Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

[wabi-sabi]

I think the other challenge we are facing is that there is an overlap.

I think this is a very good way of conceptualizing it. I think a lot about how to sort out these things out I'm trying to read up enough on neuro and psych stuff right now to explain it. That should only take about 300 years...

 

[wabi-sabi]

In my outside experience, there’s nothing perceived about the level of fatigue my son experiences. I can clearly see when my son uses up too much of his energy reserves he pays a price. PEM. . It IS quite actually physical fatigue. Also how can they use the word perceived when the latest studies are showing that there is physiological differences in those that have ME and those that don’t, I’m very annoyed by their choice of wording.

Yes, it's wild how our symptoms can be so misinterpreted. For someone who is stuck in the ME/CFS is a psych disease mindset all that objective evidence that we can see doesn't register on them. That's why they keep saying "I know the symptom is real for you" without any understanding that that is both an inaccurate characterization of the symptom and condescending.

Many years ago when I had a functional brain, I did a degree in philosophy and I think that much of this psych vs neuro or psychosomatic illness stuff in medicine comes from a misunderstanding of mind vs brain. If you don't have the right conceptual foundation, you don't stand much of a chance of interpreting your data correctly.

I'm trying to read up and write about this too.

 

[wabi-sabi]

but for some reason the psychological is leaned upon with us. Why?...is the question.

One very simple explanation is that in psych illnesses therapy is very useful. A skillful and compassionate therapist, can, just by talking and listening, alleviate much suffering and manage chronic illnesses like anxiety or depression. That means the patient's illness is changed by a human interaction, rather than medication or surgery. It also means that the illness was changed by something that happened in the patient's mind.

The implication here (and this is where the argument gets weird) is that the patient has some volitional control over the illness. The therapist shows the patient a different way of thinking, feeling and relating, and voila! anxiety, depression and managed! Because the patient's actions (albeit helped by the therapist) changed the illness, the illness is ultimately under that patient's control. Under your control in this sense magically morphs into your fault. If you don't get better... it's your fault, because you chose not to.

People are still blamed for psych illness in a way that they are not blamed for other illnesses- that's the thing about mental health stigma. Making our illness psych means we can be blamed when we refuse to exercise.

You can really see the blame, and concomitant punishment, when it comes to refusing to feed young women with ME/CFS in hospital in the UK. NICE has guidelines for when anorexic patients must be tube fed so they don't die. Sometimes it's because she is too weak and malnourished to eat. Sometimes this is done even against the patient's will, because malnutrition causes so much brain damage that she won't be able to do therapy or have her mental illness treated until she's not starving. You have to be alive to treat your mental illness. (I heard a really good podcast from Jim Al-Khalili with a doctor who treated anorexic patients and how she explained it to them. It was very compassionate and showed so much understanding of the illness.) Clearly these hospitals are capable of treating serious mental illness appropriately if they choose.

In contrast, ME patients are denied tube feeding when they need it. They are suffering malnutrition but are not fed. We can infer from this that their physical state isn't so important as their mental state- the opposite of the anorexic patients, who everyone understands have to be physically well enough to do therapy. ME patients need to be punished for their misbehavior (refusing to eat) before they can get treatment. Because they are not really sick-it's all in their heads-they can choose to behave properly at any time the feel like. Then they will be rewarded with food. This is the mental health stigma version of treating mental illnesses. The patient can choose to think, feel or behave differently. If she doesn't.. well than that's her fault. And she will be punished.

Bad brain day and having a bt of rant. Maybe I can explain better when I'm clear headed.

 

[Booble]

I think this is a very good way of conceptualizing it. I think a lot about how to sort out these things out I'm trying to read up enough on neuro and psych stuff right now to explain it. That should only take about 300 years...

Ha! Right.
We have to be realistic that the mind has a lot of power over the brain which has a lot of power over the chemicals, the muscles, the heart, everything. I think there are likely a lot of people in that bucket 3.

 

[Booble]

Personally, I believe that the mind are body are one. It may not seem it, but it does exist. How can it not?

All things considered, we're human beings....there is no major division between mind and body. Whether it's inside or outside influences, we're affected. Some more than others.

True, there are those who are ill in the mind only and others who are physically ill only (think of a cut from a knife). That's purely physical. I don't think that many people are affected to such a degree psychologically that doctors can say it's "all in their head." Still, a low grade stomach issue caused by stress is in the fine line between psychological and physical. I know that I'm worse when stress is involved, I'd say that most people are. Look at it as an allergy....allergies make everything worse.

