ILLInet RECOVER Questions & Answers
Joining the Study
1. Am I enrolled in this study if I was invited to this seminar?
To be enrolled in the study, you would have consented. Many people expressed interest in the townhall even if they were not enrolled. You may complete the form indicating an interest in enrolling at ILLInet.org.
2. Are there any more opportunities to join RECOVER studies?
ILLInet is not currently enrolling RECOVER participants. However, other Long-COVID studies led by our ILLInet researchers are underway, including treatment trials. EVERYONE, including individuals who are not eligible to enroll in the RECOVER study, is invited to submit your name and contact information at ILLInet.org; if you do, we will send you information about what we are learning, invite you to townhalls, and related studies – including upcoming clinical trials to test treatments that may work to lessen symptoms from Long COVID or to prevent Long COVID.
3. Will you reopen for new participants anytime in the future? I tried to enroll in the study and was told it was closed.
There were different types of patients that we were asked to enroll. ILLInet is not currently enrolling RECOVER participants. However, other Long-COVID studies led by our ILLInet researchers are underway, including treatment trials. EVERYONE, including individuals who are not eligible to enroll in the RECOVER study, is invited to submit your name and contact information at ILLInet.org; if you do, we will send you information about what we are learning, invite you to townhalls, and related studies – including upcoming clinical trials to test treatments that may work to lessen symptoms from Long COVID or to prevent Long COVID.
How the Study Works + Tests
I started the study as someone who had never had COVID, but contracted it later. Does that change my track in the study?
The answer is “it depends”. If you enrolled in the study without having had COVID and developed COVID for the first time during the study, please contact us as soon as possible to let us know. You may be asked to schedule an in-person appointment. Your survey questions may also change. If you have other questions about this, please contact the study team at info@ILLInet.org or call 855-461-8185 (Chicago) or 309-233-0299 (Peoria) so that we can assist you.
As the study continues, will sites be added for in-person visits?
No additional sites are currently planned for the RECOVER Cohort study, but additional sites for the clinical trial are expected. See the national RECOVER website for information about all sites.
Tier 2 + 3 Tests
1. Who’s eligible for Tier 2 & 3 tests?
Depending on your medical results, answers to your surveys, if you get infected/reinfected with COVID, or if you were randomly selected, you may be asked to complete additional in-person medical exams. Anyone can be eligible for different tests depending on survey answers, lab results, randomized selection and other factors.
2. Does this research program have any specific tests for brain fog?
One test we are currently running for RECOVER includes the NIH Toolbox Cognitive Function Test. This, however, is just a screener rather than a test to diagnose brain fog. Our University of Illinois’s Hospital Psychology Department clinical partners perform this screening test onsite.
3. Is there a diagnostic measure of brain fog or executive function? I have increased difficulty with word recall, completing tasks, organizing my thoughts, and everything people describe as brain fog.
4. Why has [the smell] test not evolved since the inception of COVID? How is it useful in a sense that of the 4 to choose from, the majority of the time, what I smell is not even remotely close to what I have to choose from, so I'm lying because we have to answer?
Thank you for raising this issue. We have brought up to the national study leadership at New York University, which is serving as the Clinical Science Core for the RECOVER study, that the wording of some questions may not be capturing all the information we need. Until this can be addressed, the ILLInet RECOVER team has implemented the following temporary solution:
For a particular question, if none of the response options are adequate, then leave the response blank for that question, and ask to speak to the study coordinator about completing the “Additional information form” developed by the ILLInet RECOVER team. In this form, write down the question #, provide the answer you would like to use, and tell us why the current response options are inadequate. If you would like to speak with the lead study doctor, please also indicate this on the form.
We apologize for the extra work, but this temporary solution will allow us to collect the information we need to discuss with the Clinical Science Core and other members of the study leadership to determine the best option moving forward. We will also keep you informed about the status of this request to modify a study symptom question, if you are interested.
5. Is there testing to determine if [my experience] is Long COVID or just a "migraine"? I had COVID on 1/5/22 and had a stroke on 2/25/22. The doctors are saying it was only a migraine; however, I have had changes in the electrical activity of my heart and a superficial blood clot since.
We do not yet have a diagnostic test for Long COVID. We recommend you see a Neurologist or get a second opinion if you need more information. The best tests for stroke are an MRI of the brain and the blood vessels in the neck and head. Neuropsychology testing is the best test for any type of thinking problem (such as brain fog).
6. Does Peoria have the new Tier 2 tests (such as the vision test, smell test, etc.)?
7. If we triggered a fibroscan, but we're in Peoria (OSF), do we travel to Chicago for it?
No, you will have the fibroscan in Peoria when the test becomes available.
