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.
Two years after long COVID was clearly a real thing, the CDC reported it won’t have data on long-COVID prevalence, etc. for another two years.
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.
Into the breach, the Solve Long COVID Alliance stepped – producing a white paper that predicts that almost 10 million people will be disabled by long COVID.
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.
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CDC Disappoints with ME/CFS
The same funding woes ME/CFS faces at the NIH are present at the CDC.
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.
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- Coming up – The Solve Long COVID Initiative White Paper
Conclusion
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.
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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.
I had CFS (really Epstein Barr) following mononucleosis twice, both in the early to mid 1980’s and 1990’s and before this I ran 5 miles daily. In the mid 1990’s, the CDC was allocated millions in funding to study CFS which it “lost”. Not only is this a lie as they clearly instead put the funds towards something they deemed truly important but it also impacted public sentiment. I should have been on disability (the EB caused tumors which resulted in four surgeries from Sloan Kettering to another hospital, some were over 12 hours long, and I ended up having my entire reproductive system and part of the colon removed) and lost the ability to have a family. There is no excuse for the doctors missing the obvious signs of the tumors which grew to be enormous. Before the surgery, I barely could function but dragged myself into work every day horribly ill for years. The CDC is simply deplorable. The comments by the doctors who thought it a fake illness are still deplorable. Shame on almost the entire medical community.
Reply to M you are so right they don’t want to know what causes CFS and now they are doing the same to long Covid which shares similarities with CFS because it is the same reactivation of Epstein Bar Virus during infection with Covid. The pharmaceutical companies and medical world makes money from people with all these mysterious diseases and keeps them all employed also researchers employed looking in all the wrong places. To find a cause and cure they wouldn’t have employment. Well that’s how Capitalism works. All of these people involved in this cover up are guilty of crimes against humanity and show they have no morals.
I find it very strange that with all the controversy over CFS, people don’t take interest in CFS history and ask why all this happened.
For example, the Holmes committee had various names under consideration for the proposed new syndrome to replace the flawed CEBV syndrome theory.
Dr Holmes listed Post Viral Fatigue Syndrome, Chronic Mononuclosis-Like Syndrome and even Myalgic Encephalomyelitis, since the Tahoe outbreak fit the diagnostic criteria for Ramsay ME.
Stephen Straus came with his own preferred name of “Neuromyasthenia”
At the beginning of the Holmes committee meeting, Chronic Fatigue Syndrome wasn’t even on that list.
What people never ask is why did they suddenly lose interest in all the good names and go out of their way to come up with the very worst?
It’s kind of important, for this set the stage for everything that happened ever since, under the burden of this deliberately selected trivializing term.
Cause Tuskegee was already taken?
I feel like you are basically doing straight PR for SMCI these days. It’s too bad you don’t do more balanced reporting, that uses more than a single source, for advocacy and agency issue-themed articles. It doesn’t show community-accountability. Instead it suggests a level of alignment with certain players in the ME & LC world that any responsible journalist would stay away from.
I can see how you feel that way but I don’t think it’s what you think. As I’ve explained in the past, with regard to advocacy I focus almost entirely on legislative actions at the federal level. That’s where I feel the stakes are highest and where we can make the most progress quickly and that’s where I put my attention.
I try to cover ME/CFS, FM and long COVID research and treatment as well as advocacy – 6 big areas – and that means I have to pick and chose. With regard to advocacy that means a steady focus on what’s going on in Capitol Hill.
It was Congress that gave the NIH $1.25 billion for long COVID, it’s Congress that’s working on bills that could provide Centers of Excellence for both long COVID and ME/CFS, it was through Congress that we almost got a bill passed which would have put Congress in charge of ME/CFS funding at the NIH. It was through Congress that we were on track to get the CDC to launch a new prevalence study for ME/CFS. It’s Congress that will send a budget to the President that could contain set up a federal research agency that would finally take into account “unmet disease needs” – something that has ME/CFS written all over it. Federal legislation provides a very, very rich vein to mine for ME/CFS – and that’s what I’ve chosen to focus on.
It isn’t that I’m aligning with Solve ME over ME Action or any other group. It’s that Solve ME just happens to be the group doing the work in the area I’m interested in. If you look at my advocacy blogs you’ll they mostly focus on groups at the federal level such as the NIH and now the CDC which could be affected by federal legislation and the federal budget.
I do not cover reports or letters or petitions directed at the NIH or things like that because we’ve been doing those for decades and I”ve concluded that the only thing that will really make a difference is direct legislative action and that’s what Solve ME happens to be focused on.
ME Action is doing plenty of good work in other areas and I’ve been working on a blog regarding one of those.
Thank you for this, Cort.
Re advocating for Solve ME, I have gotten that feeling from your blogs occasionally too, but in recent years, they really have made some progress. So very different from the old CFIDS Association in the l990s. It’s a problem that sick people have to advocate for themselves, and it seems to me Solve ME and ME Action have grown into real, credible advocates over the last couple of years. It is very heartening. They need to be encouraged, but also encouraged to do really good work, and appreciated, but not allowed to get self-satisfied (which is sometimes their tone).
Thanks again for this and I look forward to the White Paper and to the blog about ME Action.
Thanks Cort, My jaw has been dropping repeatedly at the long covid & ME numbers coming out. I hope they start all reducing the timeline for diagnosis from six months to three, and get pacing information out to patients to prevent PEM relapses and the progressive brain, nerve and muscle damage that results. They could prevent SO MUCH disability and the suffering that comes with it. I keep writing letters, but don’t know if it helps. Thank You, Solve Long Covid Initiative! I have been so worried about all those covid patients since I first heard it could cause ME/CFS
Thanks as always for this good info! I think that the media should report long-Covid statistics, as for Covid. How many cases, per day/week/cumulative. Let Americans see what’s happening, as independent docs report thousands of cases.
