Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

[SWAlexander]

This is the article ME/CFS patients need to print out and leave at some doctor's desks.

Excerpt:
The ME/CFS group showed no signs of muscle fatigue, and performed normally on cognitive tests, despite reporting greater cognitive symptoms.

And yet the immune and gut microbiome changes clearly impacted the central nervous system in several ways. People with ME/CFS had lower levels of chemicals called catechols, which help regulate the nervous system, in their cerebrospinal fluid and less activity in a brain region called the temporal-parietal junction (TPJ) during motor tasks.

The TPJ drives the motor cortex, a brain region in charge of telling the body to move, so its dysfunction might disrupt how the brain decides to exert effort, the researchers think. In turn, these changes might alter patients' tolerance for exertion and their perception of fatigue.

"We may have identified a physiological focal point for fatigue in this population," says Brian Walitt, lead author and medical scientist studying ME/CFS at NINDS.

"Rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform."
https://www.sciencealert.com/landma...-fatigue-syndrome-is-unambiguously-biological

 

[Judee]

Yeah but Brian Walitt believes that this is a psychological disease (he's said that often in the past) and he phrased that part of it to make it sound like what they found in the temporal-parietal junction was a result of the patients choosing to put forth less effort, almost like it was the brain's conditioned response because the patients were "purposely" pacing their energy.

At least that's how I understood it and what others seem to be saying as well. https://forums.phoenixrising.me/thr...-chronic-fatigue-syndrome.91602/#post-2454161 (Read post #9 for some of his previous comments.)

https://thesicktimes.org/2024/03/19...for-a-retraction-of-the-nih-intramural-study/

 

[SWAlexander]

I understood it and what others seem to be saying as well.

Hi Judee,
I've noticed that many psychologists and psychiatrists seem to adhere to certain beliefs that, to my understanding, cannot be conclusively proven. I'm puzzled by their motives for doing so. Specifically, the temporal-parietal junction acts as a conduit for transferring information, serving as a junction where numerous thoughts and fantasies can merge. It is widely recognized that the amygdala is primarily involved in the emotional processing of past traumas. None of it will end in physical weakness.

However, what appears to be either overlooked or unknown to some in the field is the significant role of genetic factors. I have been living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since my early childhood, a journey marred by numerous misunderstandings and incorrect diagnoses.

I have written a summary of how I discovered (my) ME/CFS:
https://swaresearch.blogspot.com/2024/01/is-me-cfs-spinal-muscular-atrophy.html

 

[Wishful]

I'm puzzled by their motives for doing so.

I wonder whether students buy into the belief that psychologists are scientists doing credible work leading to effective treatments. By the time they graduate, they're stuck with that career (and hefty student debt), so they continue the bad old ways. Some probably believe their pseudoscientific studies have value. I've met plenty of people who seem to truly believe in (to me) wacky pseudoscientific alternative healing, so a psychologist believing that ME is psychological is easy to believe.

Have any psychologists written papers or books denouncing the worst aspects of psychology? Surely some must see the flaws in the studies and the denial of negative responses to treatments.

 

[Rufous McKinney]

Psychology Today:

https://www.psychologytoday.com/us/...e-psychosomatic-illnesses-a-thing-of-the-past

..."Just because we don’t know the answer doesn’t mean there isn’t an answer. This should go without saying: there’s a lot we don’t understand about the brain. Practicing some humility about this fact and recognizing that what we don’t know doesn’t mean the patient is making it up (or not experiencing “real” physical symptoms) would go a long way..."

 

[Booble]

In turn, these changes might alter patients' tolerance for exertion and their perception of fatigue.

I think there might be something to the idea of "perception of fatigue." I always wonder why when I'm fatigued, I feel like awful shit. But when husband is fatigued, it's not really a thing.
It's not "psychological" in that how he experiences fatigue is so very different. For him it's just being tired. For me it feels ....systemic (?).
Maybe "perception" isn't the best word. Maybe how we "experience" fatigue.
Perception sounds as if we are feeling the same thing but are just being wimpy about it.

 

[wabi-sabi]

Perception sounds as if we are feeling the same thing but are just being wimpy about it.

In healthcare perception has a particular meaning that's slightly different from how lay people use it. Perception is contrasted to reality, meaning it is the opposite of reality. In other words, it's the patient's misunderstanding or misreading or a situation or symptom, rather than the physician's objective and educated view of reality. For example: "Weak Link Between Patient Perception and Reality" https://ryortho.com/breaking/weak-link-between-patient-perception-and-reality/

Yet at the same time there are plenty of articles on the theme of "the patient's perspective is their reality". The implicit message here is that it's the patient's reality, not real reality, which is the physician's. Here's an example of that with patient satisfaction: https://www.sehealthcaresolutions.com/2019/04/16/perception-equals-reality/

The implication when the paper calls fatigue a perception is that our fatigue, while it may be our reality, isn't real reality. Feeling tired in this context is the opposite of truly being tired. It's the same way they think of pain in fibro. You aren't really in pain because there are no objective signs of pain. You are just perceiving pain, that isn't really there.

