3.3 million Americans (and probably more) have ME/CFS - relatively new CDC data - higher than earlier estimated

[Mary]

I just read about this. This came out in a CDC report from December 2023, which is not very long ago of course. Previous estimates from everything I've read were up to 2.5 million Americans. The article mentions that Long Covid may be a factor in the higher numbers and I'm sure the total number would be even higher now.

Anyways, I thought it was nice to be able to quote the CDC on such a high number - we're not an outlier!

https://www.cbsnews.com/news/chronic-fatigue-syndrome-symptoms-causes-treatment/

https://www.cdc.gov/nchs/data/databriefs/db488.pdf

Also, the differences between economic, age and racial groups was interesting - lower income groups had a higher prevalence.

 

[Viala]

That's about 1% of the population, it's a huge number.

Still so weird that this disease is swept under the rug. Or maybe they're planning to announce it as disease X when it will be convenient, blame it on some new virus or whatever. Certainly telling everyone that there is a disease which can make anyone disabled within one day would be effective.

Also, the differences between economic, age and racial groups was interesting - lower income groups had a higher prevalence.

That's not so surprising but still sad, lower income means cheap diet and more stress. What makes me wonder here is that Asians and Hispanics are less prone to ME/CFS, could be genetics, the fact that they have closer family relationships, less stress possibly, could be a different diet as well. What is interesting is that ME/CFS is more prevalent in rural areas, one would think that it should be the opposite.

 

[hapl808]

That's not so surprising but still sad, lower income means cheap diet and more stress. What makes me wonder here is that Asians and Hispanics are less prone to ME/CFS, could be genetics, the fact that they have closer family relationships, less stress possibly, could be a different diet as well. What is interesting is that ME/CFS is more prevalent in rural areas, one would think that it should be the opposite.

Also, something I always wonder about with these tests - since we don't have easily measured biomarkers, it's also possible that Hispanics and Asians culturally are pressured to not admit chronic health issues. I was talking to someone the other day who is Asian and only because I mentioned my own health issues, he then shared a range of new chronic health problems. I'm sure he wouldn't have admitted that if he didn't know about my issues.

 

[Viala]

Also, something I always wonder about with these tests - since we don't have easily measured biomarkers, it's also possible that Hispanics and Asians culturally are pressured to not admit chronic health issues.

The other cause can be worse access to a good medical care or even racism, resulting in less ME/CFS diagnoses. Also I am not sure if these percentages are within a single demographic group or apply to a whole adult US population. It's a whole range of factors that could influence these results.

 

[Viala]

This part here is interesting as well, fine print:

NOTES: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was based on a yes response to the following two survey questions, “Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?” and “Do you still have Chronic Fatigue Syndrome (CFS) or ME?”

Which means that these 3,3 million people are the lucky ones who had a knowledgeable enough doctor to recognize the disease. It's more than 1% of the population. There should be an additional question about PEM which would include people that have ME/CFS but did not find a good doctor who could confirm that. Well, just another way to downplay the prevalence of this disease.

 

[southwestforests]

What is interesting is that ME/CFS is more prevalent in rural areas, one would think that it should be the opposite.

Interesting.
Did not know that.
While the cases of two specific individuals are a different matter from the overall prevalence,
Dad was diagnosed in early 1980s at one or another of the several military hospitals in Virginia.
We lived in the metropolitan area surrounding the Norfolk, VA, & Virginia Beach, VA, Navy bases.
I was diagnosed in 2006 in the Kansas City, MO, metro area at a hospital in Lee's Summit while living there.
Now I've lived out in a county seat farm burg for about 16 years.
The only people in my circle of contacts who are known to have ME/CFS are Dad, & via the internet, y'all here, Julie in England, and a few others scattered around this little ball of rock and water.

 

[southwestforests]

Still so weird that this disease is swept under the rug

There is an urge to launch in to an emotion-based editorial about that.
But instead ...
I'll share this from 2022 ...

