It’s another potential ME/CFS moment!
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.
The survey found that ME/CFS was much more common than previously suspected – something that can only help.
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.
THE GIST
- 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.
Media Blitz
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
Good Timing
Great timing!
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.
The Big Ask: NIH Working Group Pushes for Strategic Approach To ME/CFS At Council Meeting – Sept 4th
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!
Health Rising BIG (little) Drive Update!
ME/CFS Moments are a nice reminder that our field is making strides.
Thanks to the over 250 people who have supported Health Rising in its end-of-the-year drive!
Plucking “ME/CFS Moments” out is one of my favorite things to do. It reminds that things are moving and the ME/CFS field is slowly but surely growing and developing. If you find them helpful please support us in a manner that works for you. :
While it is nice that CDC acknowledges an increased prevalence, they fail to up-front state the important caveat that ME/CFS is a highly undiagnosed disease, hence their estimate is likely to be lower as compared to other diseases. They do mention the issue of undiagnosed cases near the end of their article, where it is much less likely to be seen. While we do not have solid numbers on the fraction of Long COVID folk developing ME/CFS, if as few as 25% of those with continuing Long COVID develop ME/CFS, I would then estimate 4.6M adults having ME (as opposed to the CDC’s 3.3M). Note too that when comparing to past ME/CFS prevalence figures, the current CDC estimate is for adults only – that is, not including children.
Good points – I wish they had emphasized the under diagnosis of ME/CFS more. It did get into some media articles but not all….I forgot about the kids!
Especially that they DO KNOW that Autism is extremely highly prevalent in Military Families at more than TWICE the GenPop…..m Not to mention all our valiant Troops whom they deliberately mis-diagnose with “PTSD” (actually “NMH”), to avoid liability for proper Medical Treatment! They’re callous Gaslighters, and shill for Big Pharma who make multi-Billions treating symptoms! It’s all par to their Economic War (as I’ve been maintaining since before my Oct. 2000 Testimonies to the HHS’ CFSCC – which they’ve since ‘taken down’ from their search base)!!!!!
Thanks for your work, but… Why anyone (especially in this community) would care about the CDC at this point is baffling. It should be dismantled and its “leaders” like Rochelle Walensky and Many Cohen should be charged with crimes.
Why care about the CDC? One reason might be studies like this that end up supporting the need for more resources for ME/CFS. That’s a pretty good reason! 🙂
Another positive from the CDC – their web page on ME is actually very good & accurate now – a huge difference from 20 – even 10 – years ago.
This is really important for patients.
Agreed. The fact the symptoms overlap with Long covid/vaccine injuries leads the reasonable person to conclude ME/CFS and Fibromyalgia may be related to other, earlier vaccines. They have been using mouse brain cells that are prone to .our viruses and cancer can’t be good. Along with God knows what adjuvants and mercury and aluminum.
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Is there some way to get news organizations to start using ME/CFS in their headlines and stories? “Chronic Fatigue Syndrome” is bad enough but “Chronic Fatigue” (MSN, USA Today) is just plain wrong. Personally I think the acronym makes is sound a lot more serious.
And if it weren’t so serious it would be almost funny how understated the authors are in noting that the true prevalence could be higher.
“As the prevalence estimates in this report are based on a doctor’s diagnosis, adults who are undiagnosed are not included in this analysis. True prevalence estimates may be higher, as previous studies suggest that many people with ME/CFS are undiagnosed”
It would have been nice if they had used the previous studies of how many are undiagnosed to calculate an estimated prevalence number. The 2015 IOM report which they reference in regards to the number of undiagnosed patients makes the following statement:
“Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004)”
Since the IOM references studies that are almost 20 years old let’s say thing have improved a bit and currently 50-75% are still undiagnosed which would make the prevalence numbers 2-4 times higher, or 6.6-13.2 million or almost 5% of the adult population using the higher estimate. This might seem unrealistic given that’s almost 1 in every 20 adults but considering how “healthy” ME/CFS patients can appear and how many keep working whether out of denial or necessity, even as their health declines, it might not be that unrealistic.
