RECOVER: What Clinical Research Comes Next for Helping People with Long COVID
“I connected with RECOVER to be a part of the answers that I was looking for when I was at my worst.” Long COVID patient and RECOVER representative, Nitza Rochez (Bronx, NY)
People, like Nitza Rochez, who are living with Long COVID—the wide-ranging health issues that can follow an infection with SARS-CoV-2, the coronavirus that causes COVID-19—experience disabling symptoms with significant physical, emotional and financial consequences.
The NIH has been engaging and listening to Nitza and others living with Long COVID even before the start of its Researching COVID to Enhance Recovery (RECOVER) Initiative. But now, with the launch of RECOVER, patients and those with affected family or community members have joined researchers, clinicians, and experts in their efforts to unlock the mysteries of Long COVID. All have come together to understand what causes the condition, identify who is most at risk, and determine how to prevent and treat it.
RECOVER is unprecedented in its size and scope as the most-diverse, deeply characterized cohort of Long COVID patients. We’ve enlisted the help of many patient volunteers, who have enrolled in observational studies designed to help researchers learn as much as possible about people who have Long COVID.
Indeed, thousands of research participants are now providing health information and undergoing in-depth medical evaluations and tests, enabling investigators to look for trends. Additionally, studies of millions of electronic medical records are providing insights about those who have received care during the pandemic. More than 40 studies are being conducted to identify the causes of disease, potential biomarkers of Long COVID, and new therapeutic targets.
In all, RECOVER’s research assets are voluminous. They involve invaluable contributions from many people and communities, including research volunteers, research investigators, and clinical specialists. In addition, millions of health records and numerous related tissues and specimens are being analyzed for possible leads.
At the center of it all is the National Community Engagement Group (NCEG). The NCEG is comprised of people living with Long COVID and those representing others living with the condition, and it is truly instrumental to the initiative’s progress in understanding how and why SARS-CoV-2 impacts people in different ways. It’s also helping researchers learn why some people recover while others do not.
So far, we’ve learned that people hospitalized with COVID-19 are twice as likely to have Long COVID than those who were not hospitalized for infection. We’ve also learned that members of racial and ethnic minority groups with Long COVID were more likely to have been hospitalized with COVID-19.
Similarly, disparities in Long COVID exist within those living in areas with particular environmental exposures [1], and those who were already burdened by other diseases and conditions—such as diabetes and chronic pulmonary disease [2]. We’ve also discovered that the certain types of symptoms of Long COVID are consistent among patients regardless of which SARS-CoV-2 variant caused their initial infection. Yet, people infected with the earlier variants have a higher number of symptoms than those infected with more recent variants.
Patient experiences have guided and will continue to guide the study designs and trajectory of RECOVER. Now, fueled by the knowledge that we have gained, RECOVER is preparing to advance to the next phase of discovery—testing interventions in clinical trials to see if they can help people with Long COVID.
To prepare, we are beginning to identify potential clinical trial sites. This important step will help us to find the right places with the right staff and capabilities for enrolling the appropriate patient populations needed to implement the studies. We’ll ensure that the public knows when these upcoming clinical trials are ready to enroll.
Of course, the design of these RECOVER clinical trials will be critical, and insights gained from patients have been key in this process. Results from RECOVER study questionnaires, surveys, and discussions with people experiencing Long COVID identified symptom clusters considered to be the most significant and burdensome to patients. These include sleep disorders, “brain fog” (trouble thinking clearly), exercise intolerance and fatigue, and nervous system dysfunction affecting people’s ability to regulate normal body functions like heart rate and body temperature.
These patient observations have effectively guided the design of the clinical trials that will evaluate whether certain interventions and therapies can help alleviate symptoms that are part of these specific clusters. We’re excited to be advancing toward this phase of the initiative and, again, are very grateful to patient representatives like Nitza, quoted above, for getting us to this phase.
Effective evaluation of those treatments will be important, too. Early in the pandemic, while many clinical trials were launching, most were not large enough or did not have the appropriate objectives to define effective treatments for acute COVID-19. This left clinicians with few clear options when faced with patients needing help.
Learning from this experience, the RECOVER trials will be harmonized to ensure coordinated and efficient evaluation of interventions—in other words, all potential therapies will be using the same protocols platforms and the same data elements. This consistency accelerates our understanding and strengthens the certainty of findings.
Given the widespread and diverse impact that the virus has on the body, it is highly likely that more than one treatment will be needed for each kind of patient experience. Finding solutions for everyone—people of all races, ethnicities, genders, ages, and geographic locations—is paramount.
RECOVER patient representative, Juan Lewis, of San Antonio shared with us, “In April 2020, I was fighting for my life, and today I fight for my quality of life. COVID impacted me physically, mentally, socially, and financially.”
