We’ve had chronic fatigue syndrome (ME/CFS) moments and long COVID moments, and now we have our first post-infectious disease moment. “Moments” are indications that something significant has happened which suggests that better times are ahead. In this case, not just for ME/CFS or long COVID but for post-infectious diseases in general.
The CDC’s ME/CFS Program is Back!
This moment was generated by the Centers for Disease Control’s ME/CFS program which is on a bit of a roll right now. (This is its second “moment” in the past year.) The program seemed to hibernate for a while. The CDC, it turned out, was working on its Multisite Clinical Assessment of ME/CFS (MCAM) project.
The studies large network of patients and providers enhanced its robustness.
The CDC bit off a lot to chew with its Multisite project. It was one of four major, highly ambitious, and expensive projects (OMF’s Severely Ill Data project, the NIH’s Intramural study, and the Decode ME project) that took root in ME/CFS over the past ten years or so. The Multisite project has nearly been forgotten, but it involved intensely studying large numbers of ME/CFS patients as they saw a broad array of ME/CFS experts spread across the U.S.
Over the past couple of years, the publications have started to come out. There was a big exercise study suggesting that metabolic problems at the cellular level were causing strange breathing patterns.
Plus, the CDC produced a paper that greatly increased the prevalence of ME/CFS. While the CDC has rarely been a huge driver of ME/CFS research, it’s played a vital role in understanding ME/CFS prevalence and its impact. With the recent publications of several significant papers, you might say the CDC’s ME/CFS program is back.
Is ME/CFS Everywhere?
Dr. Unger moved quickly to compare the effects common pathogens and the coronavirus had on coming down with ME/CFS.
What a clever study. Then again, the “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After SARS-CoV-2 Infection” study is right in the Centers for Disease Control’s (CDC’s) wheelhouse. The CDC, after all, is all about tracking disease. It started out as the “Communicable Disease Center“, tracking the spread of malaria in the southern U.S., and then moved on to other infectious diseases.
Now, fittingly, in the 21st century, it’s tracking post-infectious diseases. Elizabeth Unger and company (this study included researchers from UCLA, Yale, UCSF, University of Wash., University of Texas, etc.) were way ahead of the game when, back in 2020, they began assessing how often infections other than the coronavirus were causing chronic fatigue syndrome (ME/CFS).
The study was brilliantly simple. Between Dec. 2020 and Sep. 2022, it enrolled over 4,000 people with an acute infectious illness in sites scattered across the U.S. and, using tests approved by the FDA, determined if they had COVID-19.
Then they standardized questionnaires including the 2015 Institute of Medicine criteria to determine their symptoms and if they met the criteria for ME/CFS at 3, 6, 9, and 12 months. In the end, they had a post-infectious coronavirus group and a post-infectious other-pathogen group.
Results
“Our findings suggest that COVID-19 is no more likely than other acute infections to be associated with ME/CFS.” The authors.
Maybe nobody but an ME/CFS patient could have expected the results. The big bad coronavirus was no more likely to produce ME/CFS than the mystery pathogen – essentially suggesting that the common cold is every bit as effective at producing ME/CFS as the coronavirus. If anything, the people infected with the mystery pathogen might have fared worse.
Interestingly, the percentage of people remaining ill stayed pretty constant over 12 months (@2.6-3.6%); i.e. they were not getting better.
“The high symptom burden for participants meeting ME/CFS criteria persisted through 12 months in both cohorts, emphasizing the potential for a long duration of illness and disability.”
The study’s findings were strengthened by its size and its spread across 8 geographic areas. Not surprisingly, it made it into a top-notch journal – the
You can see how these people could have been missed. The common cold (which is caused by a variety of pathogens) doesn’t get much study – most people simply get over it – and only a very small percentage of people remain ill. The problem only gets significant when you add in all the people who get colds every year. It’s exactly the kind of thing our big disease-focused medical establishment would miss. We needed a new pathogen to sweep the field to highlight the post-infectious subset.
What a turnaround for the medical establishment this is. Many people with ME/CFS know how hard it’s been to convince doctors that a simple cold could result in a disabling disease. It just didn’t compute.
New large studies are forcing the medical profession to focus on post-infectious diseases.
The Multisite study isn’t the first to find that common infections can cause disabling symptoms. A larger (10,000 person) UK study published in Lancet, which followed people for a shorter period (1 month), found that people with undiagnosed respiratory infections had similarly high symptom burdens, and concluded that there “may be long-lasting health impacts from other respiratory infections that are going unrecognised”, and that “we must take the opportunity to investigate and consider the post-acute burden of other ARIs, to ensure all people with post-acute sequelae can access the treatment and care they deserve.”