Absolutely agree with you re the importance of getting news/media on board with the use of ME/CFS – as opposed to Chronic Fatigue/Syndrome. On the face of it, a subtle difference perhaps – to me, a possible game-changer with great potential to redirect/re-shape perception/attitudes.
Yes, this! There needs to be a real effort to get the powers that be to stop using the term chronic fatigue syndrome. Seems most everyone just thinks “chronic fatigue, yeah I have that too.” The double acronym ME/CFS is a start, but I’d prefer they go to ME. When I informed my PCP there were two different diagnosis codes, he asked which I would prefer. My chart now says ME.
I just wanted to say thank you to Health Rising. I have learned more about ME/CFS from this website than any other. I have been helped by suggestions of supplements and treatments. I give monthly. I hope others of you step up and give at this end of the year donation.
Thanks for your kind words and your support, Gina!
Totally agree with Gina, I give monthly as well.
Well said. Cort provides access to important research, and he shares that information on trends and changes in treatments with us. Support for this website is important because it is how Cort can continue to provide this service and information to those of us that need it.
These numbers of diagnoses are insane. 2% of adults below the poverty line, 2% of adults in their 50s and 60s, 2% of adults living in nonmetropolitan areas, 1.7% of women, 1.5% of white adults and not much less for black adults.
What the hell is the proportion of white women living below the poverty line in rural areas who have a diagnosis? Everyone in those communities must know (or know of) several people with diagnoses.
These aren’t the kind of numbers that should just pop up one day after a review of surveys. This should have been an obvious epidemic.
Is there a centralised system in the US for recording health data? I’m guessing not.
I’m not sure exactly how it works, but ME/CFS just got its own diagnostic code last year. Before that it shared a code with chronic fatigue (as a symptom). https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/icd-10.html#:~:text=The%20ICD%2D10%2DCM%20codes,32.
Don’t forget to include the millions of people with Fibromyalgia when totalling up those with post viral infection diseases.
On the question of ‘’How could these numbers be so high if 2/3 of doctors don’t diagnose ME/CFS?’ It seems like everyone with a diagnosis had to see multiple doctors before getting diagnosed. I saw about 5. And the one who diagnosed me knew immediately.
Also, for people who don’t know anyone with this condition, I used to not tell people I had ME/CFS because of the stigma and trauma. And I’ve found over the years, a lot of people have medical issues they don’t talk about publicly.
Thank God for you Cort! In the oh so dismal landscape we find ourselves in, with calls for help falling (mostly) on deaf ears, lots of confusion…your gift of information and hope is a much needed life line.
I’m wondering if the number of p/w/ME/CFS is inflated. My own questioning of GPs suggests the CDC number is way too high.
My concern regarding the survey is the term “Chronic Fatigue Syndrome.”
Most people on this site agree that “Chronic Fatigue Syndrome” as a name is problematic. Our reasoning (based upon experience) is that all kinds of people respond, “Chronic fatigue?” I have chronic fatigue, too! But I get up and go to work each day.”
I’m concerned the moniker cuts both ways. Are respondents seeing the words “Chronic Fatigue” on the survey and checking “yes” because they’re like, “Hell yes I am tired all the time.” (Even if only two people in a hundred made that mistake it would result in a catastrophically inaccurate number, yes?)
Cort, my apologies if you addressed this and I missed it. (I think a survey of GPs would be more reliable.)
A survey of GPs? Most don’t even recognize ME or CFS, much less know anything about it. I agree with you that the numbers could be inflated but suggest a survey of GPs would grossly underreport the numbers.
I don’t think there’s any real way to know what the actual numbers are. The chronic fatigue syndrome label is a disservice for precisely the reason you stated. Everyone thinks they’re fatigued! The number of people Ive talked to claiming they or a close friend have it is ridiculous because they live completely normal lives, and have no idea of the term ME/CFS, which tells me they aren’t very concerned about it… On the positive side though is that the higher the estimates, the more likely to get some attention.
Indeed- I would have told you I was fatigued before I knew what this brand of fatigue felt like – like I have concrete coursing through my veins. Not simply that I could use more and better quality sleep, as in the “fatigue” of the “before times.”