I can actually feel my stomach muscles tighten when stress is involved (I use the stomach, b/c school children often have stomach issues). That's my way of starting my body on its route. The stress can come from within, it's not always outside the person. Most of the time, we're not even aware of the cause.

Our illness has a lot of issues that could be psychological as well as physical. Most illnesses do, we're just one more...but for some reason the psychological is leaned upon with us. Why?...is the question. Lenora

100%.
I think sometimes it feels like "gaslighting" for people because their unconscious brain is trying REALLY hard to protect and distract from psychic pain by replacing with physical pain (and other physical symptoms.) To deny that is even possible is likely a clue.
Of course the sad and frustrating end result is medical professionals viewing ALL physical symptoms as manifestations of this and put everyone into bucket 1 instead of being better able to discern which bucket people fall into.

 

[wabi-sabi]

I think sometimes it feels like "gaslighting" for people because their unconscious brain is trying REALLY hard to protect and distract from psychic pain by replacing with physical pain (and other physical symptoms.) To deny that is even possible is likely a clue.

Ooh, yes. I also think that this connection is something that we need to learn. Think of a little child at school who is being bullied. He comes home everyday with a stomach ache. Parents worried, take him to doctor, nothing is wrong. Child doesn't mention being bullied because he's afraid and ashamed. Teacher stops the bullying, stomach ache goes away.

One of the neurologists that I am reading is Lisa Feldman Barrett, and she talks about how we have to learn about emotions and how they feel in the body. It isn't all innate. The child has to learn that his stomach ache is because of the bullying and the negative emotions that causes. It's obvious as adults, so we forget, that we learned it when we were small. The stomach clenching is innate (I think), but understanding what it means is learning. Maybe some of us don't get taught that?

 

[Booble]

Ooh, yes. I also think that this connection is something that we need to learn. Think of a little child at school who is being bullied. He comes home everyday with a stomach ache. Parents worried, take him to doctor, nothing is wrong. Child doesn't mention being bullied because he's afraid and ashamed. Teacher stops the bullying, stomach ache goes away.

One of the neurologists that I am reading is Lisa Feldman Barrett, and she talks about how we have to learn about emotions and how they feel in the body. It isn't all innate. The child has to learn that his stomach ache is because of the bullying and the negative emotions that causes. It's obvious as adults, so we forget, that we learned it when we were small. The stomach clenching is innate (I think), but understanding what it means is learning. Maybe some of us don't get taught that?

Thanks for posting this. It's so true.

I know some people feel like I'm being dismissive when I even mention this kind of thing.
I'm not. I'm trying to sort things out for myself as well. What is physical from actual physical structures and/or things not working right and what are things not working right because my brain is secretly telling it to not work right. I've been starting to decipher those thing and it's very helpful.

That's why I think my 3- bucket theory is so important.

It's like trying to solve the homeless crisis. You have to first distinguish between those who are drug addicts, those who are mentally ill, those who are having a temporary financial crisis, and those who choose to live outside because they like it. If you say, every houseless person is ________ (pick one)______ and your solution is only around that, you never solve the crisis.

The medical profession thinks everyone is in bucket 1, those who are sick think everyone is in bucket 2.
Maybe we are all in bucket 3?

 

[wabi-sabi]

Maybe we are all in bucket 3?

I suspect yes, since mind and body are connected.

But sorting out how much of each and how exactly they affect each other is the tricky part. Then too, stress and emotional upset makes everything worse, but some things it makes worse than others. I've been reading up on asthma and placebos. So hypothetically, maybe stress worsens asthma more than it does diabetes. (I just made that up, but you get what I'm trying to say.) Then you need to figure out when it is appropriate to prioritize treating the stress first and when do you treat the physical illness first. Of course, an untreated illness increases stress!

 

[hapl808]

That's why I think my 3- bucket theory is so important.

It's like trying to solve the homeless crisis. You have to first distinguish between those who are drug addicts, those who are mentally ill, those who are having a temporary financial crisis, and those who choose to live outside because they like it. If you say, every houseless person is ________ (pick one)______ and your solution is only around that, you never solve the crisis.

The medical profession thinks everyone is in bucket 1, those who are sick think everyone is in bucket 2.
Maybe we are all in bucket 3?

I think that's true, but I think how it breaks down is likely very different than doctors (and maybe homeless advocates) think.

