe the initial trigger was a virus (Epstein-Barr, or any others that remain in the system like varicella-zoster) plus genetic predisposition, I believe strength comes from our ability to adapt—both physically and psychologically, even if it’s not to the same levels as we previously had.
Hi Cort, In case you haven’t heard this–I’ve already shared it with people who ask about my experience.
Thanks so much for your work on our behalf! Anne
ugh here’s the link: https://www.wnycstudios.org/podcasts/deathsexmoney/episodes/mason-earle-death-sex-money
A Former Pro Climber On Enduring Chronic Illness
May 19, 2021
Mason Earle’s rock climbing career ended in 2018, when he was diagnosed with a chronic illness. In three conversations, he told me how his life changed and why he doesn’t miss climbing.
Thanks so much, Anne! A “professional rock climber” – you know that guy was in great shape, he was mentally strong and tough. This guy put himself again and again in a position where if he made a mistake he could be dead. Now his nervous system can’t handle the screech of a door opening.
That’s about as validating as it gets. If it could happen to him – it could happen to anyone.
He even did free soloing – no net at all beneath him…whoa!
Given my love of everything outdoors these are the kind of stories that really move me. It reminds me of this one:
A Winter’s Tale – A Former Mountain Climber Reflects on Post Exertional Malaise and ME/CFS/FM …the guy was a winter ice climber…talk about tough..
https://www.healthrising.org/blog/2019/02/05/a-winters-tale-a-former-mountain-climber-reflects-on-post-exertional-malaise-and-me-cfs/
Thank you, Michael, for the thoughtfulness and high intelligence of your essay, and of your further statements in the thread above. Well done!
Thanks Cort & Michael, I’ve just been on a wonderful tour down memory lanes,
following links I’m not sure where from, but climbing and Wales, Bethesda , Ogwen Bank, Carnedd Dafyd , Carnedd Llewellyn, of The Black Ladders & Simon ?X, I was there when my illness took a firm hold Sept 1984 and the best the Consultants could come up with in the Royal Surrey hospital where I worked in the path lab was Migraine & Depression, I agree with the Migraine, I already had been dealing with that since childhood. This was a time when ME/CFS was Yuppie Flu, HIV was about and the HepB vaccine was just out and I and my collegues declined. My history too was outdoor pursuits, walking, climbing, canoeing, sea & white water, caving, recurrent tonsilitis which was written in my notes and crossed out and substituted with ,sore throat’ after the doc noticed I’d had a tonsillectomy to ‘resolve’ a bad case of mono in 1973.! I just found ?EBV in my notes last year from 1973 after 2 bad reactions to antibiotics. Apparently that’s how docs used to diagnose EBV from the antibiotic rash! I discovered Dr Sarah Myhill in2015 & again in2017:- Brain Fog!
2017/18 was also when I discovered Health Rising & Living with CFS after Googling Aphasia after my benefits claim was denied, Problems with words just doesn’t desribe the ‘problem!’
Covid was what I needed to slow down and learn how to pace aided by my friend and live in carer, taking the time to appreciate the flow of the seasons & natures’ progress in the surrounding parks and countryside of The Peak District at a leisurely manageable saunter without inducing PEM.
We have instigated Sarah’s protocols of Groundhogs, Basic, Chronic and Acute, with lots of other natural supplements,and Paleo Keto, Our super dooper new analytical scales say we have atheletes’ bodies; if only we felt like that!
We find Dr Jacob Teitelbaum’s SHINE protocol and many of the tips in his 4th Edition From Fatigued to Fantastic a useful adjunct too,
That was a long slow meander! Thanks again 🙂
long slow meanders are great – and I agree – not easy to achieve… Congrats for being able to do “The Peak District” (great name) at that pace :)/