Yale School of Medicine
Will Long COVID Research Provide Answers for Poorly Understood Diseases Like ME/CFS?
November 01, 2022
by Isabella Backman

https://medicine.yale.edu/news-arti...rly-understood-ailments-like-chronic-fatigue/

“The pandemic has opened the world’s eye to the fact that many chronic illnesses have been largely ignored, dismissed, and ridiculed,” says Iwasaki. “Long COVID has taught the world that these diseases are real, there is a biological basis for them, and we need to study them.”

ME/CFS Is a Debilitating but Overlooked Condition​

ME/CFS has an unfortunate name, says Beth Pollack, a research scientist at MIT specializing in chronic diseases including long COVID and ME/CFS, and a scientific collaborator with Iwasaki. It defines the illness by just one of its many symptoms. “There are misconceptions about what fatigue looks like in ME/CFS,” she says. “It’s not the fatigue that someone who is completely healthy might feel if they were just tired. It’s a very different, complex, and much more severe picture in ME/CFS.”

Symptoms Frequently Dismissed​

Historically, many illnesses that impact women were overlooked until a biomarker was discovered or an accurate diagnostic test was developed. “Many women with multiple sclerosis weren’t believed until the MRI machine was invented,” says Pollack. “Fibromyalgia often wasn’t taken seriously, and it turns out that about half of them have small fiber neuropathy—which by the way, is also frequently comorbid with ME/CFS.”

ME/CFS is no exception.

Or ...

the tl;dr version ...

"YOUR health Doesn't Exist until MY science says it does."

 

[Viala]

Historically, many illnesses that impact women were overlooked until a biomarker was discovered or an accurate diagnostic test was developed. “Many women with multiple sclerosis weren’t believed until the MRI machine was invented,” says Pollack. “Fibromyalgia often wasn’t taken seriously, and it turns out that about half of them have small fiber neuropathy—which by the way, is also frequently comorbid with ME/CFS.”

It would be helpful if ME/CFS had at least one visible physical and common symptom, if not a biomarker, but depression is the same and it is being recognized widely. These are some good explanations of why this disease has been swept under the rug, but I don't buy it, it's not enough.

Also, their 'science' is based on emotional assesment and prejudice. An adult comes to a doctor and a doctor dismisses what the adult says or ridicules it. What are they, first graders? It's like a prequel to Idiocracy.

 

[Florida Guy]

Another thing that is interesting is the fact that 100 years ago, me/cfs was unknown. There may have been a case now and then but had there been 1% or more of the population affected, it would have come to doctor's and people's attention. If it had existed for thousands of years, we would already have a name for it and probably some treatments. So the conclusion is that this is a new disease that did not exist before.

What could cause it? Most likely is the vast amount of chemical waste and pollution that is put into the environment every day. We have talked about how plastic particles are everywhere and get into the body. There is pollution of the air and water, our food is polluted with weed killers, fungicides and insecticides. The fda allows roundup, a known carcinogen, to be used on food crops along with a range of other chemicals.

I would not be surprised if the amish had less health problems than the general population

 

[southwestforests]

If it had existed for thousands of years, we would already have a name for it and probably some treatments. So the conclusion is that this is a new disease that did not exist before.

Sorry, not valid.

For instance:

Autism has recently been discovered to involve Neanderthal genes.
Which indicates there could well have been autistic Neanderthals.

And autism is a 20th century, 1940s era, diagnosis.
The first person to be diagnosed with autism was in 1943.
My mother born in 1940 was diagnosed with autism in early 2000s.
At what point in her life did she catch the apparently contagious autism?
I mean, how else could she have become autistic since the diagnosis did not exist when she was born?
If people were autistic in 1940 then the diagnosis would have already existed in 1940, right?
Therefore since the diagnosis did not exist in 1940 she had to catch the autism contagion from someone later in her life, right?

