New Clinical Case Definition for ME/CFS: Fears It Will Be Labeled “Behavioral Health”

[Hip]

[ME/CFS] has some psychological symptoms, sometimes

More than half of ME/CFS patients have psychiatric comorbidity, this study found. Which I guess might not be surprising if you have a viral infection in your brain.

Though psychological / psychiatric does not imply psychogenic.

 

[Vic]

When I say a psychological component it doesn't necessarily mean a comorbidity with anxiety or depression or bipolar disorder, I mean that thoughts can cause an unconscious physical change in your body, which can then alter a variety CFS/ME/FM symptoms. This is why the disorders can look psychological even though they have a definite physical cause.

And I know CFS/FM aren't the same thing, but I think the wide spectrum of common comorbidities and frequent overlap points to them definitely having the same general type of underlying cause. I think aspects like traveling pain and the turning on and off of symptoms with difficult or impossible to identify reason why they turn on and off means there is some kind of mechanism going on in the body that is probably driven by the neuromusculoskeletal system and probably connective tissue. In my experience this has certainly been the case and when I read or listen to other peoples' descriptions of their illnesses it seems to be in the vast majority of others' as well.

 

[user9876]

When I say a psychological component it doesn't necessarily mean a comorbidity with anxiety or depression or bipolar disorder, I mean that thoughts can cause an unconscious physical change in your body, which can then alter a variety CFS/ME/FM symptoms. This is why the disorders can look psychological even though they have a definite physical cause.

.

The phrase psychological component is meaningless in that it could simply refer to an infinite disjunction of any possible psychological issue that can be thought of in respect to a disease and as such could be applied to any disease.

What you mean is that peoples thoughts cause a physical change in their body causing ME/FM symptoms - so say that. I have never seen any mechanistic evidence that would support such a suggestions. So what are the mechanisms or observations that lead you to this belief?

 

[A.B.]

I mean that thoughts can cause an unconscious physical change in your body

Enough with this bullshit. Showing people a stressful video and measuring an increase in cortisol or heart rate doesn't mean that conditions with elevated cortisol or heart rate are caused by stress. This is magical thinking on multiple levels. We need serious, sober, biomedical research.

 

[Vic]

The phrase psychological component is meaningless in that it could simply refer to an infinite disjunction of any possible psychological issue that can be thought of in respect to a disease and as such could be applied to any disease.

Except there is obviously a psychological component to the triggering of CFS/ME symptoms. Just consider how in many of us mental exertion can cause post-exertional malaise. It's not like we have to completely wipe out our thoughts in order to not have post-exertional malaise. There are clearly some types of thoughts, or quantity, that eventually have a physical affect on our bodies. This is just an example.

What you mean is that peoples thoughts cause a physical change in their body causing ME/FM symptoms - so say that. I have never seen any mechanistic evidence that would support such a suggestions. So what are the mechanisms or observations that lead you to this belief?

I'm working on putting my hypothesis and evidence together, but some other examples:

I was able to notice several times when my anxiety popped up, either in response to social stress or sometimes seemingly out of nowhere, but probably caused certain anxious/negative thoughts I was just having, it was directly tied to extreme discomfort in my shoulder and/or chest. Once it was this intense cramping in my trapezius, and another time I felt a weird depressurizing sensation that felt like I was being strangled from my chest up into my neck. This translated into my voice getting weak, being very anxious, dazed and drained.

Plus, we know different kinds of thinking correlate to certain facial expressions and eye movements. It's not a stretch to think this happens within our bodies as well. It's like how people often say they "put their stress in their shoulders." When we're stressed out or in a confrontational situation, our shoulders tense. You see it in cobras and dogs. Here I found a random article on it:

http://www.nytimes.com/1986/09/28/magazine/relieving-stress-mind-over-muscle.html

Enough with this bullshit. Showing people a stressful video and measuring an increase in cortisol or heart rate doesn't mean that conditions with elevated cortisol or heart rate are caused by stress. This is magical thinking on multiple levels. We need serious, sober, biomedical research.

Hah, that's exactly what it means. Are you saying there hasn't been serious, sober, biomedical research? Of course there has. That's all there's been. They've found a whole lot of useless shit.

