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

[Vic]

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.

Can you physically exert yourself after you are mentally exhausted as well as if you weren't mentally exhausted?

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

Yeah that's probably true to an extent, though I'm not exactly sure how it would have worked out in my case. I DID feel a lot of a warm or cool feeling occasionally rushing through parts of my body, but I wasn't sure if that was nervous or vascular related.

 

[Valentijn]

Can you physically exert yourself after you are mentally exhausted as well as if you weren't mentally exhausted?

After a cognitive crash I can still do my usual amount of physical activity.
Though figuring out how to start and complete an activity gets a lot more complicated, unless it's a very routine activity which I do every day.

 

[WillowJ]

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

For some patients, it is indeed that the muscles are weak, and this can be shown with the correct testing.

 

[beaker]

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.

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.

I'd also like to throw in the studies that show low blood flow to the brain.
(sorry too tired to get you the links) Julian stuart just published one recently. There are others.
No blood in the brain means the CNS which controls many of our physiological functions are not going to get the energy/blood they need to function correctly. => PEM

As for the 2 day tests not leading to cause. They fill in part of the picture and create leads. Like to mito dysfunction. and again there that low blood flow thing again. There's more but i'm shot and done. @Vic you seem to have your mind made up. Maybe you have a physc component to your health and that's ok. Not all of use do.

 

[alex3619]

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.

That is the wrong end of the chain. Even isolated muscle tissue, in full oxygenation, is operating like its oxygen deficient in us. The issue is primarily cellular. It may or may not be primarily mitochondrial.

In the history of medicine there is not one proven disease in which thoughts cause the illness. Thoughts can, though, modify the response to illness, which can have symptomatic impact. The illness, however, is typically a brain illness, and the science is trending that way even for depression and PTSD.

There is one and only one kind of clear thought disorder, and I would not want to medicalize it. That is false belief structures, whether they are partially or fully false. This occurs in cults for example, and brainwashing for other reasons. But who decides? Are Christians right, or athiests? Or is it Buddhists or Hindus? How about left wing ideology? Right wing? Centrist? Once you start medicalizing this it becomes socially and politically problematic and even dangerous.

On the other hand there is a long list of disproven thought caused disorders. This starts with tuberculosis, then epilepsy; then both types of diabetes; arthritis; all cancers, and when that was shown to be nonsense, breast cancer; gastric ulcers, lupus, MS, asthma, and many many many more.

Batting average of these theories: zero success, huge failure. Yet still they persist, due to jargon laden rhetoric particularly in psychiatry. This gave rise to the terms nonscience (later pseudoscience) and psychobabble.

My answer is always: where is the reliable objective evidence? Theory is nice, but properly designed large scale studies, with objectively measured outcomes, is necessary.

 

[A.B.]

That is the wrong end of the chain. Even isolated muscle tissue, in full oxygenation, is operating like its oxygen deficient in us. The issue is primarily cellular. It may or may not be primarily mitochondrial.

Which study is that?

 

[alex3619]

Can you physically exert yourself after you are mentally exhausted as well as if you weren't mentally exhausted?

In my case, no. The entire system goes down together. Thoughts also have nothing to do with it. I am typically neither anxious or depressed for example. Its very much like in the definition of SEID for me: any cognitive, emotional or physical exertion causes a systemic failure.

Which leads me to strongly suspect there is a control system issue at work. The control systems are neurological, hormonal or immunological. The current leading theoretical focus is moving to look at immune activation in the lower brain, the limbic system.

 

[alex3619]

Which study is that?

This is Julia Newton's work, and the results so far are mostly presented at seminars and conferences. She is using muscle test beds. Even our isolated muscles are stuffed. She is trying to determine the cause. There is ZERO psychological influence on isolated muscle tissue. What this does not rule out though is prior psychological impact. However this problem appears persistent. How does a psych causation induce persistent muscle change at the physiological level?

One of the things she is trying to do is use various nutritional and drug therapies on isolated muscle to see what alters the function.

 

[user9876]

Except there is obviously a psychological component to the triggering of CFS/ME symptoms.

You misunderstand my point. Saying there is a psychological component is a useless hypothesis because it is so unspecific and there are so many different interpretations that it is meaningless. I've heard doctors use the phrase but on questioning they are unable to articulate what they actually mean. What I find particularly annoying is the word component because that suggests other unstated components and interactions. It seems to me that such statements come from doctors who don't like to be wrong so make general statements that can be twisted to whatever the situation requires. That is not science which I think should have a precision.

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.

This leads to a question as to what mental exertion and thoughts actually are. At a physical level they are the firing on neurons and require the nerve cells to metabolize energy - ok i'm not sure what the actual chemical but I assume it is similar to energy production in other cells (muscles ...). So it doesn't surprise me that mental exertion produces PEM.

I think there may well be other issues in that, for example, stress does produce a physical reaction via hormones and this in itself can have energy usage and other implications.

