New website receives mixed reviews from Long COVID advocates and researchers; some do not expect to see any meaningful support from the Trump administration.
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Key points you should know:
- Earlier this month, the Department of Health and Human Services (HHS) published a new website about Long COVID. It describes the disease as an “invisible illness,” features some statistics and references to related diseases, and promises new resources.
- The new website is HHS’s biggest public action on Long COVID since an event in September 2025, at which Health Secretary Robert F. Kennedy Jr. and other top federal officials made big promises about supporting people with the disease.
- This site, along with a similar site on Lyme disease, promises an upcoming “tech sprint” competition to develop new tools for infection-associated chronic conditions, a clinician locator, and other resources.
- The HHS and other agencies are working behind the scenes to develop further Long COVID programs, but progress is slow. The Trump administration also shut down a former Office of Long COVID Research and Practice, advisory committee, and other efforts started under Biden.
- Some Long COVID advocates remain skeptical of Kennedy’s HHS, saying they do not expect “help or progress in this administration.”
Six months since the federal Department of Health and Human Services (HHS) hosted a high-profile Long COVID event, the agency’s only public action tackling the disease is a new website, published earlier this month. While most of the site shares basic information about Long COVID, it also hints at other upcoming government efforts — first announced with a similar website and roundtable event for Lyme disease in December — including a “tech sprint” to develop new technologies and resources for people with the disease.
Behind the scenes, federal health officials have been consulting with leading Long COVID researchers and advocates to plan new programs, according to people involved in those conversations who spoke to The Sick Times. However, progress has not been speedy or transparent, with government shutdowns and staffing changes at federal agencies adding hurdles.
At the September roundtable event, Health Secretary Robert F. Kennedy Jr. and other top health officials made big promises to the Long COVID community. They pledged to support research and healthcare, including creating a new “Long COVID consortium,” speeding up clinical trials, facilitating more action from pharmaceutical companies, and raising awareness.
Months later, some Long COVID community members are disappointed that the new website is the only public progress. Others think it’s a promising start. Still others are not interested in any support from the Trump administration, citing the damage it has done for other health issues and people with disabilities, as well as its leadership by figures who have peddled COVID-19 misinformation.
Despite its stated commitments to Long COVID, Trump’s HHS closed the Office of Long COVID Research and Practice (OLC), established under the Biden administration. It also canceled a federal advisory committee on Long COVID before members had the chance to start meeting. The HHS has additionally canceled and threatened research funding for COVID-19, Long COVID, and myalgic encephalomyelitis (ME), while Republicans in Congress have taken Trump’s lead in drastically cutting Medicaid funding and threatening other health and disability programs.
Devin Russell, executive director of the Long COVID Foundation, said he and his colleagues have had “several discussions” with HHS staff since the roundtable event in September, at which he was a panelist. “But obviously we need some more progress,” he told The Sick Times.
The fall event also featured the Advanced Research Projects Agency for Health (ARPA-H), a newer agency set up to tackle high-risk, high-reward research; some Long COVID scientists and advocates see it as an ideal home for programs on this disease. Jason Roos, then ARPA-H’s acting director, said the agency would “come up with a plan” to advance Long COVID research on the order of weeks, not months or years.
But six months later, ARPA-H has no updates to share yet, a representative from the agency’s press office told The Sick Times. The agency now has a new director, and Roos is no longer on staff there as of February. The HHS press office did not respond to a request for comment.
RECOVER, the flagship Long COVID research program at the National Institutes of Health (NIH), also continues to advance slowly. New trials from RECOVER-Treating Long COVID are set to start this summer — nearly two years after that initiative launched with promises of urgency — while researchers are releasing some results from the first round of trials, begun in 2023.
“I can’t make any predictions,” said David Putrino, director of the Cohen Center for Recovery from Complex Chronic Illness (CoRE) at Mount Sinai, who has also had conversations with federal officials since speaking at the September event. “In general, all I can say is that there’s been more engagement than the previous administration with us specifically [at CoRE]. And we’re hopeful that that’s going to lead to positive change.”
Jason Roos, then ARPA-H’s acting director, said the agency would “come up with a plan” to advance Long COVID research on the order of weeks, not months or years. But six months later, ARPA-H has no updates to share yet, a representative from the agency’s press office told The Sick Times.
New website describes Long COVID as an “invisible illness”
The HHS’s new website features a short description of Long COVID, statistics, and links out to other government programs and resources. It describes the disease as an “invisible illness” and a “multisystem chronic disease” that “can affect multiple body systems and significantly disrupt daily life.”
The page also notes that Long COVID falls into the category of infection-associated chronic conditions and illnesses (IACCIs, often also called IACCs), including myalgic encephalomyelitis (ME) and Lyme disease; it states there is overlap in symptoms among these diseases but potential differences in underlying mechanisms. “HHS is advancing a disease-agnostic approach to strengthen data systems, clinical networks, and research infrastructure for invisible illnesses, accelerating measurable progress while preserving the distinctiveness and urgency of Long COVID,” the page states.
