By David Tuller, DrPH
The US government seems to be taking Long COVID seriously. In December, Congress allocated $1.15 billion over four years for research into the issue. This week, Francis Collins, director of the National Institutes of Health, announced the agency’s plans for that funding. (I’ve posted his announcement in full below.) In a post last month he highlighted the plight of the long-haulers and praised the most extensive report yet on their situation. That well-received research report was spearheaded and produced by a patient-led team from the Body Politic COVID-19 Support Group, an online community.
The relationship between what is generally being called ME/CFS and what is generally being called Long COVID is unclear. A number of high-profile news articles–including ones published by The New York Times, The Guardian, and Kaiser Health News–have noted the apparent overlaps in symptoms and in possible or hypothesized causes. These articles have taken at face value the notion that ME/CFS patients are suffering from a serious disease and have not presumed that psychotherapy and exercise are the optimal approaches to treatment.
Both ME/CFS and long COVID are complex phenomena–as is evident from confusion and disagreement over the appropriate nomenclature. ME/CFS is an unsatisfactory hybrid term used to refer to a range of described clinical entities. Long COVID is a convenient and easy-to-understand term but it conveys nothing about the condition’s expansive range of presentations. That variety is better expressed through the scientific name it has been given: Post-Acute Sequelae of SARS-CoV-2 infection (PASC). In other words, there are lots of different sequelae–not just one entity called Long COVID.
Ramped up funding for research into Long COVID could be beneficial for ME/CFS patients. My sense is that many of the latter are hopeful that these investigations could reveal biological mechanisms and pharmaceutical treatments that could be relevent for them as well–especially given apparent similarities in symptoms like post-exertional malaise and cognitive impairment. (I never expected to see the phrase “brain fog” in news headlines all around the world.)
At the same time, there is cause to be wary. This pandemic is now early in its second year, so so-called Long COVID is still a relatively short phenomenon–especially when compared to the decades of illness experienced by many with ME/CFS. Reports of persistent symptoms are known to be common after many viral infections. It is also known that these cases self-resolve most of the time–even if it can take a year or more in some cases.
If it is asserted prematurely or simplistically that Long COVID and ME/CFS are somehow the same, what happens if most of these legions of Long COVID patients get better in the next few months or over the next year? It could easily be presumed that the “multi-disciplinary rehabilitation”–or any number of helpful or non-helpful interventions–led to improvements, even if the recoveries would have happened in any event. In such a scenario, that advice could be presumed to be applicable to ME/CFS patients. Before declarative statements can be made, we need to see a lot more data.
In the meantime, it’s great that NIH has found more than $1 billion to investigate Long COVID. It certainly suggests that more money could have been found ten or twenty years ago to study ME/CFS than the pittance that has historically been allocated. While the amount has increased significantly in recent years, two or three times a pittance is still a relative pittance. (Jennie Spotila provides regular analyses of NIH funding at Occupy M.E., her blog)
Below is the announcement from NIH Director Francis Collins:
NIH launches new initiative to study “Long COVID”
I write to announce a major new NIH initiative to identify the causes and ultimately the means of prevention and treatment of individuals who have been sickened by COVID-19, but don’t recover fully over a period of a few weeks. Large numbers of patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms long past the time that they’ve recovered from the initial stages of COVID-19 illness. Often referred to as “Long COVID”, these symptoms, which can include fatigue, shortness of breath, “brain fog”, sleep disorders, fevers, gastrointestinal symptoms, anxiety, and depression, can persist for months and can range from mild to incapacitating. In some cases, new symptoms arise well after the time of infection or evolve over time. In December, NIH held a workshop to summarize what is known about these patients who do not fully recover and identify key gaps in our knowledge about the effects of COVID-19 after the initial stages of infection. In January, I shared the results from the largest global study of these emerging symptoms. While still being defined, these effects can be collectively referred to as Post-Acute Sequelae of SARS-CoV-2 infection (PASC). We do not know yet the magnitude of the problem, but given the number of individuals of all ages who have been or will be infected with SARS-CoV-2, the coronavirus that causes COVID-19, the public health impact could be profound.