Groundbreaking Study Unveils Role of Neanderthal Genes in Autism
https://www.loyno.edu/news/jun-07-2024_groundbreaking-study-unveils-role-neanderthal-genes-autism

By Loyola University on Fri, 06/07/2024 - 13:29
Loyola University New Orleans and Clemson University researchers uncover a primary cause of autism

A landmark study recently published in the prestigious science journal Nature: Molecular Psychiatry has unveiled a new discovery in autism research. The research is the first to show that certain genetic traits inherited from Neanderthals play a significant role in autism. Dr. Emily Casanova, assistant professor of neuroscience at Loyola University New Orleans, co-authored this pioneering work alongside her esteemed colleagues at Clemson University.

Fourteen years ago, scientists discovered that modern humans carry Neanderthal DNA, a legacy of interbreeding with our extinct cousins. Since then, researchers have linked these ancient genetic variants to various health conditions, including severe COVID-19, autoimmune diseases, and mental health conditions. This new study adds autism to the list, showing that certain Neanderthal-derived genetic markers are more common in individuals with autism than in the general population.

"Our findings suggest that some Neanderthal genetic variants could play a role in autism susceptibility," said Casanova.

This research sheds light on autism's complex genetic landscape and opens up new possibilities for understanding its origins. It revealed that specific Neanderthal genetic variants are enriched in people with autism compared to ethnically matched control groups. Furthermore, the researchers also found 25 genetic markers linked to the brain that are more common in people with autism.

In addition to these findings, the study discovered genetic markers linked to autism in different ethnic groups. For example, the Neanderthal DNA marker in the SLC37A1 gene was associated with autism and epilepsy in white non-Hispanic individuals. Despite these associations, the researchers emphasize that autistic individuals do not carry more Neanderthal DNA overall compared to non-autistic individuals. Instead, a subset of Neanderthal-derived genetic variations is more prevalent in people with autism and their families.

"We are excited about the potential implications of these findings for autism research," added Casanova. “Understanding the role of Neanderthal DNA in autism could lead to new insights and approaches to diagnosis and a better understanding of the different causes of autism. One example of diagnostics would be the use of these markers in gene panels that could aid in the diagnosis of autism.”

EDIT: finally found it

See also;

https://www.smithsonianmag.com/science-nature/early-history-autism-america-180957684/

Yet even the man usually credited with first recognizing autism, a Baltimore-based child psychiatrist named Leo Kanner, doubted that the profound impairment in social relatedness he first reported seeing in 11 children in 1943 was, in fact, something new in human history. While a Viennese pediatrician named Hans Asperger described something similar, Kanner’s account was more influential. His contribution, he said, was not in spotting the disparate behavioral traits that constitute autism—strange use of language, a disconnectedness from human interaction and a rigid affinity for sameness, among others—but in seeing that the conventional diagnoses used to explain those behaviors (insanity, feeblemindedness, even deafness) were often mistaken, and in recognizing that the traits formed a distinctive pattern of their own. “I never discovered autism,” Kanner insisted late in his career. “It was there before.”

Looking back, scholars have found a small number of cases suggestive of autism. The best known is the Wild Boy of Aveyron, later given the name Victor, who walked naked out of a French forest in 1799, unspeaking and uncivilized, giving birth to fantastic tales of a child raised by wolves; in recent decades experts have tended to believe that Victor was born autistic and abandoned by his parents.

 

[southwestforests]

If it had existed for thousands of years, we would already have a name for it and probably some treatments. So the conclusion is that this is a new disease that did not exist before.

Why that is not valid, illustration number 2,

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1142241/

Possibly the earliest documentation of multiple sclerosis is the case of Lidwina the Virgin, who lived in Schiedam, Holland. In 1395, age 16 years, Lidwina developed an acute illness and subsequently fell while skating on a frozen canal. Later symptoms included blindness in one eye, weakness and pain. She died in 1433.

Then almost 500 years later,

The features of multiple sclerosis were first well defined by Jean-Martin Charcot, neurologist at the Hôpital de Salpétrière in 1868, as 'la sclérose en plaques'. In particular he made the distinction between the tremor of paralysis agitans (later called Parkinson's disease) and that of multiple sclerosis. The three most reliable indicators of multiple sclerosis—intention tremor, nystagmus, and scanning speech—became known as Charcot's triad.