1. What have you learned so far in the Long COVID study? Are there some high-level results you can share?
Here’s the link about published results to date from the RECOVER study: recovercovid.org/recover-results
Also, the national RECOVER website includes links to recorded research webinars (RECOVER Research Review (R3) Seminar Series): recovercovid.org/r3-seminar-series
Please visit the news and events section of the national RECOVER website for more information.
2. Are there any studies dedicated to developing diagnostics?
The current efforts are focused on understanding how to define Long COVID, why Long COVID develops (pathogenesis), and whether there are different types of Long COVID. This information is needed to develop diagnostic tests. In the interim, an ad hoc committee developed by the National Academies of Science, Engineering, and Medicine is developing a working definition for Long COVID; there are opportunities for public input into this process. See: nationalacademies.org/our-work/examining-the-working-definition-for-long-covid
3. Are you seeing Long COVID occurring at the same rate over time as variants change? Do you believe that Long COVID varies based on the COVID variant?
The available information from studies to date indicates that the risk of Long COVID varies according to the variant that caused the infection. Confirmatory studies are underway through the RECOVER Initiative.
Preliminary evidence suggests that the risk of Long COVID varies by COVID Variant. Several studies are underway to address this question specifically – expect to hear something about this in the coming months.
4. How is UI health sharing its findings with the broader healthcare field, so general practitioners develop a deeper understanding of Long COVID? The pool of those who really understand this still needs to be deeper (thus, the long lines at the Long COVID clinics). We need more knowledgeable primary care doctors in the mix.
We are using several strategies, but know that we need to do more both locally and nationally:
- UI Health monthly Post-COVID Clinic Grand Rounds where providers share new information related to Long COVID research and patient care. These meetings are attended by primary care providers, and specialists, including Neurology, Pulmonology, Cardiology and Family Medicine to name a few. Past topics have included brain fog and post-exertional malaise.
- We publish research articles based on findings in Chicago as well as part of the national Research study.
- We contribute to webinars hosted by groups in Chicago and elsewhere; for example, “COVID-19: Looking Back and Looking Forward,” hosted by the Institute for Science and Policy at the Denver Museum of Nature & Science: institute.dmns.org/events/covid-19-looking-back-and-looking-forward
- We, along with the other Hubs that are part of the RECOVER initiatives, are in discussions with the Agency for Healthcare Research and Quality and others to develop educational programs and materials in collaboration with primary care providers more broadly.
We also recommend reviewing information available through the national RECOVER website.
Symptoms + Trajectory
1. Why are some people getting longer COVID than others? Do you have people in the study that have had Long COVID for over a year?
Yes, we have enrolled people who were infected early in the pandemic and those who were infected in the last 30 days. The duration of Long COVID in the RECOVER study varies. We do not know why some people have Long COVID-related symptoms for longer than others – the RECOVER study is working to answer this question. Here’s the link about results to date from the RECOVER study: recovercovid.org/recover-results.
2. Does the study reveal anything about hives due to COVID or a vaccine?
We do not yet have an answer to questions about hives. We will post an update from the RECOVER study, when available. Here’s the link about results to date from the RECOVER study: recovercovid.org/recover-results
3. Have you seen High Sensitivity C-reactive protein (CRP) levels in participants with Long COVID?
Yes, we have seen hsCRP elevations. We don’t yet understand what this means or what happens over time – we will be looking at this carefully as part of the RECOVER study.
4. Have you seen endocrine (hormone) problems with Long COVID? Hypothyroidism (underactive thyroid)? Exocrine pancreatic insufficiency? Hypogonadism (failure of reproductive organs)? Pituitary gland problems?
Yes, we have seen a range of endocrine problems. That’s why we are testing for this and storing blood and other biospecimens.
5. Have you seen any patients have tachycardia (rapid heartbeat) and shortness of breath after sleeping flat on their backs? I have heard of Postural orthostatic tachycardia syndrome (POTS) — the feeling of lightheadedness, fainting, and rapid heartbeat triggered when a person stands up after lying down — as being a Long COVID syndrome.
Yes, we are hearing that some patients develop POTS after COVID. The RECOVER study is intended to answer a range of questions, including the risk of POTS (how likely is it to develop POTS) and what happens after people get POTS, why people get POTS, and what can be done about it.
6. Should I go to the UI Health Post-COVID clinic for care? I believe I have POTS; unfortunately, I missed the enrollment window.
7. My hair is falling out; what should I take?
Yes, some people develop hair loss as part of Long COVID. The reason is not known. We don’t currently have proven-effective therapies for Long COVID. But the RECOVER study plans to test different treatments in clinical trials very soon.
8. What is the difference between CFS/PEM symptoms and Long COVID symptoms?
Studies are underway to understand how ME/CFS differs from or is similar to Long COVID. We don’t have an answer to this question yet.
