There’s nothing like a crisis to expose fundamental weaknesses. As Warren Buffet likes to say, “It’s only when the tide goes out that you know who’s been swimming naked.” The coronavirus and long-COVID pandemic has exposed a lot of bare bodies.
The Centers for Disease Control’s (CDC) failure to quickly produce testing kits for the SARS-CoV-2 coronavirus, and its willingness to let itself be punted around like a political football during the pandemic, left the agency’s reputation in tatters.
Now we learn that it’s not up to the task with long COVID either. The CDC’s main job is to monitor and improve the health of the country. It was founded in 1946 to monitor the spread of an infectious disease – malaria. One might think that its long-term focus on infectious diseases might give it a leg up, or at least more of an interest in post-infectious diseases like long COVID, but no.
Solve M.E. recently reported that much like the NIH – which failed to move fast enough to catch long COVID in the act – the CDC is going to miss the ball on long COVID. In fact, it’s not even going to take a swing at long-COVID data for a couple of years.
In “Official U.S. Long Covid-19 Data Two Years Away, Hurts Research“, Bloomberg Law reported that after Reps. Don Beyer (D-Va.) and Ayanna Pressley (D-Mass.) asked the CDC to provide demographic data on what people with long COVID look like, the CDC replied that it would not have that data for two years – or about four years after it became apparent that long COVID was a real thing. So much for keeping track of “emerging health threats”.
Since the CDC did not explain why it was going to take so long to get the long-COVID data, we don’t know why it will take so long. It does appear, though, that the CDC is not making getting the long-COVID data out a priority.
To be fair, the CDC is funding a monthly ECHO program for practitioners and patients, which is committed to “rapidly disseminate post-acute Sequelae of COVID-19 and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome findings and emerging best practices”.
The delayed data on long COVID, though, left the two Congresspeople without federally produced data that could help them determine funding needs for long COVID. Studies are coming out, but lawmakers pay most attention to federal institutions like the CDC. Emily Taylor of Solve M.E. reported that “The government sources that come from internally are generally considered with the highest respect”.
That will have to wait. In the meantime…
Solve Long COVID Alliance Steps into the Breach
Facing a two-year wait for data that is needed right now to assess funding needs, Solve ME and its Solve Long Covid Initiative stepped into the breach in a way we haven’t seen since ME/CFS advocates took on (and basically destroyed) the PACE trial.
Displaying some hearty data chops, they used mathematical models, population and serology data, and patient-led research, and published natural histories of other post-infection illnesses (e.g. ME/CFS) to estimate how prevalent long COVID is and what its impact will be.
This is advocacy +. It determined what was missing (i.e. hard data about the prevalence and impact of long COVID), and instead of waiting around for somebody else to provide them, produced it themselves. With the CDC out of the picture for the next couple of years, and no one to my knowledge assessing long-COVID prevalence across the U.S., this white paper fills a real need.
The paper will be out shortly but it will estimate that 31.9 million people in the U.S. will have long COVID and 9.6 million will be disabled by it. Those are eye-opening, throat-catching numbers which, if they turn out to be remotely true, make one wonder if the $1.15 billion Congress provided the NIH to study long COVID is going to end up being a down payment.
You can bet this white paper is going to be waved around the halls of Congress again and again and again. We will undoubtedly be using it during what is arguably the most important month of the year for all of us – Advocacy Month.
CDC Disappoints with ME/CFS
If the CDC is behind the ball with long COVID, it hasn’t exactly covered itself with glory with ME/CFS. Much of our attention rightly goes to the biggest medical research funder in the world – the National Institutes of Health – but the CDC’s budget ($11.1 billion) is nothing to sneeze at – and we’ve seen the same kind of neglect at the CDC over time that we have at the NIH.
In some ways, the neglect at the CDC is even more unconscionable as the CDC knows better than anyone the costs of ME/CFS. The CDC’s studies suggest that the 2 million people with ME/CFS in the U.S. cost the U.S. economy up to $57 billion dollars a year, yet the funding year after year, to my knowledge, remains static.
The ME/CFS programs at the CDC and the NIH are not the problem. Elizabeth Unger has transformed the CDC’s ME/CFS program and is a strong advocate. Likewise, Vicky Whittemore at the NIH is squeezing every little bit of juice out of that organization that she can.