We need a new word. People think fatigue means “tired” but in reality cfs is more like if you got the flu and then ran a half marathon, it’s a whole nother level.
Most PG’s don’t recognize the symptoms and don’t begin to know how to diagnose the illness let alone treat the disease. There’s a real prevalence of PCP ignorance concerning ME/CFS. They would definitely not be the best source to determine prevalence.
Hey Cort, appreciate this roundup here.
Just wanted to share to you today – this morning from the NIH ACD Meeting, Neil Shapiro, NIH Budget Director announced that RECOVER has secured an additional $200 million from the pandemic funds [the supplemental appropriations] for a second round of clinical trials. Not sure if you already knew, but wanted to share.
Video embedded below from Twitter / X on announcement.
https://twitter.com/Dakota_150/status/1735325502871626031
I don’t believe there are that many ME/CFS/POTS patients. It’s mainly about chronic fatigue in general. If doctors do not recognize or acknowledge it, many patients would never have been diagnosed as the CDC states. This is contradictory to their questions to people whether they have ME/CFS/POTS on the basis that this has been diagnosed by their doctor.
You also see when research is done into ME/CFS/POTS that it usually concerns small numbers. Not only due to lack of money but due to lack of finding patients. This is remarkable. Ask yourself how many patients do you know in your immediate environment who have this disease?
Where are all those patiënts on internet forums?
It is totally exaggerated.
Cort, I think its great the CDC s taking some notice of us, however….I REALLY don’t think ME/CFS and POTS arell that common. Not from what I can see anyway. I dont know anyone around me that has my energy issues (maybe if they are 30 yrs older than me or have cancer, but even then there are not as many random disabling symptoms of so many types with extreme memory issues. Reading this article makes me feel less validated as I try my best and still see how everyone i know of can do more than i can and I’m not lazy!! I just dont feel its tall that ‘common’….maybe im wrong an i somehow am fundamentally lacking in perseverance, but I really dont think at is the case for me (and most of us who truly have these illnesses)
Interesting. I know a ton of people with cfs and pots! Possibly because of my age group? Out of about 30 friends/acquaintances i knew before getting sick, 2 of them have cfs and one has pots. (Now I know like 10 people with pots but that’s likely because I met them at a support group lol, so doesn’t count)
Well. It could be Ember…I’m not out and about enough to really know. It just SEEMS like everyone I know has more life to them than myself, unless they have cancer. Or are very old ( and even there, often they can do more than I. Frustrating!
Oh cool, maybe now myself and others will only lose another decade while all our opportunities, fluid intelligence slowly wave to use while we ride a ride we can’t get off.
Yet another case of the wheel getting reinvented? CDC did something similar in 2007 and found similar numbers. Patients objected back then and Reeves took the flak for trivializing CFS. If anything, 2007 study seemed more rigorous: it actually interviewed subjects.
https://pophealthmetrics.biomedcentral.com/articles/10.1186/1478-7954-5-5
Just like Art mentioned-the estimate only included adults, it doesn’t even count minors. I got sick at sixteen and know many more people online who also got sick when they were teenagers, particularly between 15-19 years old. And I know of multiple mothers who have ME and their children also developed ME which is interesting.
Yep, I got sick at 15. My neurologist and I are convinced there’s something about long term autonomic nervous system stress that primes people for getting post viral issues. The amount of people who have the same story of some sort of stressor (usually they’re high masking neurodivergent, queer, straight A students) and getting cfs sometime in highschool really points towards something wrong with the ANS.
The question is really, how many cases of “gifted kid burnout” were really chronic illnesses getting triggered?
Ive had a surprising amount of conversations where people think im a psychic because I meet them in the elevator at my college and they mention a chronic illness, 99% of the time when I say “let me guess, gifted kid, autistic, crashed and burned in high school because chronic illness?” I end up hearing “omg, how did you know???”. It’s absolutely wild how often that’s the story, you’re right it needs to be looked into more.
(Oh and yes the genetic component is another neglected piece. My grandma passed away of a medical mystery and we’ve been wondering if it was something related that passed down a genetic predisposition to me.)
Yes, yes and yes to you Ember! Hit the nail on the head with your comment.