Another confirmatory finding came from a 17-year 2023 Taiwanese study, which found that people infected with Varicella-zoster virus, mycobacterium tuberculosis, Escherichia coli, Candida, Salmonella, Staphylococcus aureus and influenza all had an increased risk of coming down with ME/CFS.
Most of these are “common pathogens” that most people quickly fight off. Varicella zoster causes chickenpox, E. coli and salmonella are common causes of diarrhrea, candida is a common fungus, Staphylococcus aureus causes sinusitis.
From the groundbreaking Dubbo studies of the 1990s to the more recent fibromyalgia giardia studies, there’s ample evidence that common infections can cause an ME/CFS-like illness. Aside from Lenny Jason’s infectious mononucleosis college studies, the studies have been quite small and made little impact outside the field.
A wave of support for post-infectious diseases is building
A Building Wave
Things are different now. Large studies that are getting published in prominent medical journals are making it impossible for the medical profession to ignore post-infectious illnesses. Ditto with a recent CDC study which found that ME/CFS is much more common than previously thought.
Post-infectious disease communities are uniting and demanding their illnesses be given equal footing.
The $10 billion / 10-year Long COVID Moonshot to vastly increase funding for long COVID, ME/CFS, POTS, and post-Lyme Disease Syndrome is the most prominent example of this – you can support that effort now. The fight for post-infectious disease Center at the NIH suggests that a new era is coming.
The wave is building. Post-infectious diseases can be ignored no longer.
I live in BC, Canada, where it seems preferable to dump ME/CFS patients on disability benefits (which are below the poverty line) than to provide individualized medical investigation and treatment so that they can resume their formal working lives which contributed to the economy. And in other places with less of a social safety net it’s even more likey that pwME slip into serious poverty and worse.
The cost of systemically neglecting ME/CFS (and all associated post-infectious conditions which tend to fall under this umbrella) is multi-layered (ie quality of life, personal financial, economic cost, loss of active community members, impact on families, etc…). But the economic cost alone is truly gigantic and much of it goes unacknowledged. The economy, and so many other dimensions of life, will benefit greatly from the eventual societal reckoning with post-infectious chronic illness.
I’m in Saskatchewan,Canada.ive been ill with ME/CFS for decades.
What really needs to happen is a national inquiry and to hold someone accountable for this decades long cover up.
I couldn’t fathom how a person could be so severely sick and get completely ignored and lied to and degraded and gaslit by all of the medical doctors I visited.i swear they must take courses on how to over power a patient.
I got laughed at by two infectious disease doctors.
Because I couldn’t get any help I just kept going to a new doctor after the last doctor pooh poohed on me….this merigoround lasted for decades until finally all hell broke loose….and boy ,did it ever….my immune system finally decided to let out a huge war inside of me.And what a war it was…and now I’m left with all this damage.
I’ve now lost all trust and faith in this broken system.
I keep thinking to myself…
Even if the researchers did find a way to reverse this, how would this all get implemented here in Canada with a health system crumbling beneath the weight of years of immigration (Im not a racist)that has been a huge contributor to the failing of the “system”
Canada is teetering and on the brink of a health care disaster.People are dying litterally in the hallways of our hospitals because wait times to see a doctor even for the most serious ill are sometimes 40 hours or more.
Yes, big money spending starting to roll out on researching this malady but I’ll bet dollars to donuts when a cure is found (which i doubt it will)(no entity has ever found a cure for any disease,only treatment)will there be big dollars spent on the roll out of front line treatment.i highly doubt it.
We,at least here in Canada,are going completely the opposite direction of what the hopes and dreams are on these forums
Giardia and fibro…yep,sounds like me.Drank well water the day I got sick October 1981 but also a date many others fell ill according to researcher Maureen Hanson
It’s a dam good thing I couldn’t have got out of bed way back when all the fireworks were going off inside of me because the infection was telling me to go downstairs to the gun cabinet and end all this severe over the top wide spread pain and suffering.
Now I ask…., who are the real SICK AND EVIL people that cover up this decades long nightmare
Oh, perhaps i forgot to mention…I seen Francis Collins on the tonight show recently stating that the clott shots are 100% effective against covid 19.
That’s completely the opposite of what a Canadian (trusted by many)doctor stated recently..,stating the stats show that people who are vaxxed faired exactly the same as the unvaxxed.
How can their be this much discrepancy
One of them must be lying
..can you guess which one?
I can.
My elderly mother and father have each been vaxxed 6 times, they each continue to get covid 19 over and over.Thats all the science and proof I need.