Whoa. Another ME/CFS moment. “ME/CFS moments” are events that appear to signal that things are changing for the better for this long-neglected disease (ME/CFS). The disease is being accepted more, and gaining traction in ways that it hadn’t before. With several recently, the “ME/CFS Moments” are on a roll right now.
Our last couple of ME/CFS moments:
- MEAction’s Mayo Clinic breakthrough – in a come-to-Jesus kind of moment, the mighty Mayo Clinic reverses course, accepts ME/CFS as a major illness, and revamps its treatment protocols.
- Metrodora – a new medical and research center focused entirely on neuroimmune axis disorders such as chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, postural orthostatic tachycardia syndrome (POTS), and migraine emerges.
- STAT Earpiece – this unique earpiece was designed specifically for diseases like ME/CFS, POTS, and other forms of orthostatic intolerance.
The CDC’s ME/CFS Moment
Now it’s the Centers for Disease Control (CDC) turn. We haven’t heard much from the CDC program for quite a while. Its chronic fatigue syndrome (ME/CFS) research program seemed almost to disappear from view for a while, but things have picked up lately with its large (and really interesting) 2022 exercise study, its NASA lean study, and an NK cytotoxicity study – all of were done as part of its big multisite study featuring ME/CFS experts.
The NASA lean study was notable in that it found that hypocapnia (low blood CO2) – which is usually NOT tested for – was the most common abnormality found. The NK cell study provided a surprise – it did not find differences in NK cell cytotoxicity and did not recommend that the test be used. (Because the study used “next-day testing” of fresh blood, I wonder if the time lag may have produced a problem. I seem to remember Nancy Klimas’s lab doing same-day testing.)
A Missed ME/CFS Moment!
In fact, we missed a big ME/CFS moment! We may see this pattern again where something happened that was more significant than we realized at the time.
This ME/CFS moment occurred when somebody or some group of people found a way to get ME/CFS into the National Health Interview Survey (NHIS) in the U.S. The NHIS is “the principal source of information on the health of the civilian noninstitutionalized population of the United States” and it has been collecting health data since 1957. Getting into the survey is what made this current ME/CFS moment possible.
CDC Survey Dramatically Boosts ME/CFS Prevalence in the U.S.
The CDC’s main focus has always been epidemiology – the study of disease prevalence. That’s where it’s really made a difference with ME/CFS in the past and that’s where it did the other day.
- Another “ME/CFS Moment” – a sign that the ME/CFS field is making a significant step forward has happened. Past moments included the MEAction’s work to revamp the Mayo Clinic’s treatment paradigm, the emergence of Metrodora – a large facility designed specifically to treat our diseases, and the development of the STAT earpiece to track blood flows to the brain.
- This time it’s the CDC! A nationwide CDC survey found that ME/CFS is at least 3xs as common as previously suspected – making it several times more prevalent than multiple sclerosis, lupus, and rheumatoid arthritis.
- Plus, because ME/CFS is so underdiagnosed the true prevalence of ME/CFS is likely much higher – a fact that many media reports picked up on.
- The study also destroyed the myth of ME/CFS being a “yuppie disease” that mostly affects disaffected people with money. Instead, the survey found that ME/CFS was much more common in people with low incomes and in rural areas.
- The media jumped on the story and it appeared in many outlets. The report comes at a good time as the Strategic Roadmap project is nearing its conclusion at the NIH. Strategic roadmaps are designed to boost a disease’s standing and hopefully increase funding and finding that ME/CFS is so much more common that suspected can only help.
- Several other “ME/CFS moments” could show up in the not-too-distant future. The Solve ME Initiative is trying to get ME/CFS embedded in the NIH’s long COVID Recovery Project and is attempting to create an Office of Post-Infectious Illnesses which includes long COVID, Post Lyme Disease, ME/CFS, fibromyalgia, and others at the NIH.
The survey was “the first nationally representative estimate” of ME/CFS done. When the CDC does these kinds of surveys, it doesn’t go small. From 2021 to 2022, it asked 57,000 Americans two questions:
- “Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?”
- “Do you still have Chronic Fatigue Syndrome (CFS) or ME?”