So quit whining about being tired and in pain already!

 

[Booble]

physician's objective and educated view of reality.

It's too bad those physicians can't live for a few days in our bodies!
I do find it helpful though if a physician confirms you don't have anything majorly wrong with you. That helps to stop focusing on whatever since focusing does make everything worse.

 

[wabi-sabi]

It's too bad those physicians can't live for a few days in our bodies!

I often wonder what would get through to them.

 

[Rufous McKinney]

n that how he experiences fatigue is so very different. For him it's just being tired. For me it feels ....systemic (?).

we are experience multiple chemical poisonings of some kind.

I know exactly what it feels like to hike all day, and be really tired, fatigued and sore. It feels GOOD, Even that sore feels GOOD in a type of way.

That does not happen any longer for me. I was active for years wiht mild ME and I could hike all day, and not be very bothered later. I did not experience classic PEM during my mild era.

 

[Rufous McKinney]

So quit whining about being tired and in pain already!

I wake up with normal feet but by 3-4 pm, my feet are numb.

Thats not a perception issue.

I can observe my own veins swelling up. Creeping up my arm. I can just see it happening. Its not a perception.

My eyes are severely swollen. Pressure. Squeezed. Blurred. Sometimes they are so squeezed, they are just pouring liquid.

Tired is a state that involves more Perceptoins of it. It's being interpreted. The fatigue is real.

We find out the next day just how real that fatigue, from exertion, is.

 

[Rufous McKinney]

I often wonder what would get through to them.

I got considerable traction demonstrating how I have no finger prints. I have shown that to numerous doctors, and they often get real quiet and "contemplative" afterwards.

 

[Booble]

I wake up with normal feet but by 3-4 pm, my feet are numb.

Thats not a perception issue.

I can observe my own veins swelling up. Creeping up my arm. I can just see it happening. Its not a perception.

My eyes are severely swollen. Pressure. Squeezed. Blurred. Sometimes they are so squeezed, they are just pouring liquid.

Tired is a state that involves more Perceptoins of it. It's being interpreted. The fatigue is real.

We find out the next day just how real that fatigue, from exertion, is.

My left eye has been doing that and pouring out liquid.

PS. Hi Roofie!

 

[Rufous McKinney]

My left eye has been doing that and pouring out liquid.

its my right eye, the worst.

My whole right side is far sicker than my left. I have all kinds of RIGHT SIDE symptoms.

(LOL)

P.S. Hi Booble!!

 

[wabi-sabi]

I know exactly what it feels like to hike all day, and be really tired, fatigued and sore. It feels GOOD, Even that sore feels GOOD in a type of way.

I so miss that feeling- the pleasurable satisfaction of a good workout when you know you are getting stronger and fitter.

 

[Wishful]

In healthcare perception has a particular meaning that's slightly different from how lay people use it.

That's an important distinction regarding the terms used in that paper. When I first read it, I was pleased that they accepted that our symptoms are perceived due to abnormalities in how our brains are processing signals. If they're using "perception" as an insult, that's quite different.

What we perceive, or experience, is the result of brain cells triggering in various ways. If there's a hardware problem, those signals will be different, and thus our experience will be different. If, for example, something lowered the threshold for those neurons that process pain signals, then normal levels of signals from pain-sensing nerves will feel like serious pain. You can't simply "think yourself pain-free", because it's a hardware problem. Our brainfog, lethargy, aches and other neurological symptoms are likewise due to the brain cells not working quite right.

I know exactly what it feels like to hike all day, and be really tired, fatigued and sore. It feels GOOD, Even that sore feels GOOD in a type of way.

I've been lucky to be able to enjoy that feeling numerous times in my ME. It does feel GOOD, and it does feel different from ME's "fatigue-like" symptom.

 

[wabi-sabi]

That's an important distinction regarding the terms used in that paper.

Yep. It a variation on the theme of "I understand the symptoms are real..." even though the disease isn't.

 

[Booble]

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

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.

 

[Hope_eternal]

“Perception”? I really don’t get this at all. 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. This is what keeps people stuck in the old mindset and nothing good comes from that. I wish they’d stop with the gaslighting. I “perceive” any research using the word “perceive” to be a bunch of bunk and hope they toss that line of thinking in a fire.

 

[lenora]

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