My guess is 90% of homeless people wouldn't be homeless if someone gave them a house. Maybe 10% either choose to live outside or are so mentally ill that they cannot live somewhere. But even an addict would probably rather get some drugs and then go home to their safe house to take them and maybe watch some TV and turn on the heat. I think the idea that most choose that lifestyle is unlikely, and many countries with better social safety nets have a fraction of the number living on the streets as countries without social safety nets.

Now there are probably quite a few who don't have the ability to make enough money to pay rent or a mortgage, fill out the paperwork for benefits, go to meetings, etc.

The way I see it there are three types of people all with similar symptoms:

1) People where the physical symptoms are all manifestations of psychological underpinnings
2) People where the physical symptoms are all based on physiology and not psychologically driven
3) People where the symptoms are based on physiology and exacerbated by psychological underpinnings

The large number of people in bucket 1 drown out the people in bucket #2 (and #3).
You can kind of see if you were a medical professional and 80% of the people you saw were bucket 1, when the 20% of bucket 2 show up it would be hard to distinguish them.

That leaves bucket #2 people without medical assistance, support, medical research, etc.

It's a huge challenge, but again - my guess is the large majority fall into buckets 2 and 3, but generally only bucket 1 is considered if the diagnosis is not easy. The same way that a med student might suddenly see rare illness everywhere (because they're studying it), physicians often start to believe that zebras are mythical animals from storybooks, no matter how many they encounter.

Your disease progression for HIV is highly correlated with depression - but I think it's still likely that the HIV is a big part of the problem.

Yet with MECFS or LC or others, they have elaborate explanations about your CNS and amygdala and maybe your moon in Pisces or other things that are impossible to validate - to try to explain all these symptoms.

They rarely try to do that with gunshot wounds. They worry about why someone was wielding a gun in school, not tell the child that their slow healing from the GSW is because of their psychological outlook (even if it might be related, they primarily try to treat the wound).

I also think in the future we will find that many in bucket 1 were caused by physiological illness.

In other words, we may find that adult onset schizophrenia is caused by a childhood concussion that seemed to cause no ill effects. Or a viral illness at 14 years old could cause a lifelong struggle with borderline disorder.

While the mind and body are connected, medicine (incorrectly, IMO) often focuses on the effect the mind has on the body, and not vice versa.

Even as far back as Jung, there were theories that physical illness was causing these psychological manifestations, not vice versa. It's strange to me that such an obvious thing seems like a somewhat controversial view, meanwhile the vague philosophy of a 'BPS model' is constantly pushed, with minimal validation or real world results, and sometimes significant harm.

 

[Rufous McKinney]

If we assume stressors exist, and are diverse and universal, and if one decides that stress includes a psychological component, which I think most of us can agree is the case, then "psychological, components"..can influence our health outcomes, and or the severity of an other wise physical condition.

I experienced alot of stomach issues as a teenager, and they were quite clearly tied to stress. The PE teacher would yell at me, and within ten minutes, I'd be doubled over, with acid dumping into my stomach. Downing pills and chewing on chalk tablets.

I was able to be a functional, "mild" ME person for decades. All of that concluded in a massive stress event.

It's SIX years later. I have almost no stressors in my life left. I got rid of them all. The only stress remaining is I am sick every day, some days worse than others, and some months much worse than other months.

I know I would be far worse off with the stress, but having very little operating in my space currently, has not remedied this illness.

 

[Booble]

My guess is 90% of homeless people wouldn't be homeless if someone gave them a house. Maybe 10% either choose to live outside or are so mentally ill that they cannot live somewhere. But even an addict would probably rather get some drugs and then go home to their safe house to take them and maybe watch some TV and turn on the heat. I think the idea that most choose that lifestyle is unlikely, and many countries with better social safety nets have a fraction of the number living on the streets as countries without social safety nets.

Now there are probably quite a few who don't have the ability to make enough money to pay rent or a mortgage, fill out the paperwork for benefits, go to meetings, etc.

Oh, I wasn't suggesting that most wouldn't want a house, I'm suggesting that each population of houseless needs a different solution, not just a house. If you give a house to a severely mentally ill person, they are still going to be mentally ill and ultimately find themselves houseless again. If you give a house to a severe meth addict without addressing the meth problem they are going end up back on the street again.
So yes they need houses, but they also need solutions to go with those houses and the solutions a very different depending on the population.

I never said that "most" choose that lifestyle, but I live in a warm climate and I can tell you that in addition to the severely mentally ill, and the highly addicted meth addicts, we also have a population of "tent cities" in parks and beach areas. They rather live there (of course) than in shelters or in crappy housing.