 

[Hip]

Except there is obviously a psychological component to the triggering of CFS/ME symptoms. Just consider how in many of us mental exertion can cause post-exertional malaise. It's not like we have to completely wipe out our thoughts in order to not have post-exertional malaise. There are clearly some types of thoughts, or quantity, that eventually have a physical affect on our bodies. This is just an example.

I wouldn't say its "some kind of thoughts" that can trigger mental exertion-derived PEM. "Some kind of thoughts" suggests that the subject matter of the thoughts plays a role, which don't think is the case in any ME/CFS patient I have talked to about this issue.

I have had quite a bit of discussion with members of this forum regarding what types of mental exertion triggers PEM, and it seems that many ME/CFS patients find socializing (talking and chatting) with friends is a major cause of PEM derived from mental activity. I get this type of PEM myself, and it in fact significantly limits my social life.

After pondering upon this phenomenon for many years, I finally came up with a theory to try to explain it, which is outlined in this post. Basically, my theory is that mental exertion-derived PEM from socializing is caused by brain arousal.

Arousal is a physiological state in the brain which involves the reticular activating system (RAS). As we get more excited by stimuli (and a good chat or discussion is very mentally stimulating), arousal increases. I suspect that some physiological response connected to arousal (such as the increase in norepinephrine) then drives the PEM.

But you wouldn't call arousal "some kind of thoughts"; arousal is just the level of excited alertness of the brain.

I was able to notice several times when my anxiety popped up, either in response to social stress or sometimes seemingly out of nowhere, but probably caused certain anxious/negative thoughts I was just having, it was directly tied to extreme discomfort in my shoulder and/or chest.

This chicken and egg etiology can be hard to fathom. I had a similar issue when I noticed that as my anxiety levels rose, so would my level of nasal / sinus congestion and inflammation.

From your perspective, you might assume that my rising anxiety was causing this congestion and inflammation.

However, I had a theory that it was the other way around. To test this theory, I starting using topical nasal sprays and treatments that would reduce my nasal / sinus congestion and inflammation. Sure enough, when I did this, I found my anxiety levels dropped also. So this indicated that the nasal / sinus congestion and inflammation was a factor causing my anxiety symptoms, and not the other way around. (Inflammation is increasing being linked to mental conditions such as anxiety, depression, schizophrenia, and so forth, so it is not surprising that sinus inflammation might lead to anxiety).


Psychiatry is brim full of these unproven ideas that anxiety symptoms in the mind can lead to physical symptoms.

For example, anxiety often arises with IBS, and some psychiatric researchers have come to the conclusion that the gut symptoms are a result of the anxiety; ie, they posit that the gut symptoms are psychosomatic, caused by the anxious mental state.

However, IBS often arises from a gut infection, and in this case, the anxiety comes after the IBS has been triggered by the infection, indicating that that anxiety is a consequence of the IBS, and not the other way around.

So if you use a bit of detective work, you can figure out which is primary and which is secondary.

 

[Sean]

I have had quite a bit of discussion with members of this forum regarding what types of mental exertion triggers PEM, and it seems that many ME/CFS patients find socializing (talking and chatting) with friends is a major cause of PEM derived from mental activity. I get this type of PEM myself, and it in fact significantly limits my social life.

After pondering upon this phenomenon for many years, I finally came up with a theory to try to explain it, which is outlined in this post. Basically, my theory is that mental exertion-derived PEM from socializing is caused by brain arousal.

Best I can tell, the human part of our brain is mostly there to manage social interaction and negotiation with other humans. If so, then not surprising that any medical disorder that affects that part of the brain produces exhaustion, often very quickly.

 

[Nielk]

The way I look at it is that I have a certain amount of spoons a day. Spoons meaning measures of energy expansion. Some days I have more than others.

Everything we do uses energy. Eating, getting dressed, reading, talking and thinking.

In a day that I take a shower, I might not have the energy left for a long phone conversation. On that day, the phone conversation would put me over the threshold I to PEM.

Another day when my state is weaker, it could be just eating a small meal that pushes me over the edge.

