Diagnosing CFS/ME not Black and White

[Kati]

Thank you @Hip. Here is an example of the misuse of CSS- where every symptoms including pots is being supposedly explained by 'the brain freaking out'

http://thischangedmypractice.com/hope-for-patients-with-fatigue-pain-and-unexplained-symptoms/

This is unhelpful and used to prevent specialized testing and treatments for ME and the myriad of diseases which otherwise are unexplained (and apparently menstrual cramps are in that box)

Unfortunately this theory disregards association with autoantibodies including adrenergic and muscarinic receptors, and disregards current metabolomic science which includes changes at mitochondrial level. The beauty of css theory is that no tests are needed. Patients simply need CBT, group therapy and a whole lot of education about how to live with this (relaxation, meditation, exercise, and what not)

 

[Hip]

http://thischangedmypractice.com/hope-for-patients-with-fatigue-pain-and-unexplained-symptoms/

This is unhelpful and used to prevent specialized testing and treatments for ME and the myriad of diseases which otherwise are unexplained (and apparently menstrual cramps are in that box)

It does sound like just another way for a doctor to just label some symptoms, so as to give an impression that they are medically understood, and thereby get the patient out of their office without providing any help or further testing.

The doctor in that article says:

I have found the concept of Central Sensitivity Syndromes (CSS) helpful in explaining CFS and FM to patients
...
For patients, the main idea is that their brain is perceiving amplified or incorrectly interpreted information. Many identify with the commonly associated light, noise, and food or chemical sensitivity.

That may be something the patient can identify with, but it seems like a bit of a handwaving argument, in that these light, noise, food and chemical sensitivities are probably all caused by different mechanisms — mechanisms that may be unrelated to the proposed signal amplification of central sensitization.

For example, this study found that noise/sound sensitivity was associated with sensory gating deficits, and I don't think these have any relation to central sensitization or signal amplification. Sensory gating is more an issue in the brain's "firewall", to use a computer analogy.

So sound sensitivity is probably completely unrelated to central sensitization, in terms of mechanism.



As an area of research, though, I'd like to see more studies, provided that the disability insurance industry don't start perverting the course of science yet again, and exert their considerable influence to make central sensitization into biopsychosocial condition, in which psychogenic factors get touted as playing a role, so that insurance companies can avoid providing disability payouts. If they can keep central sensitization away from being tainted with psychogenic pseudoscience, then it may be fruitful.

 

[cmt12]

This means that that subconscious brain has an increased sensitivity to the person's environment or any stimuli (external or internal) that find their way into the processing centers of the brain. The brain processes and "interprets" this information and then creates a response. Pain for some, fatigue for others, nausea/reflex, weird sensations, cognitive issues/brain fog, sweating, temperature intolerance, anxiety, weakness, balance issues/dizzyness and more. Ultimately these "symptoms" are warning bells going off to alert your conscious brain of an "interpreted threat".

It goes even deeper than this. The subconscious (mind) actually contains embodied memories of "trauma" that are snapshots of fear responses that are passed on hereditarily. For instance, a child is already afraid of snakes before knowing what a snake even is or having a conceptualization of that category of animal.

When these embodied memories -- which include muscle tension, sympathetic nervous system activity, loss of higher brain functioning, etc -- become too many that they overflow, then you get chronic conditions like ME/CFS and the others you listed.

The subconscious mind isn't confined to the brain even though it uses it; the entire human body is bound within the SM.

 

[Kati]

It does sound like just another way for a doctor to just label some symptoms, so as to give an impression that they are medically understood, and thereby get the patient out of their office without providing any help or further testing.

The doctor in that article says:

That may be something the patient can identify with, but it seems like a bit of a handwaving argument, in that these light, noise, food and chemical sensitivities are probably all caused by different mechanisms — mechanisms that may be unrelated to the proposed signal amplification of central sensitization.