Of course, the CDC should be actively seeking and releasing this information. Duh.
From both the medical community and from individuals, who aren’t getting responses from docs but could fill out an intelligent questionnaire and be counted.
The lackluster response of our government to this pandemic and its aftermath, is disgraceful.
Old, sclerotic organizations that don’t adapt well. The CDC showed that in spades during the pandemic. They had past administrators calling them asking them not to destroy the CDC’s good reputation. Now they have a disease entity showing up that I’ll bet they don’t know how to track and won’t really start tracking for a while. Meanwhile the long COVID part of the pandemic continues on and on.
Thank you for your report, Cort.
I got a new perspective on the performance of the CDC recently. In reading Michael Lewis’s the Premonition about preparation for a future pandemic and some of the events upon COVID outbreak, this became clear:
The CDC did not only fail in its job on ME/CFS and now COVID. Inaction is its usual modus operandi. According to this book, it routinely fails to take action on infectious outbreaks. It avoids taking responsibility, pushes decisions upon local, state-based health officers who have little power, then it fails to support them.
It keeps awaiting more non-existing evidence using this as an excuse for inaction. then they may write a paper on the outbreak when it’s all over. It emerges as a non-responsible bureaucracy. Perhaps it needs a rigorous inquiry into its philosophy of inaction.
Ha! Just heard a great interview with Michael Lewis on The Sway podcast. Planning to get the book :). How a formerly respected organization went awry. One problem – having the CDC head be a political appointee.
If the gov buries it’s head in the sand, they don’t have to acknowledge the millions suffering— nor create legislation to help. Bet insurance companies are very happy about that!
Time for class action??
It seems to me the medical community just throws up its hands and says “We give up” because they have no clue how to fix either disease. So they continue to kick the can down the road. Having had ME/CFS for nearly 30 years now, I have to say not a lot has changed for those of us with the disease. I’m now 72 and every day is a struggle just to stay alive.
I wonder how significant the wastebasket thing is; i.e this is going to be really difficult to figure out – is regarding the continuing neglect that ME/CFS receives. Other historical attitudes that persist undoubtedly play a role as well.
Hey Kristi…as a former endurance athlete shut down entirely 3 years ago by CFS, I find the endurance of people like you immensely impressive, much more than what I used to do in the pool or ocean. I am truly sorry for all your years of pain.
I’m getting kicked down the road, too. Wish there was some kind of geographical center we all could be kicked down to so we be part of a compassionate/supportive community (for p/w ME/CFS and/or Fibro).
Solve ME Advocacy month in May will be a really good opportunity to let Congress know the situation, on the ground, with post infectious onset chronic illnesses like ME/CFS and Long Covid.
The prevalence of Long Covid is so widespread, across the world, that the CDC and the NIH are going to look extremely foolish if they’re unable to show a clear and effective strategy for dealing with it’s devastating consequences on the health of the US population and the economy. Congress needs to know how people are being impacted on a daily basis.
One would think they would realize this – and Congress has done really well, thus far. The NIH seems to have put their long COVID studies together well as well. Unfortunately they seem to have largely missed the crucial stage which would have allowed them to catch it in the act (oops!) but they will still be very valuable I’m sure.
ME/CFS is still being ignored in the most important of places – funding – and long COVID (and ME/CFS patients) need Centers of Excellence and educational support for doctors among other things. Those are in some of the bills going around Congress.
The CDC does have the ECHO program but otherwise seems quite lost, and like the NIH, isn’t using this wonderful opportunity to do what they should have done long ago: support ME/CFS better.
It’s so frustrating though because if people receive informed help and support early on in their post infectious onset illness, it could make all the difference. So many people have been made so much worse by being told to push through and ignore their symptoms. Time really is important. Hopefully things will come together eventually.
Biden launches U.S. plan to help Americans struggling with long COVID
By Ahmed Aboulenein and Julie Steenhuysen
“Long COVID, which arises months after a COVID-19 infection, affects nearly 7% of all U.S. adults and 2.3% of the overall population and has cost an estimated $386 billion in lost wages, savings and medical bills, according to an analysis by the Solve Long Covid Initiative, a non-profit research and advocacy group.”
https://www.reuters.com/world/us/white-house-launches-national-plan-address-long-covid-2022-04-05/
The NIH and CDC have been a national disgrace for at least five decades that I know of for their apathy and ignorance regarding ME/CFS. They simply do not care about the millions of people who’s lives have been or are being destroyed due to the lack of research. It’s outrageous and offensive. Many other countries of the world take ME/CFS seriously and have been conducting research but the CDC/NIH are not supporting U.S. research.
Just read this this morning; https://www.medpagetoday.com/infectiousdisease/covid19/98063?xid=nl_covidupdate_2022-04-06&eun=g1240599d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_040622&utm_term=NL_Gen_Int_Daily_News_Update_active
Basically it’s about Biden’s administration rolling out a big treatment plan for people with long Covid.
Almost makes me want to TRY to get sick with Covid so I can get some ‘real’ care! Instead I’m going to get my second booster on Friday…
Won’t someone please help us? Cort, everybody, I feel your pain (and anger)!
Hey cort, probably to early to tell but what do you make of Biden’s recent announcement about long covid and what it could mean for ME/CFS?
I mean, colour me jaded, but if the president saying the words from his own mouth doesn’t lead to some significant funding and progress, we might as well just Jonestown this shit.
Five years should be long enough, meet me back here in 2027 for the kool-aid party.