Concentration, for me, takes up a lot of spoons.

 

[Vic]

I wouldn't say its "some kind of thoughts" that can trigger mental exertion-derived PEM. "Some kind of thoughts" suggests that the subject matter of the thoughts plays a role, which don't think is the case in any ME/CFS patient I have talked to about this issue.

I have had quite a bit of discussion with members of this forum regarding what types of mental exertion triggers PEM, and it seems that many ME/CFS patients find socializing (talking and chatting) with friends is a major cause of PEM derived from mental activity. I get this type of PEM myself, and it in fact significantly limits my social life.

After pondering upon this phenomenon for many years, I finally came up with a theory to try to explain it, which is outlined in this post. Basically, my theory is that mental exertion-derived PEM from socializing is caused by brain arousal.

Arousal is a physiological state in the brain which involves the reticular activating system (RAS). As we get more excited by stimuli (and a good chat or discussion is very mentally stimulating), arousal increases. I suspect that some physiological response connected to arousal (such as the increase in norepinephrine) then drives the PEM.

But you wouldn't call arousal "some kind of thoughts"; arousal is just the level of excited alertness of the brain.

That is actually exactly what I've noticed as well. Many different kinds of excited or aroused states are what trigger my fatigue often. It's also certain emotional states or thoughts. In my experience there are definitely subject matters that do play a role. For instance, I am unable to play or watch video games or porn anymore because once the excitement and tension in my body reaches a certain point, I crash (Also just the light from TV/Comp screens cause neuromuscular excitement, ESPECIALLY LED or artificial lighting, very bad). And because of my unique case of CFS I have been able to pinpoint exactly where in my body the trigger for the fatigue comes from, a muscle tear in my chest. It's not just the tear, though, I actually have a lot of stuff wrong with my body, several injuries, but they have given me big clues.

Long story short, it's not "brain arousal" that causes the crash, it's shifts in the musculoskeletal configuration of your body that reaches an unstable limit and irritates past tissue damage. That then causes the fatiguing cascade. This is how both physical and mental exertion cause PEM.

This chicken and egg etiology can be hard to fathom. I had a similar issue when I noticed that as my anxiety levels rose, so would my level of nasal / sinus congestion and inflammation.

From your perspective, you might assume that my rising anxiety was causing this congestion and inflammation.

However, I had a theory that it was the other way around. To test this theory, I starting using topical nasal sprays and treatments that would reduce my nasal / sinus congestion and inflammation. Sure enough, when I did this, I found my anxiety levels dropped also. So this indicated that the nasal / sinus congestion and inflammation was a factor causing my anxiety symptoms, and not the other way around. (Inflammation is increasing being linked to mental conditions such as anxiety, depression, schizophrenia, and so forth, so it is not surprising that sinus inflammation might lead to anxiety).


Psychiatry is brim full of these unproven ideas that anxiety symptoms in the mind can lead to physical symptoms.

For example, anxiety often arises with IBS, and some psychiatric researchers have come to the conclusion that the gut symptoms are a result of the anxiety; ie, they posit that the gut symptoms are psychosomatic, caused by the anxious mental state.

However, IBS often arises from a gut infection, and in this case, the anxiety comes after the IBS has been triggered by the infection, indicating that that anxiety is a consequence of the IBS, and not the other way around.

So if you use a bit of detective work, you can figure out which is primary and which is secondary.

Basically what I think happens is that stressors like a gut infection cause a pattern of damage within the connective tissue that radiates throughout the body. So Irritable Bowel Syndrome, is characterized by chronic bowel irritability, not just acute cases. The syndrome happens when the irritability continues to occur with no apparent or minor provocation.

Now, an anxious situation and anxiety are actually two different things. The anxiousness or excited arousal that you get from being in a social situation doesn't in itself cause symptoms. Rather, the muscular tension that occurs with such an experience radiates throughout the body, causing shifts, like it's checking parts of your structural integrity. Once it reaches a point of weakness, an old injury or scar tissue, or just general structural instability, that gets irritated, and those irritating/uncomfortable signals travel to your brain. Not only that, but some of your other organs may be affected like your gut, lungs, heart, a damaged SI joint, or maybe sinuses in your case.