For people like Juan who are experiencing debilitating Long COVID symptoms, we know that finding answers as quickly as possible is critical. As we look ahead to the next 12 months, we’ll continue the studies evaluating the underlying causes, risk factors, and outcomes of Long Covid, and we anticipate significant scientific progress on research leading to Long COVID treatments.
Keep an eye on the RECOVER website for updates on our progress, and published findings.
References:
[1] Identifying environmental risk factors for post-acute sequelae of SARS-CoV-2 infection: An EHR-based cohort study from the recover program. Zhang Y, Hu H, Fokaidis V, V CL, Xu J, Zang C, Xu Z, Wang F, Koropsak M, Bian J, Hall J, Rothman RL, Shenkman EA, Wei WQ, Weiner MG, Carton TW, Kaushal R. Environ Adv. 2023 Apr;11:100352.
[2] Identifying who has long COVID in the USA: a machine learning approach using N3C data. Pfaff ER, Girvin AT, Bennett TD, Bhatia A, Brooks IM, Deer RR, Dekermanjian JP, Jolley SE, Kahn MG, Kostka K, McMurry JA, Moffitt R, Walden A, Chute CG, Haendel MA; N3C Consortium. Lancet Digit Health. 2022 Jul;4(7):e532-e541.
Links:
RECOVER: Researching COVID to Enhance Recovery
Long COVID: Ask NIH Leader about Latest Research (YouTube)
NIH Builds Large Nationwide Study Population of Tens of Thousands to Support Research on Long-Term Effects of COVID-19, NIH News Release, September 15, 2021
Understanding Long-Term COVID-19 Symptoms and Enhancing Recovery, NIH Director’s Blog, October 4, 2022.
NIH RECOVER Research Identifies Potential Long COVID Disparities. NIH News Release, February 16, 2023.
NIH RECOVER Listening Session, June 2021 (NIH Videocast)
NIH RECOVER Listening Session: Understanding Long COVID Across Communities of Color and Those Hardest Hit by COVID, January 21, 2022 (NIH Videocast)
Note: Dr. Lawrence Tabak, who performs the duties of the NIH Director, has asked the heads of NIH’s Institutes, Centers, and Offices to contribute occasional guest posts to the blog to highlight some of the interesting science that they support and conduct. This is the 25th in the series of NIH guest posts that will run until a new permanent NIH director is in place.
Thanks for the info on Long-Covid; which I was diagnosed in February 2022. The day I lost my life… I had to quit my job & went thru alot of Doctors’ appointments; which I have gave up because so many naive Doctors have no clue about Long-Covid! And are so unsympathetic. I have kept a daily dairy of my symptoms; which I have had close to 50. So many that keep me from living my daily life normally. I cannot plan my days, because I don’t know how I will feel from Day to Day. Or Hour to Hour. I had to take early retirement on Social Security, because Disability doesn’t pay as much & takes so long to get on. I am struggling trying to pay my monthly bills on SSI. So stressful, besides my physical health which has deteriated so much in the last year. All the Pandemic help we were getting is stopping because the President says the Pandemic is over? What about the Pandemic of Long-Covid?? Who’s going to help us before we become Homeless? 3 years & no cure either? Please somebody has to help us Physical & Financial. I am so Sick of being Sick!! just want my life back!
Omg, you are speaking my words. The only thing I’ve gotten for my Long COVID is a referral for a Mental Health Evaluation. I’ve been on the waiting list for 9 months, so whatever good that is. I was put on blood pressure meds, which I’m pretty certain has caused some of the other issues I’ve been having, I’ve had three different SSRI’s prescribed to me, after telling them that I can’t emotionally & mentally handle being anyone’s guinnea pig. Especially considering the mental health evaluation seems so important to them, but not important enough to need before giving out anti depressants & nerve pills. I stressed to them that I’m about to lose my home, my job shut down PERMANENTLY, i have no income. My boss, who I contracted COVID from, was hospitalized for 3 weeks & never re-opened. I hear employers say that no one wants to work……..well, 43+ applications with a great resume, and I’ve had one interview & three call backs. The best the doctor could do was tell me that she’d let me know if she heard any new research about Long COVID & how to treat it.
I’m sorry, you’ve had to struggle so much as well. But I’m glad you shared your story bc I feel like I’m losing my mind sometimes. I wish you the best.
I felt exactly the same way for 2 years. I started taking FISETIN 500 mg a day and doing some push ups every 2nd day after 2 months a feel 90% better. I have my strength back my brain is back my life is back! Don’t give up
I have treated 15 or more Long Covid patients with acupuncture; and written an article on the effectiveness of 5 Element acupuncture with Long Covid. Why? Because its assessment is not protocol treatment but to see each person’s symptoms as unique to them and to find the root cause for that person. Here is the abstract of the article: “The long-tail symptoms of Covid involve multiple organs and physiological systems. Western medicine is struggling to understand this sequela, its disruption to full recovery and how best to treat it.