Edit: Yeah, I will tell about it.

Another family thing involving MS here shows that a medical thing long before a diagnosis for it, even a name for the condition exists.

Aunt Susan was diagnosed with MS around the time she was in 7th grade.
That diagnosis stood until a few years before the pandemic when she did one of those family ancestry genes things.
She'd been a nurse while her health allowed, and upon getting the ancestry gene results, went, "That's kinda interesting."
Took it to her neurologist at KU Med center, who went, "It's even more than kind of interesting, how'd you like to make a road trip to the Mayo clinic?"
Mayo Clinic did some tests and came back with, "You do not have MS and have never had MS, what you do have is really bad luck ... this pairing of ethnic genes we now know don't play well together, this second pairing of ethnic genes which we now know don't play well together, and for the hat trick, this third pairing of ethnic genes we now know don't play well together."

I seriously doubt Aunt Susan is among the first humans to have health problems as a result of ethnic genetics.
Who can say how far back in human history that condition goes.
I would not be astonished if it goes well back before we knew there even were genes.


The principle here is,
when humanity and health providers do not yet know in detail what a health thing is, it will get misdiagnosed as something else.

So, no telling how far back ME/CFS may go, and we at this point on the calendar can only surmise what things it might have been previously misdiagnosed as.

 

[Florida Guy]

Yes, MS is another disease that has become much more common. According to your research it goes back at least 600 years and was occasionally noted. We don't know how far back it, or other novel diseases like ME itself, might go. Usually when a noble or wealthy person had a condition then the top doctors were called and notes were made of the symptoms and progress of the patient. If it was a dirt poor field or stable hand, they just got sick and died. So a new disease had to strike someone fairly high up on the socio economic scale before it came to the attention of the medical establishment. That or large numbers of people were dying from it or became ill and couldn't work.

So, if a new disease comes along and only strikes maybe 1 in 10,000, it could be many years before its noted and named. If its something that hits 1 in a million, it might never come up on the radar. Unless some nobleman got it, then at least there would be a mention of it. Could MS have been 1 in a million and then around 1000 years ago became more commonplace? The same could be true of me/cfs and the reason there is so much now of each of those and a number of other ailments is due to bad diet and environmental pollution.

Cancer too has been on the rise especially in the last 100 years along with cardiovascular disease. Our food started to be ultra processed and full of chemicals in recent years. If you read the label of most packaged food you may find 4" of fine print listing all the "ingredients" in the product and you may need a degree in chemistry to understand what some of them are. The fda is easily bribed and manipulated it seems and is happy to allow garbage with known carcinogenic effects in the food chain along with many unknown effects.

You have to be your own doctor and your own dietitian. When you are told something by the establishment, consider the information with great skepticism. Assume its a lie unless they can prove it. We were told to take the covid shot then people started getting worse who took it. In the UK thousands of people are suing the government for forcing them to take the shot which damaged their health.

 

[hapl808]

Another thing that is interesting is the fact that 100 years ago, me/cfs was unknown. There may have been a case now and then but had there been 1% or more of the population affected, it would have come to doctor's and people's attention. If it had existed for thousands of years, we would already have a name for it and probably some treatments. So the conclusion is that this is a new disease that did not exist before.

As others have noted, we just don't know. And 'it would have come to doctor's attention' we know is a silly idea.

Also, think how often you have heard about an author or celebrity who 'became reclusive' at some point. Someone who courted fame and attention, and then just…disappeared. It's always been viewed as some eccentricity - except that's how almost all of my friends view me. I used to travel the world constantly and had FOMO - I would go to gallery openings or rock shows. To a fault, as I would crash afterward - but it never stopped me.

Now they're like: huh, I guess he's 'going through something' or just withdrew. Except all I'm going through is crushing fatigue, headaches, general PEM, reflux, muscle pain, muscle weakness, etc. I have no less desire to do that. It causes me physical pain to watch travel videos, but I can't stop because it's my only connection to the outside world.