This discomfort then becomes registered, subconsciously, by your brain and causes you to tense up more. This snowballs into a continuous cycle. Excited/aroused state - tension - destabilization/irritation - begin anxiety and more excited arousal - more/continued tension - more destabilization/irritaion - more anxiety. On and on until whatever systems can't handle it start to crash and you get so uncomfortable or compromised that you need to remove yourself from the source of excited arousal.

But, if this discomfort happens on its own, even without an apparent provocation, as in your sinus case, then anxiety.

Tada!

 

[Valentijn]

Except there is obviously a psychological component to the triggering of CFS/ME symptoms. Just consider how in many of us mental exertion can cause post-exertional malaise. It's not like we have to completely wipe out our thoughts in order to not have post-exertional malaise. There are clearly some types of thoughts, or quantity, that eventually have a physical affect on our bodies. This is just an example.

I'll try to use small words. Brains use energy, just like muscles. We don't produce enough energy. That's biology, not psychology, even when it happens in the brain.

Hah, that's exactly what it means. Are you saying there hasn't been serious, sober, biomedical research? Of course there has. That's all there's been. They've found a whole lot of useless shit.

Like the two-day CPET, which has been replicated by three independent groups and clearly distinguishes us from deconditioned controls? Or ME patients being thoroughly documented as having types of OI which are not associated with deconditioning? You'd have to be living in cave to miss those.

 

[Vic]

I'll try to use small words. Brains use energy, just like muscles. We don't produce enough energy. That's biology, not psychology, even when it happens in the brain.

Hip and I were just discussing how it's usually excited arousal mental states that cause PEM. Yeah pure energy output is a part of it, but how does using energy in your brain affect your leg muscles?

Like the two-day CPET, which has been replicated by three independent groups and clearly distinguishes us from deconditioned controls? Or ME patients being thoroughly documented as having types of OI which are not associated with deconditioning? You'd have to be living in cave to miss those.

Have they helped in figuring out what causes or how to fix ME? Nope.

 

[A.B.]

I think a reason why one can get systemic symptoms even from just talking is a shift towards anaerobic cellular metabolism. Why we're starved of oxygen is a good question. Or maybe we're starved of some other things needed for aerobic metabolism.

 

[lansbergen]

Yeah pure energy output is a part of it, but how does using energy in your brain affect your leg muscles?.

Oxygen shortness.

 

[Vic]

I think a reason why one can get systemic symptoms even from just talking is a shift towards anaerobic cellular metabolism. Why we're starved of oxygen is a good question. Or maybe we're starved of some other things needed for aerobic metabolism.

Oxygen shortness.

Yeah you guys are right, that's definitely a component. But in my experience, I was able to drastically improve the ease and capacity of my breath in a few months. It did help, but even after maximizing that potential I still had PEM.

 

[lansbergen]

I was able to drastically improve the ease and capacity of my breath in a few months.

I could not, My breathing muscles were to impaired.

 

[Vic]

I could not, My breathing muscles were to impaired.

Then unimpair them. It's not that they're weak, it's that they're restricted.

 

[lansbergen]

Then unimpair them. It's not that they're weak, it's that they're restricted.

Well it was a bit more then that.

 

[Sidereal]

Ah, the good old psychobabble "muscle tightness" canard trotted out to explain every "unexplained" symptom. You see this in every British fatigue clinic manual (aka psychoquack's manifesto).

When rheumatoid arthritis was unexplained by science, there were psychiatrists writing papers in the 1940s/1950s claiming the same mechanism of stressful thoughts ----> muscle tightness ----> joint stiffness/pain symptoms.

 

[Valentijn]

Hip and I were just discussing how it's usually excited arousal mental states that cause PEM. Yeah pure energy output is a part of it, but how does using energy in your brain affect your leg muscles?

It doesn't. My cognitive crashes don't affect my full body. Whereas a crash triggered by using my arms excessively would result in cognitive dysfunction and full body pain, including in the legs.

 

[A.B.]

Fluge and Mella believe that there is endothelial dysfunction. I'm not knowledgeable about that topic but it could be an explanation.