The question is what is PEM and what causes it. To me it maybe a disruption of a dynamic system within the body but not normally a sudden shock. Perhaps where an initial change in one part of the system leads to feedback and amplification via other parts of a cycle hence the apparent delay. But then the system will gradually settle down or find a different equilibrium with a more permanent relapse. But the question is what would produce such a disruption - it may be for example a bad control loop on a normal reaction to exertion and energy production or it could be a by product of the use of energy. I suspect to really answer the question careful very regular monitoring would need to happen.

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

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.

There are stress reactions and obviously the brain controls the body but that is normal. The question is what suddenly becomes different and why. Thoughts can clearly cause a stress reaction but that will happen in healthy and sick people - so the question is under your hypothesis what is different.

More generally different bits of the brain control different parts of the body or functions some via conscious thoughts and some not and there will be some normal communication mechanisms between them. In pushing your theory you need to show how paths differ with ME. What is it for example that would change that would allow someone to think themselves into OI how would such a mechanism work and is there any evidence for such a mechanism.

 

[Sidereal]

It's no surprise that more "stressful" thoughts - positive or negative emotionally arousing thoughts - would lead to crashing and PEM more so than neutral thoughts or letting your mind wander aimlessly. This can superficially make it seem as though the patient "can't handle stress" and that emotions can somehow cause physical symptoms.

In order to think thoughts your brain requires energy which is in short supply in an ME brain (as in all other neurological and real psychiatric conditions, not made up ones like "pervasive refusal syndrome" but actual conditions). The brain is experiencing an energy failure just as muscles and other organs are. The more energy required for a thought process, the worse the performance typically and the more severe the payback later. The most energetically expensive stuff would be complex higher level brain functions like social cognition (socialising, relationships etc.) and executive functions (planning actions, sequencing, problem solving etc). Letting your mind wander is less taxing on the brain than socialising for an evening or trying to solve a problem that requires sustained attention and executive function.

Stressful thoughts also spike up catecholamines and cortisol resulting in even more energy expenditure there. You need functioning mitochondria to produce hormones and neurotransmitters and then after the stress is over you need energy to be able to break them down/metabolise them so they're not hanging around keeping your heart rate up for ages afterwards etc. In order to metabolise hormones your liver and other organs need energy so that enzymes can work and since the liver is also gimped from low ATP, low glutathione, low NADPH etc., you come across to the doctor as being in a "persistent stress state" and really anxious which can be simply from the effort involved in getting to the appointment. In more severe cases, the mere effort of lying in bed and existing causes catastrophic energy failure and all its attendant symptoms.

 

[lansbergen]

@Sidereal,. You are a good teacher.

 

[A.B.]

Intense intellectual work (solving a programming problem) gives me qualitatively different fatigue than socializing. The former is pure brain fatigue, the latter is more generalized. Socializing involves many different body parts and senses if one thinks about it. I'm pretty sure heart rate increases too, at least in the situation I'm thinking of where I was happy to see an old friend I hadn't seen in a while. I know some people think heart rate is a good predictor for PEM and they might be right. I haven't looked much into this.

I can think of an unpleasant situation too where I had to talk to other people about a problem that was stressing everyone out. It took about the same time for the fatigue to arrive than in the pleasant situation, and it wasn't any stronger. I think this is really just about metabolism.

I would describe myself as poorly tolerating stress, bu that is a different layer than the fatigue that comes from exertion. I felt unwell during a synacthen test which stresses the adrenals.

 

[Hip]

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.

How were you able to demonstrate that your fatigue symptoms come from a muscle tear in your chest?

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.

It's quite possible that a chronic infection in the body might cause connective tissue alterations, due to the fact that, in order to fight infections, the immune system often secretes connective tissue-degrading enzymes such as neutrophil elastase and many matrix metalloproteinase (MMP) enzymes such as MMP-9. These enzymes can damage and degrade the components of connective tissue (components such as elastin, collagen, gelatin).

However, I am not aware of any link between damaged connective tissue per se and mental symptoms. Although some of MMP enzymes are neurotoxic (MMP-1, MMP-2 and MMP-9 are neurotoxic), so the enzymatic process of connective tissue damage could affect the brain. In fact, many connective tissue disorders do also manifest neurological and mental symptoms, which might conceivably be explained in part by these neurotoxic MMPs.

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.

What empirical evidence would you have to support this idea? In other words, what research indicates injury or scar tissue can cause anxiety?

In particular, what is the evidence that muscular tension around scar tissue sends signals to the brain? What is the mechanism of signaling (ie, which nerves, hormones, cytokines, etc signal to the brain), and finally, how would this signal when received cause an anxiety state in the brain?

The main areas of the brain known to be linked to anxiety are the amygdala, hypothalamus, prefrontal cortex and locus coeruleus.

 

[Hip]

@Vic
In terms of structural asymmetries in the body leading to symptoms such as fatigue and anxiety, I should mention the posts by Dr Amir (which start with this post). Dr Amir has found that by rectifying asymmetries in the jaw and atlas bone, he has cured or put into remission cases of ME/CFS-like illnesses. It's not entirely clear though whether these cases were true ME/CFS, as defined by say the CCC or CDC criteria, or whether they were just some ill-defined fatiguing illnesses.