They’re both caught, though, in systems with institutionalized patterns of neglect with regard to ME/CFS.
The CDC’s ME/CFS research effort seems to be fading. While it was never a prolific research group, it did provide funding for the seminal Dubbo studies, produced the cutting-edge Pharmacogenomics project, published the informative gynecological studies, and several important population studies. It generally produced a couple of papers a year but has produced only five studies over the past three years, only one of which could be counted as a major paper – a multi-site study that appeared about a decade after that study began.
Dr. Unger’s decision to fund the enormous, and surely very complicated, ME/CFS expert practitioner multi-site study in 2012 has to be applauded. Besides assessing the diagnostics, demographics, family histories, triggers, and the test and treatment results of 450 patients seeing ME/CFS experts, the study included the biggest exercise study ever done and contained a strong subset of severely ill patients as well. The study was going to assess what the different ME/CFS experts were doing, how effective their treatments were, what kinds of patients they had, etc. Its potential loomed large, indeed.
In 2014, Dr. Unger reported that they were “scrubbing the data” and starting to write papers, yet seven years later, the program has produced only one major paper. This was clearly never going to be an easy study, but no study should take ten years to start publishing. One wonders if Dr. Unger is not getting the support she needs from the CDC to complete her ME/CFS work in a timely fashion.
Resources don’t seem to be a problem with her papillomavirus work, however, as Dr. Unger has co-authored dozens of human papillomavirus studies, including several in which she was the senior author, over the past couple of years. Granted it’s not at all clear how much work Dr. Unger did on studies where she is one of numerous co-authors, but it does seem that the CDC is not having her work full-time on ME/CFS. This same situation seems to be present at the NIH where, when last heard, the NIH’s lead on ME/CFS, Vicky Whittemore, was working half-time on ME/CFS as well.
(Studies, by the way, estimate ME/CFS incurs as much or more economic costs to the U.S. economy than the papillomavirus ($16 billion – papillomavirus; from $19-57 billion (CDC). Jason’s study suggested ME/CFS costs at between $19 and $24 billion yearly.)
What to do about all this? Join us on Advocacy Month. We have more of an “in” regarding CDC funding than we do NIH funding, and a couple of years ago we almost got the ME/CFS program’s line-item funding in the federal budget increased. We had the support we needed, but last-minute political winds that had nothing to do with ME/CFS blew that effort away.
- Coming up – The Solve Long COVID Initiative White Paper
Both the CDC and the NIH have failed people with ME/CFS and are now, at least in some ways, failing people with long COVID. Not only do these sclerotic, bureaucratic organizations have trouble adapting to new circumstances like long COVID, they carry in their DNA a history of neglect towards similar diseases like ME/CFS that has been impossible to surmount.
The brief bloom that the Institute of Medicine report spawned five years ago has faded. The emergence of a Long COVID pandemic has changed nothing. ME/CFS is getting support from fewer NIH Institutes than it did five years ago. NIH Director Francis Collins’ words “Watch us…We’re serious now” have been shown to be hollow – words made in the moment with no real commitment behind them.
We watched. We are watching. Nothing the NIH has done has suggested it’s serious about ME/CFS. Maybe it will show us differently at some point, but waiting around is not an option. The only viable option for anyone who wants help in a decent amount of time is to go to the source – to these organizations’ overseers – and that means Congress.
Please participate in Advocacy Month. It presents the opportunity to make a difference for yourself, for your family, for others in need, and for those who come after you.
Plus, check out this long-COVID event.
Solve ME Launches Year-Long Long-COVID Series
Solve M.E. partnered with the Global Interdependence Center for a year-long series: “Long Covid: Research, Policy, and Economic Impact,“ which will explore the effect that millions of long-COVID patients are having on long-term healthcare and policy and the economy.
The next online session in the series takes place on April 12 and will feature speakers Katie Bach, a Nonresident Senior Fellow at Brookings, and Melissa Smallwood, a Graduate Student Researcher, College of Global Futures. The speakers will participate in a live audience Q&A moderated by Emily Taylor. Learn more here.
The signature event of this series, an in-person conference in New York City, will take place on Thursday, May 19, 2022.
Register for our free ME/CFS, fibromyalgia, and long COVID blogs here.