For example, this study found that noise/sound sensitivity was associated with sensory gating deficits, and I don't think these have any relation to central sensitization or signal amplification. Sensory gating is more an issue in the brain's "firewall", to use a computer analogy.

So sound sensitivity is probably completely unrelated to central sensitization.



As an area of research, though, I'd like to see more studies, provided that the disability insurance industry don't start perverting the course of science yet again, and exert their considerable influence to make central sensitization into biopsychosocial condition, in which psychogenic factors get touted as playing a role, so that insurance companies can avoid providing disability payouts. If they can keep central sensitization away from being tainted with psychogenic pseudoscience, then it may be fruitful.

On one side you have doctors quite happy with the CSS theory, and making a living out of prescribing CBT to patients. On the other side, you have Jarred Younger who is trying to understand what exactly is happening in the brain of patients and is actually testing his theories. And you have researchers like Michael VanElzakker who is also researching his vagus nerve infection theory. I say be part of the solution, not perpetuating the problems. FIght for the truth, and aim at making a real difference in people's lives, and prescribing CBT is not it.

It is simply not acceptable for physicians to simply sit there and tell patients ' it's your brain freaking out'.

 

[Snowdrop]

Another lovely example of a little knowledge being a dangerous thing. Large grand pronouncements that don't need to be validated by examining the hypothesis. Always from someone who has a disposition toward a preconceived paradigm for how all these things work that will not be shaken no matter the evidence.

If all the people who make grand pronouncements got seriously ill with ME we wouldn't need to deal with this.

 

[Hip]

This well-written overview article on central sensitization provides a good summary of the condition. In particular, it says:

Central sensitization has two main characteristics. Both involve a heightened sensitivity to pain and the sensation of touch. They are called ‘allodynia’ and ‘hyperalgesia.’

Allodynia occurs when a person experiences pain with things that are normally not painful. For example, chronic pain patients often experience pain even with things as simple as touch or massage. In such cases, the sensation of touch travels, of course, through the nervous system. Because the nervous system is in a persistent state of heightened reactivity, the sensation is registered in the brain as painful or uncomfortable even when it really shouldn’t, given that the sensation itself was that of a simple touch or massage.

Hyperalgesia occurs when an actual painful stimulus is perceived as more painful than it should. An example might be when a simple bump, which ordinarily might be mildly painful, sends the chronic pain patient through the roof with pain. Again, the sensation of pain travels through the nervous system, which is in a persistent state of high reactivity, and the pain is registered in the brain as a heightened level of pain.

HealthRising article on allodynia:
When Touch Hurts: An Allodynia Overview


Also of interest:

it has long been known that strokes and spinal cord injuries can cause central sensitization. It stands to reason. Strokes and spinal cord injuries cause damage to the central nervous system – the brain, in the case of strokes, and spinal cord, in the case of spinal cord injuries. These injuries alter the parts of the nervous system that are directly involved in central sensitization.

 

[chipmunk1]

The idea of a subconscious brain is nonsense. Of course we are not aware of most brain activity but that doesn't mean that it is governed by emotions and personality.

Emotions and thoughts can influence certain bodily functions, heartbeat for example but that doesn't mean that they regulate them.

If you were to think the wrong thought or emotion your heart might stop beating if your heartbeat would depend on your mental state. Obviously our brain is not that flawed.

Bodily processes are not run by your personality... Personality is just a part of your brain function but not the one that is in charge of running your body or immune system.

At least it has never been shown to be true and it doesn't make any sense.

Some in the psych field have desperately tried to prove that mind > body, in cancer for example but have never been able to show more than a vague relation between physical and mental factors. Not one single reliable cure has ever been produced.

the body will always try to maximise the odds of survival instead playing games and risking your life because of whatever unresolved personal conflict you might have.

Central sensitization as a psychologic problem is an idea. Even when the brain appears to be react differently than in a healthy person we don't know what that means. Perhaps it is the result of a (physical) disease process that is not understood.