In December, Congress provided $1.15 billion in funding over four years for NIH to support research into the prolonged health consequences of SARS-CoV-2 infection. A diverse team of experts from across the agency has worked diligently over the past few weeks to identify the most pressing research questions and the areas of greatest opportunity to address this emerging public health priority. Today we issued the first in a series of Research Opportunity Announcements (ROAs) for the newly formed NIH PASC Initiative. Through this initiative, we aim to learn more about how SARS-CoV-2 may lead to such widespread and lasting symptoms, and to develop ways to treat or prevent these conditions. We believe that the insight we gain from this research will also enhance our knowledge of the basic biology of how humans recover from infection, and improve our understanding of other chronic post-viral syndromes and autoimmune diseases, as well as other diseases with similar symptoms.
Some of the initial underlying questions that this initiative hopes to answer are:
- What does the spectrum of recovery from SARS-CoV-2 infection look like across the population?
- How many people continue to have symptoms of COVID-19, or even develop new symptoms, after acute SARS-CoV-2 infection?
- What is the underlying biological cause of these prolonged symptoms?
- What makes some people vulnerable to this but not others?
- Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such as chronic heart or brain disorders?
These initial research opportunities will support a combination of ongoing and new research studies and the creation of core resources. We anticipate subsequent calls for other kinds of research, in particular opportunities focused on clinical trials to test strategies for treating long-term symptoms and promoting recovery from infection.
Research Studies: A SARS-CoV-2 Recovery Cohort—the central program of this initiative—will leverage ongoing COVID-19 studies, long-term cohort studies established well before the pandemic began, and new studies of people with Long COVID. These studies aim to characterize the long-term effects of infection in a diverse set of people and the trajectory of symptoms over time. The initiative will support a multidisciplinary consortium of investigators who collaborate and coordinate across studies. The initiative also will support two complementary studies: 1) large data studies from resources such as electronic health records and health systems databases that will be critical to understand how many people are affected and what factors contribute to recovery; 2) studies of biological specimens to understand injury to the brain and other organs.
Core Resources: A clinical science core, data resource core, and biorepository core will provide overall consortium coordination, clinical expertise in post-acute COVID symptoms, and facilitate the use of standardized data and biological specimens collected from the consortium studies by consented volunteers.
Our hearts go out to individuals and families who have not only gone through the difficult experience of acute COVID-19, but now find themselves still struggling with lingering and debilitating symptoms. Throughout this pandemic, we have witnessed the resilience of our patient, medical, and scientific communities as they have come together in extraordinary ways. NIH deeply appreciates the contributions of patients who have not fully recovered from SARS-CoV-2 infection and who have offered their experiences and insights to lead us to this point, including those with other post-viral infections. Through the PASC Initiative, we now ask the patient, medical, and scientific communities to come together to help us understand the long-term effects of SARS-CoV-2 infection, and how we may be able to prevent and treat these effects moving forward.
Francis S. Collins, M.D., Ph.D.
Director, National Institutes of Health
11 responses to “National Institutes of Health Director Francis Collins on Plans for Long COVID Research”
Thank you, David! Another timely and informative post!
As you know there seems to be cluster of conditions a combination of which often occur together, ME, FM, Orthostatic Intolerance (eg POTS), EDS, MCAS etc.
I spoke to a doctor at a London hospital earlier this week regarding what are possibly Mast Cell issues. He said that they are already seeing 100’s of Long Covid patients with my particular presentation of mast cell problems. This is helping to refine treatments.
Although we are hopefully getting past the acute phase of health care being overwhelmed by Covid, in the longer term it looks like Long Covid is going to have a significant impact on a range of specialties, for years.
It seems to me that several decades ago, somewhere high up in the upper echelons of medicine, a political decision must have been made that lots of money could be saved by our healthcare systems if doctors no longer believed patients’ accounts of their problems – if the lived experience of those patients no longer counted for anything and instead they were all treated with scepticism and suspicion from the moment they walked into a doctor’s consulting room or Emergency department. All that had to be done was to fill doctors’ heads with stories of mad, somatising, even hysterical patients who stress their doctors out and make their stomachs churn. Patients who are prone to turning really nasty if something doesn’t quite go their way. Malingering, malicious, deceitful, good-for-nothing people, quite often middle-aged witchy women (warts not essential), who don’t deserve attention or healthcare resources being spent on them. Flawed, feckless characters who deny their own psychiatric/psychological problems because they stigmatize and deride those who suffer with mental ill-health. The dregs.