Much of the page overlaps with a similar HHS website on Lyme disease, including its format, references to IACCIs, upcoming resources, and many of the links. HHS posted the Lyme site in December, when the agency hosted a similar roundtable event about that disease.
The Long COVID page “seems like not a whole lot of substance,” said Ziyad Al-Aly, clinical epidemiologist at Washington University in St. Louis. Al-Aly was also a panelist at the September event, but has not heard further updates from the HHS despite reaching out multiple times, he told The Sick Times. “There was no announcement of a new program or new funding, or a new initiative to actually really help patients.”
According to the page, Long COVID impacts about 5–7% of U.S. adults or about 18 million people, a statistic drawn from surveys done by the Centers for Disease Control and Prevention (CDC). Notably, the Census and CDC’s Household Pulse Survey — which was a preferred reference for many advocates because of its frequent updates, detailed demographic data, and questions codesigned by the Patient-Led Research Collaborative — is no longer surveying respondents about Long COVID as of early 2025.
A relatively new CDC page titled “Tracking Long COVID” claims that new Long COVID prevalence data will be available “by June 30 and December 31, 2026.” While the page does not specify, it’s likely these new data will be from the National Health Interview Survey or Behavioral Risk Factor Surveillance System, both of which report with significant lag time compared to the Household Pulse Survey.
There was no announcement of a new program or new funding, or a new initiative to actually really help patients.
Ziyad Al-Aly, Washington University in St. Louis and panelist at the september event
Russell said he has suggested that the HHS add “the estimated number of children that have Long COVID” to the page. And they should “put the dates of those statistics [currently on the page] because those are old statistics now,” he added.
“I wish HHS had included the fact that Long COVID is a patient-created, colloquial term originally inclusive of any new or worsening health issues that persist beyond the acute phase of infection,” and including people who have a wide variety of new diagnoses after infection as well as “lingering and often nonspecific symptoms which doctors aren’t able to diagnose within the existing framework,” said advocate Froglet Taylor in a written message.
Still, Taylor thinks the page is effective in emphasizing both that Long COVID and other IACCs are “distinct illnesses,” while also noting that research should not be siloed.
Some community members have questioned a section of the site titled “gold-standard science for Long COVID,” which does not actually recommend specific studies or scientific protocols. It links out to the home page of ClinicalTrials.gov as well as CURE-ID, a project by the Food and Drug Administration and NIH collecting case reports of how people with Long COVID and other chronic illnesses respond to different treatments. The same CURE-ID reference was added to HHS’s Lyme page, though that site was posted before the project actually started collecting Lyme reports.
“The red flags were there for me when I saw that section,” wrote Anisia Corona, founder of DxTx, which offers education for healthcare providers treating complex chronic conditions. “The reality is: the community has already built tools that are more useful, more navigable, and more relevant than what’s currently being promoted,” she said, pointing to the CrunchME database, Long COVID Studies site, and The Frontlines, DxTx’s magazine for healthcare providers, as examples.
“What we need is for HHS and programs like this tech sprint to partner with what already exists, and help amplify it, not reinvent the wheel with resources that don’t reflect how patients actually search for help,” she said.
The term “gold-standard science” has become a Trump administration buzzword, psychologist and public health researcher Jonathan P. Scaccia wrote in a recent op-ed in Undark. This term’s use “may be to reassure the public, but the framing is misleading,” he argued, as researchers have historically used the term in very specific contexts.
While the website has some accurate information about Long COVID, it fails to explore the disease’s underlying biological causes or cite specific research, said Long COVID advocate and former federal employee Amanda Finley. “By the end of the page, I had a better understanding of Lyme disease but not Long COVID.” She added: “Knowing some of the people brought into this administration to work on this issue, I don’t have any faith that we aren’t just sinking tax dollars into predatory practices.”
HHS claims further resources, “sprint” are “coming soon”
While most of the new HHS website does not share new information, some sections hint at upcoming programs to address Long COVID and other IACCs.
The site links out to a page called “Living Clinical Guidelines for IACCIs,” which currently features CoRE’s IACI Provider Manual — a comprehensive document for clinicians working with people who have these complex chronic illnesses released in August 2025.
At the roundtable event, one of Secretary Kennedy’s “concrete promises” was that HHS would “stand up a website and try and put as many resources on that website as possible,” Putrino said. He mentioned the manual at the event, and quickly heard from HHS that they wanted to help share it.
Given the fast pace of Long COVID research, it’s important for documents like CoRE’s manual to be frequently updated, Putrino said. The “living evidence” model he describes is different from current practices in continuing medical education, in which courses and materials have strict standards for what types of findings can be included, he said.
“We’re actually going through just some design steps now on the next version, so that we can release 2.0 of the manual with some of the things that we’ve learned in the last six months,” Putrino said. He estimates that the next version may be available in one to three months.
The HHS website also promises to feature other resources for people with Long COVID, including a “clinician locator” tool with information on physicians treating IACCs. It’s currently unclear how the agency is soliciting such information or how community members may contribute suggestions; the HHS press office did not respond to The Sick Times’ questions about this.
