Discussion in 'General ME/CFS Discussion' started by knackers323, Jan 17, 2014.
Folate added to foods, pollution, EMF, new infectious disease?
Complete incapacity to distinguish ME from a psychiatric illness?
I do think that prevalence is probably worse, and there is a huge list of factors that might be involved, probably numbering in the hundreds of thousands. The types and range of chemicals in our environment now is huge, and they can combine with each other to produce new and untested chemicals.
Most likely though is its a colossal failure to diagnose. Even now they get it wrong on a regular basis.
yeah, "synergy" is the "elephant in the room": medicine and society simply cannot see or cope with it
the complexities can be mind boggling but we're now getting computational power that can work on such
forgot details alas sorry brain drain but recall some item few years ago showing the effects of several chemicals at low level, surprised researchers in the toxicity when combined
too much of Science is base Reductionism, which is simply not how the "real world" works.
Reductionism is necessary for research but must always be understood to be severely limited when compared to real world effects.
The first time someone nitrated glycerine they got a hell of a surprise
the breakdown products of DDT, then added to PCBs, lead, mercury and then radionuclides for nuke tests, and EMF...and so on, well the potential interactions could be nasty, and Humans are very variable, 70 trillion basic combinations of our chromosomes, we are NOT all alike hence morphine or warfarin for example can cause deadly reactions in some patients but not others.
So why should it be surprising that some folk are the literal "canaries in the coal mine"?
There are two things: did it really start 40 years ago? And has the prevalence progressed over the last 40 years?
I think it existed well before, but just 80 years ago we could not discriminate between most neurological and auto-immune illnesses. Today diagnostic tools are much more accurate and Internet also has an effect on doctors' knowledge of illnesses. 40 years ago, a doctor had for his entire life the knowledge he learnt at uni and that was it. There was barely any update. Also, women were supposed to stay at home. So it was impossible to have figures about women missing work for health reasons. Additionally, the productivity requested by employers was not what it is today. Today's pace of life is such that anyone with a mild form of the illness is more likely to be identified and to deteriorate due to the pressure exerted on him/her. In a more relax environment, the person would not even have perceived that she/he has an illness, let alone ME. There is therefore no reliable way to know the past prevalence of the illness.
It is very possible that the prevalence of the illness has increased over time, not only because of the pace of life, but because people are different too. In the 40's when antibiotics started to be used in children, many children with defective immune systems escaped death and went on to have children. They may have passed their defective genes. There is no natural selection any longer (at least in rich countries). I think this is an increasing problem, and many diseases with a genetic component tend to be more prevalent. Additionally, there is the issue that there are many more "artificial substances" in our environment that it used to be. I once read that between the 40s and now, 40,000 new substances were introduced, such as PVC, paints, phthalates, etc. It would be naive to think that it has no effect (individually or in conjunction) on our bodies.
Yep it may be that it wasn't diagnosed before then, but you would think there would be some accounts or even other outbreaks of it before this time if it existed then.
There is also this issue. Prevalence might have increased, but the sheer number of people is also higher. Even with the same prevalence of 80 years ago the number affected would be higher.
New fast paced lifestyle, high stress, poor diet and nutrition, artificial preservatives, chemical pollutants. That's what I believe.
Agreed on all the above, Alex. I also wanted to add my following thoughts:
- According to the enterovirus theory, this type of viruses suspected to trigger the illness existed before, but were not the prevalent ones within their micro-universe. Viruses, like any living organism, compete with each other for space and resources, oftentimes violently; evolution in motion. Enteroviruses do the same.
When the human race eradicated the scourge of polio by vaccination in the 1940s, it basically left the field open for other similar enteroviruses to take over. The idea is that polio was the top dog in their micro-world, and since we removed it, other less prevalent enteroviruses took over.
This explains the increasing outbreaks since the 1950s, and the randomness of the infection, how not everyone gets infected depending on state of the individual's immune system. Funny enough, from the early onsets, doctors called this disease "non-paralytic poliomyelitis."