9. Are you looking at whether Long COVID is “re-awakening” the dormant Epstein-Barr Virus from a prior infection? I heard recently that there is some emergent research on this.
Studies are underway about the causes of Long COVID, including the RECOVER study. We don’t have an answer to this question yet.
10. Is there evidence of accelerated eye disease with Long COVID? I had a “large hemorrhage” in my eye (a new phenomenon) and tested positive for COVID on Friday. Bleeding occurred on Tuesday after Friday’s positive tests.
It seems like almost anything can happen as part of Long COVID. We want to know how many problems people have and which problems are common and which are rare. More importantly, what can be done about it? That’s why the RECOVER study is so large. Even if you are not eligible to enroll in the RECOVER study (at this point, the study is only enrolling people with newly developed COVID), please join us at ILLInet.org, and we can send you newsletters and information about related studies.
11. Will there be any way to determine if I had an undetected case of COVID before 2022 that is causing my ongoing health problem?
Many patients had COVID before tests became available. As part of the RECOVER study, we will ask you about your history, including whether you might have had COVID before the most recent test. It may be difficult to tell for sure whether you had COVID in 2021 with current tests, but the biospecimens we are collecting may be able to help us in the future.
12. Do you have any information on parosmia caused by covid. I’ve been suffering from this condition for 2 years and it’s changed my life.
Parosmia is a condition where a person’s sense of smell no longer works correctly. Parosmia can be caused by infections like COVID-19, head injuries, or other neurologic conditions. Parosmia happens in some, but not all people with COVID-19, and can last a few days to months or longer. We do not yet know why there is so much variability in parosmia after COVID-19. The RECOVER study is examining parosmia and other COVID-19 related symptoms and hopes to answer questions about why some people develop these symptoms and what can be done to prevent or treat it.
Long COVID Treatment
Is the UI Health Long-COVID Clinic accepting new patients, and if so, what’s the wait to get an appointment? At the University of Chicago and Northwestern, it's a 3-4 month wait right now to see a doctor for a screening.
UI Health Post-COVID clinic is accepting new patients. The wait varies according to the doctor you need to see. For more information, please visit IU Health’s Post-COVID clinic website.
Brain Fog treatment
1. Do you have recommendations on supplements to assist with Brain Fog?
We do not yet know enough to make evidence-based recommendations about supplements.
2. I'm interested in rehab options for the cognitive impacts of Long COVID.
UI Health Post-COVID clinic is accepting new patients. The wait varies according to the doctor you need to see. For more information, please see visit IU Health’s Post-COVID clinic website.
3. Do you recommend Vyvanse, a prescription medication to treat Attention-Deficit/Hyperactivity Disorder (ADHD), to assist with Brain Fog?
We don’t currently have proven-effective therapies for Long COVID. But the RECOVER study is planning to test different treatments in clinical trials very soon. Feel free to contact firstname.lastname@example.org for more information about clinical trials.
4. Is there something that I should be directing my therapist to do about my brain fog during my sessions? Emotionally, it's being addressed, but is there something else?
We don’t currently have proven-effective therapies for Long COVID. But the RECOVER study plans to test different treatments in clinical trials very soon. So, you could ask if your therapist could refer you to clinical trials sponsored by the NIH, as part of the RECOVER program. Feel free to contact email@example.com for more information.
How has Long COVID changed over time? What is being learned about different Long COVID symptoms?
What if you have most of the Long COVID symptoms but never had COVID?
We are learning that many infectious diseases can lead to chronic health problems. Long COVID is due to SARS-CoV-2, the virus that causes COVID. Long COVID symptoms are non-specific, meaning that other infections could lead to the same symptoms. Please see Choutka, J., Jansari, V., Hornig, M. et al. Unexplained post-acute infection syndromes. Nat Med 28, 911–923 (2022). https://doi.org/10.1038/s41591-022-01810-6
1. Will there be treatment trials in Illinois? If so, when might those start?
Yes, clinical trials will be starting soon in Illinois; UI Health will be among the first sites in Illinois to conduct clinical trials. The study planning is underway, and we are getting input from patients, FDA, and others.
2. Are researchers looking at the link of women with endometriosis, PCOS, and Long Covid? I’m seeing increased research talk online about this.
The RECOVER cohort study is collecting information about polycystic ovarian syndrome (PCOS), but not specifically endometriosis. For more information about the types of information collected in cohort study questionnaires, see: recovercovid.org/protocols
For more information about pathobiology studies being done by the RECOVER study, please see: recovercovid.org/pathobiology
3. Will the RECOVER studies only look at those who contracted COVID early in the pandemic or only those who contracted in later years too?
The RECOVER studies include people who developed COVID since the early period of the pandemic.
4. Will there be more trials for individuals who never contracted COVID it was someone who was interested in seeing if they had some kind of super immune system?