I'm in my 40's, but I don't expect any of this to change in my lifetime. Look at Long Covid - everyone getting it in a short period of time. Yet many doctors and people think it's basically mass psychosis and you just have to think yourself better and get off TikTok and you'll be fine.

All that said, I do think chronic illnesses are on the rise - we just don't know exactly why. Pesticides are a good culprit. But so are various forever chemicals, plastics, even vaccines (or the adjuvants specifically), being surrounded by electronics, etc.

Hard to say what's causal, what's conspiracy, what's…

 

[L'engle]

It's probably actually even higher. Tons of people just get the depression diagnosis.

Numerous people are said to have 'a type of depression' where they have a low battery and feel like the gravity has been turned up and can't do things. It even sounds like PEM. This idea of depression symptoms sort of encircling and enclosing me/cfs has gotten really pervasive.

I've been reading along with chat rooms on gaming streams lately, which generally is people around my age (40s) and younger. It's become clear that to be exhausted to the point of disability is just a new form of normal, and most look on it as a 'mental health' problem. The generation that is young now has so much exhaustion, anxiety and inability to focus.

I can only see it getting worse as these younger people get into middle age. Completely different from when I was in my 20s and nobody would admit to feeling tired, weak or otherwise unwell. It's partly that people are talking about it more, and partly that post-viral and other problems are just becoming so widespread.

 

[hapl808]

I've been reading along with chat rooms on gaming streams lately, which generally is people around my age (40s) and younger. It's become clear that to be exhausted to the point of disability is just a new form of normal, and most look on it as a 'mental health' problem. The generation that is young now has so much exhaustion, anxiety and inability to focus.

Yes, and everything being called ADHD. Maybe I have some, but at the same time - my biggest problems isn't focusing or getting started (even though that can be a problem), but much worse the aftermath of doing that. Instead, I have to set a timer when I get on the phone or try a computer task - because I'll enjoy it and get engrossed and then I'll end up in bed for three days. A bit of extra focus might be ADHD, but three days in bed feeling poisoned after that is just not the same thing.

Totally agree with this weird 'new normal'. People saying, "Welp, I turned thirty. I guess it's normal for me to be exhausted for the rest of my adult life." No, it really isn't. My grandparents in their 80's were still traveling. Sure, they had some aches and pains and moved slower than when they were younger - but my grandmother spent more time standing in the kitchen on an average days than I can do in an average year.

 

[L'engle]

Yes, and everything being called ADHD

Yes this too. That's filled in another gap if anyone has trouble getting work done or focusing. Another set of medications to be viewed as the cure to everything. The way I see it an ADHD mind is trying to do more than one thing at a time and spinning out. The brain fog mind is doing 0 or 1 thing and can't even manage that. almost the opposite.

 

[hapl808]

Yes this too. That's filled in another gap if anyone has trouble getting work done or focusing. Another set of medications to be viewed as the cure to everything. The way I see it an ADHD mind is trying to do more than one thing at a time and spinning out. The brain fog mind is doing 0 or 1 thing and can't even manage that. almost the opposite.

That's a good way of stating it. I've struggled with it, as a lot of the modern ADHD descriptions sound like brain fog.

Like Modafinil (an ADHD medication) kind of 'worked' for me, in that it made me feel 20% less cognitive symptoms. But a quarter dose also gave me a three day crash.

Over the years, I've come to believe a lot of my subconscious resistance to doing tasks was a subconscious understanding of the crash that would follow it, but a complete unwillingness to acknowledge or believe that was the case, so it was never something I consciously thought about. It sounded ridiculous to think that an hour of foreign language class would leave me 'wiped out' for 24 hours, so I just always thought I was 'coming down with something' or whatever excuse.

 

[Florida Guy]

think how often you have heard about an author or celebrity who 'became reclusive' at some point. Someone who courted fame and attention, and then just…disappeared. It's always been viewed as some eccentricity - except that's how almost all of my friends view me. I used to travel the world constantly and had FOMO - I would go to gallery openings or rock shows. To a fault, as I would crash afterward - but it never stopped me.