But then along came Covid-19, and now it appears that some of our heroic frontline doctors are discovering that their lived long-covid experience (and experience as heroic doctors) actually counts for nothing. A new wave of idle layabouts who don’t want to think positively or exercise their way out of their predicament. The dregs of doctoring – doctors without a backbone.
Let’s hope that their mistreatment is an eyeopener to what’s been going on all this time. Let’s hope that something’s now done to reverse this high-risk strategy before it completely destroys all faith in medicine. Let’s hope that the NIH’s funding of research into long-covid marks the start of that reversal and that all patients with hard-to-explain symptoms are finally listened to and believed.
hi David I’ve tried emailing you but it gets rejected.
which is listed on your university website
what is your email address please?
sorry is it David?
I suffer with fibromyalgia reading the list of symptoms of long Covid they are exactly the same ??!! . Let’s hope they develope medication to help all :(((
Opportunistic PR is selling the wrong message to the detriment of those who have been suffering under the classification of PVFS for decades. ME is not a stew pot that can only taste better if more ingredients are added.
Thank you, David, for this post. Don’t you think ME/CFS patients would be better served, though, by *all* of us (the Long Haulers plus us) lumped together under a heading of post-acute sequelae of (insert virus or bacteria here) infection when actually so many of us had a viral onset (just not from Covid-19, but some from SARS and MERS certainly)? I personally don’t see the immediate scientific naming of PASC and it’s separation from ME/CFS as something that will be positive for ME/CFS patients in the long run, and would much rather see a PEM/POTS disease with a completely new name used to encompass all patients with PEM/POTS who meet several other overlapping criteria, and who got sick after an acute infection. This immediate funding for PASC, and the Long Covid clinics springing up around the country (when the one local ME doc where I lived dumped me in the pandemic because I’m too severe of an ME/CFS patient) is just such insult to injury for those of us who have suffered for decades.
A disease named ME/CFS doesn’t exist, so there is no reason to worry about this.
Instead, worry about the still ongoing epidemic of HFMD, polio, AFP and ME in Southeast Asia.
It’s time for both Collins and Fauci need to resign. NIH has choked any meaningful virology research. In an attempt to protect MMR vaccine makers, these men made true basic research in virology a career ender. New thinking, centered on the viral or phage or both cause of brain cell damage. The brain cell damage can be measured objectively. The treatment is two fold: (1) element the pathogens that cause the damage (2) find a way to repair the damage. There are scientists out there who can help, like Texas A&M’s Ryland Young and the US Navy’s Theron Hamilton on phages and the much maligned Judy Mikovits and Frank Ruscetti on viruses and virons.
Thank You David. ME has been defined decades ago. Then came CFS at Incline Village Outbreak, where CDC did a horrible job covering the outbreak. I agree that “ME/CFS is an unsatisfactory hybrid term used to refer to a range of described clinical entities.”
There seams to be an overlap of symptoms, but long-covid is very new. My guess is that many with long-covid will get back to 70-90% of their previous self. That will enable them to go back to work, and considered cured. They will go through CBT & GET along with other therapies base on each ones individual condition. Many suffered organ damage to the lungs, heart, kidney, and brain due to cytokine storm or blood coagulation.
Medical researchers have the advantage of knowing which virus causes COVID-19 and long-covid. It enabled Pfizer and Moderna to develope a mRNA vaccine in record time. Which is another unknown. Not sure if mRNA prevents transmission or prevents one from acquiring COVID19. It may also cause additional health issues later on. The mRNA vaccine is one big experiment. Which is another unknown.
The 1.15 billion directed towards long-covid will increase the understanding of long term effects of coronaviruses. ME was seen to occur during poliomyelitis outbreaks, an enterovirus. Coxsackie enteroviruses were also often detected. CFS had seen the reactivation of HHV-6 and possibly retroviruses. Since each is caused by different viruses and each virus probably effects the health of a person differently, I feel that they should be treated as similar but very different.