- The atrocious dismissal of this disease as nothing more than hysteria. The treatment that the cdc, politicians, and the heads of the medical profession gave this disease did decades of damage to the cause of finding a cure. They laughed it up, they called it "chronic fatigue syndrome" or the "yuppie flu" (I guess calling it "the vapors" would have been too much), and dismissed sufferers as mental cases. Remember, these were the same people that laughed at aids during interviews on camera, at a time when it was spreading out of control in the early 1980s, and the population was terrified about this new disease. Seriously, who are these people? How cold must your blood be to adopt such inhumane attitudes? Did these people forget their hippocratic promise, or were they in just for the money?
Lots of CFS patients have died since the original outbreaks. Others have been deeply sick for decades. Decades!!! With no relief or end in sight. As the video by SOnset "Mind the Abyss" explains in dramatic fashion, Saturn has completed a full orbit around the sun since he first became ill --that is 30 years. Unfair and enraging.
- Environmental toxins: In the last few decades pollution has increased, but also the spread of biotoxins. The United States has suffered a massive spread of toxic mold, that has made millions of homes unlivable from coast to coast. I read recently that the spread of toxic mold in the last 40 years can be explained by the use of less quality construction materials in recent decades, making many homes an ideal field for toxic mold to flourish.
Let's add to this awful diets of chemically processed foods, and a more stressful lifestyle, and the cocktail for disaster starts to seem plausible.
Many people have reported their initial onset was triggered by exposure to toxic mold. I know i lived in a crappy pre-war apartment with humidity and mold issues when I first became ill. I'm pretty sure the constant exposure to biotoxins pushed my system over the edge, likely allowing whatever pathogen is responsible for ME/CFS to take over and camp at will in my body. I strongly suspect that mold exposure was possibly a contributing factor to my first onset.
Just my two cents.
True. Given my personal experience, I am 100% convinced that ME/CFS has an infectious trigger or triggers. No doubt in my mind. But the infection is not rapid and requires certain immune conditions.
A few years ago the cdc estimated there were 500k people with ME/CFS in the states. Now they are saying about 1 million. If my personal experience is an indication, there must be many millions more. I spent 14 years chasing my tail, from doctor to doctor, from a ridiculous misdiagnosis to another, until I ended up with a doctor that actually was able to test me, recognize the symptoms, and confirm the diagnosis.
I truly wonder how many more millions there are out there, trapped in the same stupid web for years, being misdiagnosed with inane and unaware doctors. I wonder how many are taking the antidepressant du jour (my family doctor was a notorious antidepressant pill pusher when he didn't understand your case), wasting precious time to get the proper diagnosis and a path to potential recovery.
Not one million... Millions, I tell ya!
Add in micronutrient depletion in soils. Very little of our food is as nutritious as it used to be. Organic farming has an edge in this, because organic practices often improve soil micronutrient status (mulch, compost etc.)
One of the traps we should be aware of is the reductionist trap. It might not be one reason, one issue, it might be twenty, or a hundred, working together. Also it might be say twenty reasons out of a hundred, but which twenty might vary person by person.
I would say because of the same reasons other autoimmune illnesses are on the rise. The gradual increase in mass vaccinations which occur in the developing bodies of children who will later become autoimmune people if genetically prone, stressful modern life, poisonous food, water and air and the like are to blame in my opinion.
Yes and no.
There are some accounts suggesting ME. I read somewhere that Darwin may have had the disease. Florence Nightingale too. ME does not have a very specific symptom that distinguishes it from other illnesses. ME would look like any terminal cancer or MS. A hundred years ago, the terms neurasthenia and 'languors' were used, some sort of dustbin terms for anything that involved fatigue. Let's keep in mind that at that time, people had numerous infections combined with poor nutrition. Proper sewage, drinkable water, bacteriologically clean food, sufficient food, good dental care, etc mean that we have less infections than those living 200 years ago. The same symptoms ME patients have today would be considered in patients of 1800 as infections, nutrient deficiencies, and so on. The difference is that today our symtoms stand out more because infections and deficiencies are less feequent and can be identified.