Yes, I would not be surprised if there had been cases in the past. There are so many rare diseases that its commonplace to be hit with something rare. It comes down to how many cases there are. If its one person in a million, its unlikely to be discovered and named. Its more likely to be misdiagnosed and ignored. But if 1% or more start coming down with it, then it gets attention and resources

The thing that made ME so hard to diagnose was the fact that there are no obvious symptoms that can be seen or measured in some way. Fatigue, pain, OI, these are all subjective, the patient reports symptoms but the doctor can't find anything to explain it. So they say its imaginary but when millions come down with something that explanation fails. Then when its finally recognized, funding comes and one day a cure or treatment is discovered. That's were we are now, its being recognized and some funding has come but there still is opposition.

Severe depression has some of the symptoms of me/cfs. People may be bedbound, they may lose strength and have brain fog so its not surprising some doctors want to call it depression. But the people are not depressed or if they are, its because they can't work a job, they can't go out and socialize and or they can't walk anymore without assistance. Depression is not the same as me/cfs

Cancer was once rare now its one of the leading causes of death. Our unhealthy lifestyles and food resources plus industrial pollution have made everything more common and deadly

 

[kushami]

Cancer was once rare now its one of the leading causes of death.

Yes, there are environmental and lifestyle factors, but the main reason for cancer being a leading cause of death is the huge increase in the average human lifespan.

https://www.nature.com/articles/s41416-019-0721-1
”Cancer as a disease of old age”

For millions of years, most human beings died before they had the chance to get cancer.

Quote from article:

As we consider the question of why we get cancer, it is useful to ask an alternative question: why are we, as humans, so good at not getting cancer for at least 4–5 decades. For example, only 1.7% of all cancer-related deaths in both sexes occur before the age of 40 years in the United States of America, and 90% of cancers are diagnosed in those aged >50 years.1

Each adult human comprises roughly 40 trillion cells,2and other animals exist that are far bigger, including the record-holding blue whale with roughly 2000 times more cells. We should therefore marvel at how natural selection has forged mechanisms that allow for the development and maintenance of an enormous number of co-operating cells, for typically over half a century in the case of humans, with life-disrupting malignant growths relegated to later decades.

Selection for these mechanisms has been driven by one overriding factor—reproduction. Since cancer almost always led to the death of its host prior to the past century, there has been strong selection to minimise the incidence of cancer through years where individuals were likely to contribute to future generations (through reproduction and postnatal care).

For most of our evolutionary history, given extrinsic hazards like predation and pathogens, as well as limited food, most humans did not live to the ages where cancer and other disease of ageing are now prevalent.

 

[hapl808]

Yes, there are environmental and lifestyle factors, but the main reason for cancer being a leading cause of death is the huge increase in the average human lifespan.

Huge increase? Maybe. If you remove infant and child mortality, the 'huge increase' in life expectancy is much less impressive.

In the last 100 years, the USA has gained maybe 10 years of life expectancy for the average 50 year old. Probably lost a few during the pandemic.

The huge increases usually include child mortality. If you have two people and one dies at 5 years old and the other lives to 75 years old - then the 'average' life expectancy is 40 years old. But that doesn't mean people were regularly dropping dead at 40 from natural causes.

Just look up anyone famous throughout history and you'll find very few cases of people getting a small infection and dying at 40 years old (although of course they did happen), and lots of cases of people in their 70's or 80's or 90's dying of natural causes.

I think writing off the historic rises in cancer to "we're just so awesome because we live so long" is misleading at best.

Susan Wojcicki (President of YouTube) just died at 56 from cancer. Steve Jobs (CEO of Apple) died at 56 from cancer.

George Washington lived to 67. Jefferson 83. John Adams 90. James Monroe 73. James Madison 85.

Yes, I think overall people are much healthier - especially since the adoption of widespread hygiene (clean water, etc). But this makes it sound like people living into their 70's or 80's used to be unheard of, but it was actually quite normal. Most of my grandparents lived into the 90's (one reached 100), and I don't expect to live nearly as long.