It's a huge challenge, but again - my guess is the large majority fall into buckets 2 and 3, but generally only bucket 1 is considered if the diagnosis is not easy. The same way that a med student might suddenly see rare illness everywhere (because they're studying it), physicians often start to believe that zebras are mythical animals from storybooks, no matter how many they encounter.

I think it seems like large majority are in bucket 2 and 3 because probably that is the majority of those of us here on the forum. However out in the world, there is probably an overwhelming number of bucket 1-ers that cause the medical community then dismiss the bucket 2-ers.

In other words, we may find that adult onset schizophrenia is caused by a childhood concussion that seemed to cause no ill effects. Or a viral illness at 14 years old could cause a lifelong struggle with borderline disorder.

While the mind and body are connected, medicine (incorrectly, IMO) often focuses on the effect the mind has on the body, and not vice versa.

I think they are already doing this.
They are already looking at schizophrenia being caused by a childhood virus!
And like I said in another post, those cytokines are great for clearing up illness but cause all kinds of nasty psychological effects.
There is a lot of medical research these days that is looking at things the way you suggest.
Though certainly not in the general medical doctor's office!

 

[wabi-sabi]

I think they are already doing this.

And this is yet another topic I am trying to read up on. I've certainly come across more stuff on psychosomatic illness, than I have on somatopsychic illness. I don't know if that reflects the available literature or my focus.

I think part for the problem is that when diseases get moved from the psychosomatic category to the physical category, medicine forgets that history. For example, MS (in women) used to be called hysterical paralysis and was a psych illness. Phantom limb pain in amputees used to be thought to be caused by psych response to the amputation. Morning sickness used to be thought to be caused by a subconscious rejection of the pregnancy. (Women are still told it's not a big deal when it is.) Medicine keeps on putting illnesses in the psych category and then moving them out when they learn better. What I don't see is medicine learning the pattern and fixing that, because they forget their history.

 

[Booble]

If we assume stressors exist, and are diverse and universal, and if one decides that stress includes a psychological component, which I think most of us can agree is the case, then "psychological, components"..can influence our health outcomes, and or the severity of an other wise physical condition.

I experienced alot of stomach issues as a teenager, and they were quite clearly tied to stress. The PE teacher would yell at me, and within ten minutes, I'd be doubled over, with acid dumping into my stomach. Downing pills and chewing on chalk tablets.

I was able to be a functional, "mild" ME person for decades. All of that concluded in a massive stress event.

It's SIX years later. I have almost no stressors in my life left. I got rid of them all. The only stress remaining is I am sick every day, some days worse than others, and some months much worse than other months.

I know I would be far worse off with the stress, but having very little operating in my space currently, has not remedied this illness.

Remember that stress can also come in the form of internal stressors too.
Leftover trauma and anger tucked away inside from that PE teacher yelling at you and the like.

I think we all have a lot of that inside of us and our bodies give us physical pain and discomfort and all kinds of weird ass stuff to distract us from it.

I'm not discounting that our bodies are also f'd up too.
It's definitely strange and interesting how all this stuff may intertwine.
A causing A
B causing B
A causing B
B causing A
A and B causing C

What a mess.

 

[Booble]

And this is yet another topic I am trying to read up on. I've certainly come across more stuff on psychosomatic illness, than I have on somatopsychic illness. I don't know if that reflects the available literature or my focus.

I think part for the problem is that when diseases get moved from the psychosomatic category to the physical category, medicine forgets that history. For example, MS (in women) used to be called hysterical paralysis and was a psych illness. Phantom limb pain in amputees used to be thought to be caused by psych response to the amputation. Morning sickness used to be thought to be caused by a subconscious rejection of the pregnancy. (Women are still told it's not a big deal when it is.) Medicine keeps on putting illnesses in the psych category and then moving them out when they learn better. What I don't see is medicine learning the pattern and fixing that, because they forget their history.

Yes, when I was growing up I remember doing a report for school on autism and that is when they thought that autism was caused by "cold mother syndrome!"

It seems that there has always been only a small percentage of the research going in the direction that we are talking about - and those researchers probably don't get much attention (or money).

For example you mention MS in women. My grandmother had MS starting approximately in the early 1930s. She had no feeling in her legs but was determined to walk again. She was able to get some kind of experimental treatment where they attached electrodes to her legs. She went each week to her treatment and one day was able to walk across the street to the phone booth and call her husband and tell him she had walked over!
She went on to being able to walk (with her legs feeling like pins and needles throughout her life), she drove, she played golf until her 90s and lived until age 103.