About 1.3% of respondents answered yes to both conditions. That may not seem like a lot, but in the chronic illness world, it is. That’s 3x’s as many people who are believed to have multiple sclerosis or rheumatoid arthritis, and over 2x’s as many people who have been told they have lupus.
While the study surely picked up some people with long COVID, whether that’s a problem or not depends on your interpretation. As Brandon Yellman of the Bateman Horne Center said “We think it’s the same illness”. Indeed, if ME/CFS represents a collection of infectious triggers, then, at least at this point, it makes sense to include long COVID within it.
Yellman noted that long COVID is much more likely to be diagnosed than ME/CFS, and indeed, one media story cited one ME/CFS patient who now uses long COVID as her diagnosis when she goes to the ER because it’s accepted immediately.
Plus, because most people with ME/CFS are probably undiagnosed, the real number of people with ME/CFS is likely much higher – something that was not lost on Daniel Clauw MD, who told the Associated Press that ME/CFS has “never, in the U.S., become a clinically popular diagnosis to give because there’s no drugs approved for it. There’s no treatment guidelines for it,” (That was a nice way to get three big issues on the table – low diagnosis, no drugs and no widely accepted treatment guidelines.)
The study also found that women were more likely to have ME/CFS, that people with higher incomes were less likely – not more – to have it (bye-bye “yuppie syndrome”), and that people living in rural conditions were more likely to have it as well.
The media ran with the findings and focused on the key points: “more common than expected” and “not a rare disease”, leading to some pretty eye-catching headlines.
- CDC: More Americans have chronic fatigue, a debilitating disease, than previously known – MSN (“debilitating” – nice)
- Exhausted America: CDC says 3.3 million people suffer chronic fatigue syndrome – PBS News Hour (“exhausted”!)>
- Millions of US adults have chronic fatigue syndrome, CDC reports – Fox News (“millions”!)
- Chronic fatigue affects far more Americans than previously thought – USA Today (“far more” :))
- Chronic fatigue syndrome estimated to affect 3.3 million in U.S., more than previously thought: – Stat News
- Chronic fatigue syndrome is more common than some past studies suggest, CDC says – AP News
With the survey results being published as the NIH is starting to wrap up its Strategic Roadmap report, the unexpectedly high numbers of ME/CFS patients can only emphasize how much more support this field needs.
Compare the $13 million the NIH expects to spend on ME/CFS this year with the $125 million it’s spending on MS, the $95 million it’s spending on RA, and the $143 million it’s spending on lupus. Then add in that ME/CFS is significantly more functionally disabling than MS – and one would hope that the NIH would find a way to steer more money our way.
If not, the new number provides a great talking point we can make with Congress.
The Post-Viral Diseases Prevalence
Given the underdiagnosis of ME/CFS, we could conservatively estimate that the real number is at least double the CDC figure (7 million people). In 2023 the CDC estimated that 6% of adults had long COVID and that more than one in four reported “significant limitations in their ability to perform day-to-day activities”. That would roughly put the number of long-COVID patients with an ME/CFS diagnosis at about 4 million people.
Then there’s greatly underdiagnosed postural orthostatic tachycardia – which can begin with an infection – which clocks in at least 500,000 people. Add in the 1 million people with post-treatment Lyme disease to the total and that brings us to well over 10 million people – and this doesn’t include multiple sclerosis and other autoimmune diseases that often have an infectious onset.
The post-infectious illness group is starting to look pretty darn big. Time to take these diseases seriously.
Other Possible “ME/CFS Moments” Ahead
Other possible moments are underway. The NIH Roadmap for ME/CFS project is designed to create a strategic plan for ME/CFS at the NIH. Strategic plans boost the standing of diseases there and can lead to increased funding. If the Roadmap – which was begun by Walter Koroshetz, Vicky Whittemore, and the Trans-NIH Working group – substantially boosts funding, the Roadmap effort will constitute a major ME/CFS moment.
At least two other possibilities are underway. Getting ME/CFS into the RECOVER Initiative effort would be huge for this disease. And so would be creating an Office of Post-Infectious Illnesses at the NIH. Both are being pushed by the Solve ME Initiative – and both would certainly constitute more ME/CFS moments. Time will tell!
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