Worsley 5 Element Acupuncture, with its assessment focus on finding the root cause of illness, namely the
causative factor, may offer a lens through which any acupuncture health care provider can understand the longtail symptoms for any one patient and target their treatment. Case reports suggest the sequelae of symptoms that persist is linked to your causative factor. Treatment results point to 5 Element Acupuncture as an effective assessment and treatment intervention in long-Covid recovery.” I am currently writing another case study for a patient who has been seen at the Children’s Heart Institute in Herndon VA. She went from flunking the tilt table test to passing with flying colors after 6 months of treatment. if you are considering the study of acupuncture as an intervention I would be honored to speak with you about my clinical experience and guidance in designing a research study of its potential for healing Long Covid patients..
I am extremely frustrated that none of the fine medical institutions in Jacksonville, FL, have chosen to be a part of the Recover Studies, as far as I have been told. I am not sure why that is, and I have encouraged their participation, and would personally like to be a part of the study. Is it possible for someone to participate who does not live in the area where your participating institutions are?
I am 84 years old. I contacted Covid in February of 2020 but never developed a temperature. May27 2021 I received the first Moderna shot and for months experienced severe joint attacks. I developed long covid and have since experienced shortness of breath and extreme fatigue. It damaged my lungs and have had extensive tests and was diagnosed with Emphasima although I have never smoked or been around secondary smoke.
I’m going on 18 months with no taste and smell from Covid and that was when two vaccines were available. I’m now into five vaccines, numerous doctor appointments, a MRI of my brain, and just about anything that came down the pike to try. Right now I’m trying B3 sublingual. Please give me some hope as to when or how I can get my taste and smell back. Thank you.
I can’t believe how little importance it seems people have put on the loss of taste & smell with long COVID. I caught it the end of July/first of August 2021, Delta Variant. I didn’t realize it would have this much effect on me. I’ve been struggling to put on & keep the weight that I’ve lost. Okay, I’m done rambling for now. I wish you all the best!!
I went through your blog, it is quite informative, would really like to see more such blogs with amazing content and information. Keep sharing more such blogs.
I hope to be selected for this next stage of the clinical trials. I will trial anything at this point , I am so sick! Thanks for all your doing to help us.
Just about every update from RECOVER has amounted to little more than a vague promise to provide some information useful to someone at some indeterminate future point. There have been multiple news items saying that there will be trials for therapeutics someday, with very few specifics. The R3 seminar that was supposed to provide an early look at the prospective studies — by far the most potentially informative of the current projects — has been canceled twice without explanation, and not rescheduled. Disappointment after disappointment.
I desperately want RECOVER to succeed in its mission. I would like to be able to advocate for it, above all in pushing Congress to continue funding the initiative. Unfortunately, I see precious little evidence that the sums invested already have been well spent. I hope that I start to see some soon.
I’ve tried multiple times to get into the RECOVER program and for many months was desperate to get help. I live in a rural area, but we have a good region hospital and a fair amount of specialists. I got a mild case of covid in January of 2022. One bad day in bed and about 5 days of mild symptoms. But I developed crippling joint and muscle pain, which progressively got worse over the next few weeks. At three weeks, I started having trouble breathing and then, at night, a constant cough. When I started feeling like I was suffocating, I went to the doctor. Fortunately, their xray was broken. An ultrasound showed my lungs were full of blood clots, with the right bronchus 75% blocked. My major complaints were the debilitating fatigue, body pains, blood clots, along with brain fog, vertigo, and migraine headaches. My general practitioner paid attention and treated the symptoms. She referred me to a cardiologist, pulmonologist, lung therapy and gastroenterologist. The last insult was developing diabetes. My doctors still can not explain any of it. But they stuck with me. I could see their frustrations, plus some eye rolling when hearing the vague symptoms I had a hard time describing. I’ve dealt with an autoimmune disease for 40 years and so many of the symptoms seem like an autoimmune response. Especially the waves of feeling like I am getting better and then crashing for days. I believe my last two vaccines helped, along with the biologics I take for my autoimmune disease. My biggest mistake was thinking I was not sick enough to get antibody or antiviral treatment, at the beginning, when I got my positive test back. Just read that metformin is showing promise in treatment and prevention of Long Covid.
27 months ago, I got a severe case of Covid….. I have suffered from Long Covid ever since. I have lost my health, my job, my career, my personality, my friends, my financial future and so much more. Please raise the profile of Long Covid in order that people with Long Covid can have some hope of recovery from research. I have tried multiple experimental treatments and I appreciate the fact that my doctors have tried, but nothing has changed my condition. My life is forever changed. I have been destroyed.
This can’t move fast enough. I have been suffering for 2-1/2 years so far and don’t see an end in sight. I was hoping to participate in a recover study to help as much as I can, but unfortunately there are non in the Milwaukee area. Please don’t give up and keep this initiative moving as quickly as possible.