Reporting outbreaks is a relatively new phenomena (the last century or so). Before, there were virtually no reports except when diseases quickly killed a large portion of the population, such as plague or cholera.
One more note to drive my previous point. Not sure how statistically significant this may be, but in 2013 alone, three of my 300-plus Facebook friends/acquaintances were diagnosed with ME/CFS. Two of them bed-ridden. Two of these three are in NYC, and the other is a former coworker from Boston.
That's three people within my social media circle in a single year!
I think that 1 milion estimate from the CDC may be way too optimistic, frankly. Yet at the same time, the CDC has classified ME/CFS as a "Priority One emerging disease". Hmmm...
Yeah maybe but I wasn't talking about one or two hundred years ago. What about 50 or 60? I wonder what it was at that time that specifically happened or that was different enough to make them give it another name.
The enterovirus theory is very interesting.
During the first part of the 20th century, the x-rays started to be used for medical diagnoses. The first antibiotics were discovered. That allowed some illnesses marked by deep fatigue to be identified and sometimes treated, such as cancers (some cancers with large tumours can be identified on x-rays), the then very prevalent tuberculosis (it does not always involve heavy coughing, people can have skeletal tuberculosis), tertiary syphilis, etc. With these progresses, the attitude towards illnesses has changed. Previously, having tuberculosis was a taboo likewise for STD. Once some treatments were available, people started to see their doctors. So that huge group of exhausted patients became smaller once we treated those with TB, STD, etc. We still had in the group people with MS, auto-immune diseases, coeliac disease, etc. Scientific progress was made (evoked potential test...) and the group of patients with 'unexplainable' fatigue became even smaller. In 1969, Dr Ramsay then created the specific diagnosis of ME. But I do not think that because the name 'ME' appeared for the first time in 1969, we should then conclude that the illness appeared for the first time in 1969.
I do not think there is a single event that can be singled out as "the year it emerged" (unlike HIV for example). It does not mean that event does not exist. It just means, in the current state of medical knowledge, we cannot identify that moment in time. It may be very well be the case that in the future we will identify different sub-groups of ME, and that one specific sub-group is an illness related to a specific event (such as the use of a drug/vaccine (that enterovirus suggested above) or some food additives...). For example, 40 years ago we did not know about the different types of hepatitis (A, B, C..). Now we do and we know that the massive spread of HepC has been facilitated by blood transfusions (very much fashionable in the 60s) and the sexual liberation of the 60s. These factors were nonetheless irrelevant for HepA for example. But for the moment for ME, it seems we just do not know.
I think there is a thread in this forum where people mentioned that some of their grand parents probably had ME and that was well before 1950. I personally believe the ME has been around for more than a century.
From a methylation perspective:
I think it's probably always existed, but was much rarer. The stressors of today's society are like a perfect storm for all methylation based diseases - there are about 30 of them including autism, cancer, Parkinson's and Alzheimers, and of course, ME.
I've gotten into doing geneology the past year or so and have looked at many death certificates from 100 years ago or more. You see stuff like strokes, heart attacks, tuberculosis, alcoholism, infectious diseases. You don't see any "modern diseases" like cancer, ME, etc., even "reading between the lines".
I can trace the MTHFR genes in my family because the same genes that cause strokes and heart attacks can also cause ME.
Great grandparents generation - strokes, heart attacks, infectious disease.
Grandparents - strokes, heart attacks, diabetes, infections.
Parents generation (the Greatest Generation) - cancer, cancer, cancer, cancer, cancer, diabetes, diabetes, depression, anxiety, ME, thyroid, Parkinson type syndrome.