Taylor would like to see the locator tool “include information on the infection control practices used in their practice, average appointment lead times, and the specific IACCIs or related issues they focus on treating,” they said. In addition, the HHS should add more connections to support programs, such as disability benefits, housing assistance, and prescription drug assistance programs, they added.
Another upcoming program previewed on both the HHS’s Long COVID and Lyme sites is a “Tech Sprint for AI and Invisible Illness,” building on a prior program for Lyme disease called LymeX, which hosted a competition for new Lyme disease diagnostics. HHS describes the new program as a “national challenge with a total prize pool of $200,000 to support innovative uses of HHS Open Data to better understand, validate, and inform action for complex chronic disease.” According to the page, it will include three tracks: Lyme and tickborne diseases, “invisible illness” or IACCs, and quantifying the cost of complex chronic illnesses.
“If they do a COVIDX, like LymeX, that could be something that could spur innovation, potentially,” Russell said. He was previously familiar with the LymeX program as he has been affected by chronic Lyme, and thought it helped advance research. “But people with chronic Lyme still have plenty of struggles, so it’s not like it’s totally solved the problem either,” he added.
Some entrepreneurs in the IACC space have expressed interest in participating in the new “tech sprint” but are not sure how to sign up, according to those who spoke to The Sick Times. Both the Long COVID and Lyme HHS sites state that the challenge will run for twelve weeks starting in “early 2026”; it’s already three months into the year.
One element Corona would like to see in the HHS’s program is mentorship from other researchers and entrepreneurs who actually understand Long COVID and IACCs. This work “is time-consuming, emotionally draining, clinically complicated” and not supported by many institutions, she said. “Without meaningful change, the very people who built this ecosystem are burning out.”
This work “is time-consuming, emotionally draining, clinically complicated” and not supported by many institutions, she said. “Without meaningful change, the very people who built this ecosystem are burning out.”
Anisia Corona, founder of DxTx
Staff turnover hinders progress, outside advocates remain skeptical
Soon after the September event, HHS and other federal agencies faced furloughs and unprecedented layoffs during the fall government shutdown. In the months since, staffing changes have continued. Multiple researchers and advocates said they have had a hard time knowing whom to contact for updates and continued conversations.
For example, Hossein Estiri, a clinical informaticist at Harvard Medical School and Massachusetts General Hospital, has been working on a proposal for ARPA-H that emerged from discussion he had at the roundtable event, he told The Sick Times. The idea is to use real-world data to simulate clinical trials repurposing drugs for other conditions or replicating existing studies; the data studies are faster and easier than actual trials, and “the answers are going to be very similar,” he said.
After the roundtable, he was connected with a few people at ARPA-H, he said, and developed the idea into a thorough proposal. But feedback has been slow, and as of late March, he was unsure of the proposal’s current status.
“I remain hopeful,” Estiri said. “The good thing is that HHS at least launched that website, so maybe there is movement happening.”
ARPA-H has a new director, Alicia Jackson, as of late 2025. New leadership at agencies can often lead to staffing shake-ups and new project assignments.
HHS did have officials who were well-versed in these diseases when the second Trump administration started: staff at the OLC. This office was doing some similar work to what different HHS and ARPA-H staffers are now, including speaking to advocates, compiling resources, and coordinating across different federal agencies.
When the Trump administration closed that office in March, all of the progress it had made on similar initiatives to those the HHS is now promising was “upended,” said a source familiar with the office’s work, who asked to remain anonymous. Current efforts now are “reinventing the wheel” rather than building on prior progress,” they added.
Staffing shakeups have also impacted NIH RECOVER: last year, Secretary Kennedy fired Jeanne Marrazzo, then-director of the National Institute of Allergy and Infectious Diseases, after she filed a whistleblower complaint. Marrazzo had been a leading official at RECOVER-TLC. John Beigel, another NIAID official who had been involved with RECOVER-TLC, resigned in December.
“There was a restructuring that happened in HHS, and I think they kind of have their bearings now,” Russell said. “So let’s see what happens in the next couple of months. And if [progress is still limited], then everybody might have to make some more noise.”
However, other advocates are already making noise — saying they don’t trust anything out of this administration. “Please remain skeptical,” wrote science communicator and public health advocate Lucky Tran in a social media post about the new Long COVID site. “They will offer more junk science than real solutions, and use this as another opportunity to spread misinformation about vaccines.”
Finley, who has hosted virtual “No Kings” events rallying against the Trump administration, is similarly skeptical that the HHS will do more to support people with Long COVID. The site is “a shiny bauble to distract us from the hard fact that we will not see help or progress in this administration,” she said. “They have yet to prove otherwise.”
[The site is] a shiny bauble to distract us from the hard fact that we will not see help or progress in this administration. They have yet to prove otherwise.
Amanda Finley, Long COVID advocate and “No Kings” organizer
Send us tips for further coverage of HHS actions on Long COVID and IACCs at editors@thesicktimes.org, or reach out to Betsy on Signal @betsyladyzhets.25 or Miles at @milesgriffis.31.
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