The RECOVER studies will be examining why some people developed COVID-19 and others did not, including if there are differences in the host response (immune response).
5. Will there be a genetic-based clinical trial in the future?
The RECOVER studies will examine if a person’s genes affect their host response (immune response) and risk of developing Long COVID.
6. Will we have to intentionally look up and register for any relevant trials or will UIC reach out and ask if we are interested in a trial?
UIC will contact RECOVER participants about opportunities for clinical trials. You do not need to contact UIC, but we are always willing to hear from you if you have questions or specific interests. Send an email to firstname.lastname@example.org or call us at 855-461-8185.
1. Are the clinical trial medications safe for other things or brand-new?
In most cases, the medications that are being tested for Long COVID have been approved by the FDA for other conditions. For example, ritonavir-nirmatrelvir (also known as Paxlovid) was approved by the FDA for the treatment of mild-to-moderate COVID-19 in adults who are at high risk for progression to severe COVID-19, including hospitalization or death. The VITAL clinical trial is now studying the harms (safety) and benefits of using Paxlovid in treating people with Long COVID. The VITAL clinical trial will enroll many hundreds of people, which will allow us to more quickly understand the harms (safety) and benefits of Paxlovid when used for Long COVID. More information about the various clinical trials can be found at: https://trials.recovercovid.org/design
A Data and Safety Monitoring Board made up of an independent group of experts will monitor participant safety in all the trials and provide recommendations.
2. Many Long COVID studies I applied to were limited to those with a recent infection. Will those of us battling Long COVID symptoms for multiple years after infection be eligible for the clinical trials?
The RECOVER trials are not limiting people who were only recently infected. More specific information about eligibility is available at: https://trials.recovercovid.org/design
1. I am interested in participating in the VITAL clinical trial. However, I’m not in the RECOVER observational study. How do I sign up?
Email us at email@example.com and we can help determine your options.
2. Do the researchers feel that taking Paxlovid for 35 days is too short of a trial to be effective since antiviral treatment for post-viral disease typically requires 7-8 months to show effectiveness?
This is a good question. We do not know yet if Paxlovid will help people with Long COVID and how long to use it. We are following people after they have finished their treatment course of 15 and 25 days of Paxlovid. The study team wants to avoid taking medicine longer than needed as it could also increase the risk of side effects. If Long COVID symptoms get better or are completely gone after 15 to 25 days, but come back or get worse after completing the study treatment, then the study design may change to test longer treatment periods.
3. If we have taken a 5-day Paxlovid course for a second COVID infection, would that affect my eligibility?
The study doctor may ask you to wait at least 14 days since the last day you took Paxlovid before signing up for the study.
4. Are sugar pills used for placebos? I don't want to take in more sugar!
According to the study protocol version 3.0, the placebo tablet includes microcrystalline cellulose, NF (MC-102); pregelatinized starch, NF (Starch 1500); croscarmellose sodium, NF (Vivasol, GF Grade); colloidal silicon dioxide, NF (Aerosil 200); and magnesium stearate, NF (2257). The placebos are sometimes called “sugar pills” for historical reasons, but the placebo used in the VITAL study does not contain sugar (also known as “sucrose”).
VITAL study protocol: https://trials.recovercovid.org/documents/RECOVER-VITAL%20Protocol%20V3.0.pdf
Are there control arms for the neurocognitive trial?
Yes, there is a comparator group, or “control arm”. Participants will be assigned by chance to either an active treatment group or an active comparator group. Learn more about the RECOVER-NEURO clinical trial at trials.recovercovid.org/neuro.
How will patients be screened for post-exertional malaise (PEM) for the ENERGIZE arm in this clinical trial?
More information about the ENERGIZE STUDY has yet to be made available. Dr. Zimmerman is the Principal Investigator of Duke Clinical Research Institute, which was selected to oversee all clinical trial studies for RECOVER. For more information about the study, please go to: https://recovercovid.org/contact.
Funding + Financials
STAT News reported (Source: https://archive.li/tfewI) that funding for RECOVER has spent most of the allocated funding. What is ILLInet’s plan, or the federal consortium of RECOVER, to secure future funding for trials or more studies?
Questions about funding should be addressed to https://recovercovid.org/contact-us.
Contacting the ILLInet RECOVER Study
I'm in the RECOVER study, but didn't receive the townhall invite.
Sorry to hear that you didn’t get the townhall invite, but happy that you joined! We have found that emails sometimes go to Spam/Junk folders. If possible, mark our emails as safe or recognized. You may also add RECOVER@uic.edu (no reply email address) as a contact. Please emails info@ILLInet.org if you would like a response. For attendees that shared their email in the chat, we are following up on a case-by-case basis.
If you have additional questions, please email us at info@ILLInet.org.