My generation (Baby Boomers) - arthritis, cancer, diabetes, thyroid, adrenals, ME, ME, FM, ADD, high blood pressure, high blood pressure, depression, anxiety, bipolar, OCD, etc. etc.
Next generation - still young, but already a thyroid problem. Thankfully, no autism.
Stressors = everything mentioned by the posters above = non-nutritious food, food additives, "folic acid", cleaning products, paints, perfumes, personal care products, plastics, car exhaust, water pollution, air pollution, vaccines, mercury fillings, GMOs, hormones, antibiotics, pesticides, herbicides, etc. etc. etc. etc. etc.
I mean, what isn't poisoned in our society? Those with MTHFR mutations (us and our families), are truly the "Canaries in the Coalmine".
I think when changes come slowly, the human body can adapt. Over the generations people have adapted to some environmental changes. For example, in Ireland, thousands of years ago, the human body adapted to the point that adults could tolerate lactose (not only children). And Irish people were able to survive on a milk-based diet during long winters. Same for wheat that was modified/crossbred over the centuries to have the product we now know. Through that very slow modification, gluten appeared and over the generations it was tolerated. There are just 3 or 4 generations per century. It is not a lot of time to pass on the newly adapted genes.
Perhaps the problem today is that there are too many things our bodies need to adapt to, and we simply do not have enough time.
@Tito, I agree: once upon a time cancer was the wasting disease. There was only one type. At other times anything not understood was hysteria, neurasthenia or similar. A cancer patient was essentially diagnosed with conversion disorder by Freud, and even after they had died from the cancer Freud insisted the patient's psychiatric state caused the cancer.
What people are diagnosed with is cultural, and limited by the scientific data, technology and cultural practices of the time.
For diseases in which there has been a massive rise in prevalence in recent times, one prime example is autism. The increase is truly massive. Something is very very wrong, and there is not enough research or interest to get a definitive answer. Failure to research these things is a huge problem.
Governments are worried about future welfare and medical costs, yet chronic disease is not getting much research funding. I also think most governments in the world, especially the more affluent nations, are relying on others to find answers. The country being relied on the most is the USA. This leads to an undue burden on the US to fix things. We need global funding, with all wealthy nations supporting it. The US might be failing the ME community, but the world is failing the chronic disease community.
The reinvention of ME into CFS is also a huge part of the lack of recognition. Old research is being ignored. Its like there is a cut-off in 1988, or perhaps 1984.
Another issue is reporting. A hundred sporadic (not cluster) cases of a weird fatigue disease in a leading metropolis in 1950 would probably go unnoticed. Now we have reporting systems and the internet. It still often goes unnoticed but not nearly as much as sixty years ago.
the W.H.O. some years ago published a worrying report showing that soil quality across the DEVELOPED world had dropped alarmingly in recent decades
this can be easily seen because a BBC program was at a farm where they practiced 1800s style faming next to modern farming
the older farm style, the soil was at least 1 inch deeper, richer (and 1 to 2 inch thicker over many acres is a HELL of a lot)
harsh chemical farming methods, ripping up hedge rows etc, has been turning soils to clay, water flash floods off them, no hedgerows to break floods, trap soil or host natural predators etc
thus soil quality dies
our whole system is a LIE, it's over use: over drugged; over vaccinated; over pesticided etc etc
Oh, also reading up on nuke stuff, need to get back to you on it, but suggestion from one expert is that by late 60s, 400,000 American children and foetuses had died because of massive widespread nuclear contamination.
And folk may think that's impossible but remember, well over 100,000 Americans a year were being butchered on the roads every year by late 60s to early 70s, a Hiroshima every one or two years.
Since they were sacrifices to GM and Ford, few folk gave a damn, comparatively, where as they'd be freakin' their heads off it was in a war or terrorism. it's the old saw about the frog in the pan of water on the cooker.... :/
And cars were poisoning the world with lead fumes as well (tetraethyl lead in fuel)
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