Despite the success of that treatment for my grandmother, we've never heard of electrodes on the legs being a treatment for MS!

 

[Rufous McKinney]

Remember that stress can also come in the form of internal stressors too.

have you heard of Emotional Freedom Technique, aka tapping? It's a helpful methodology that might be worth looking into for processing some stored up stuff we may be carrying around. It's somehow related to the acupuncture meridians.

I tend to think I"ve done alot of personal work on my "baggage" but there is always room for improvements.

 

[Rufous McKinney]

I was this very sick one year old. From there, things happened that led me to feel trapped by those medical issues.
You would not think an 18 month old would have opinions about how they were treated, or this and that event at a doctors office.

Since I wanted NOTHING to do with these doctors, I was handed over to them over and over again.

Maybe I should work on that one more.

 

[Rufous McKinney]

Morning sickness used to be thought to be caused by a subconscious rejection of the pregnancy. (Women are still told it's not a big deal when it is.)

I was left to die. And I was not rejecting my pregnancy. I was so ill I needed to be hospitalized, but they wont treat you so your left to die.

 

[Booble]

I was left to die. And I was not rejecting my pregnancy. I was so ill I needed to be hospitalized, but they wont treat you so your left to die.

OMG!!!

 

[hapl808]

It seems that there has always been only a small percentage of the research going in the direction that we are talking about - and those researchers probably don't get much attention (or money).

This is the problem in my mind. The proportion is massively lopsided.

Yes, when I was growing up I remember doing a report for school on autism and that is when they thought that autism was caused by "cold mother syndrome!"

And a good example of the issue. Is all autism internal stress and leftover trauma from the cold mother syndrome (blaming it all on mothers, incidentally, and never fathers). Or is the psychological aspect highly over-emphasized?

I think it seems like large majority are in bucket 2 and 3 because probably that is the majority of those of us here on the forum. However out in the world, there is probably an overwhelming number of bucket 1-ers that cause the medical community then dismiss the bucket 2-ers.

I don't know. It's easy to say, "Well, we're mostly people who are in bucket 2 or 3, but out there it's different." When I was more mild-moderate, I thought the people on this forum were causing their severe illness because being unable to make it to the bathroom or being 'crashed' for days and weeks just sounded like depression to me. So I would've said they were all bucket 1. Funny that once I actually experienced that, suddenly I didn't think it was just bucket 1.

Part of my problem with the bucket 1 theory is they have no solutions. The ones who accept, "Ok, I guess I just need to rotate through psych drugs," often end up much worse off than those who refuse that 'help'.

The research often seems to be more brainwashing people into thinking they're better. This works in North Korea, too, where people believe their Dear Leader is personally healing them and protecting them and so forth. I prefer seeing measurable changes - if I could regain the ability to build muscle, exercise without ripping ligaments, not have my vision go, etc.

I never said that "most" choose that lifestyle, but I live in a warm climate and I can tell you that in addition to the severely mentally ill, and the highly addicted meth addicts, we also have a population of "tent cities" in parks and beach areas. They rather live there (of course) than in shelters or in crappy housing.

And I also live in a warm climate, and when I got here 30 years ago those tent cities didn't exist. So did a whole group suddenly decide they'd prefer that life, or did their access to a better life disappear. I saw plenty of tent cities 30 years ago, but they were in third world countries I was visiting, and many of those countries have improved. Meanwhile the USA seems worse than it used to be.

 

[Hope_eternal]

Personally, I believe that the mind are body are one. It may not seem it, but it does exist. How can it not?

All things considered, we're human beings....there is no major division between mind and body. Whether it's inside or outside influences, we're affected. Some more than others.

I agree they are connected. And I have read some pretty miraculous stuff happening with a change to the brain, like changing your beliefs or healing illness with laughter. If you can believe what you read 🤷‍♀️ but I’ve had cancer and try as I might to think positively or imagine it disappearing from my body (and rust me I tried!) the fact remains my brain didn’t get rid of it…. But surgery did. What doing those things did was help me get through the very stressful anxiety ridden time without losing my mind but nothing for the actual illness/disease. I do think stress and trauma can create an environment for disease to take hold so trying to keep yourself resilient and stress free could help in thwarting such undesirable manifestations. We are very complex fascinating creatures.