There is no reason to believe that CBT can train neurons. Your brain cells can not be programmed with talk therapy. Fortunately. If they could we would see many people being screwed up or even killed by psychobabblers.

 

[chipmunk1]

In fact the latest research is placing CFS/ME, Chronic Pain, Fibromyalgia, Non-epileptic seizure disorders, "Psuedo-stroke", hemiplegic migraines, RSD, Migraines in general and others yet to be clearly defined under the umbrella of centrally sensitized disorders.

you assume that the scientific literature will always reflect current scientific knowledge. If you look at the history of medical research you will see that a lot reflects current fads and fashions, preferences, biases, etc.

In medicine there has always been a need to label poorly understood syndromes with a single diagnosis that somehow implies the psyche or the mind are to blame.

why? If you are a doctor you will see these cases every day and there is nothing you can do.

You are expected to diagnose and treat but you can't. The solution? Label them hysterics and send them home.

Conversion disorder, somatic depression, hysteria etc.

None of the former theories(oedipus complex, refrigerator mothers, repressed memories) turned out to be correct.

Many of these disorders turned out to be different unrelated physical illnesses. The only thing they had in common was that they were not understood.

I do not believe we can say that migraine and CFS/ME are the same thing. These are two different problems.

The only thing that these illnesses have in common is that they are not well understood.

This is not medical science it is medical politics. Provide a simple solution for problems that can not be solved.

 

[Mohawk1995]

It is simply not acceptable for physicians to simply sit there and tell patients ' it's your brain freaking out'.

You are completely correct in saying that it is not acceptable for any medical provider to "sit there and tell patients 'it's your brain freaking out'" even if in fact that is the case. If a physician is not willing to roll their sleeves up and really work hard to help their patients, then they should be ashamed. Having spent countless hours working one on one with patients I learned that it takes time and effort to truly help people. I actually happen to believe our brain's freak out especially when they go into protective mode, but it is not honest neuroscience to think that we can somehow control it with just thoughts. That would completely underestimate the power that it has and also assume that the brain is just conscious thought or even predominantly conscious thought when the neuroscience says otherwise (only 10-20% conscious). CBT is actually a very weak tool in impacting the subconscious or autonomic brain. In fact so are a myriad of tools including most medications, interventional procedures, surgical interventions and "positive thinking".

Also by saying central sensitization or neuro-plastic changes are occurring does not mean that you have just defined every disorder in detail. There are cause and effect phenomenon at play, but there is also much more to address. I think it is fascinating what both sides of this "argument" have come to. I am one to think that even in the case where I disagree with someone, there still most likely is an element of something I agree with.

This again, goes to why I titled the thread that Diagnosing is not Black and White.

 

[Valentijn]

You are completely correct in saying that it is not acceptable for any medical provider to "sit there and tell patients 'it's your brain freaking out'" even if in fact that is the case.

So the doctor or therapist should lie to avoid upsetting the patient?

 

[Mohawk1995]

No the emphasis is on just "sitting there and telling the patient". Anyone who is suffering deserves more than passively referring them for a treatment that is not very effective, they deserve all we can bring to the table and exhaust every resource including our own time to do so.

 

[Hip]

The idea of a subconscious brain is nonsense. Of course we are not aware of most brain activity but that doesn't mean that it is governed by emotions and personality.

The idea that beliefs in the mind might be the general cause of ME/CFS is pretty untenable, and clearly, ME/CFS needs to be researched biomedically.

But ME/CFS aside, I don't think you can deny the existence of unconscious processes in the brain, nor that emotions and personality are involved. To demonstrate the existence of unconscious processes, I can give you an amusing story about how a class of psychology students, who when they first learnt of the unconscious, played a trick on their lecturer, setting up a scheme to manipulate and control his behavior in a way he was unconscious of, because the manipulation was performed at the unconscious level.


There is nothing particularly mysterious about the unconscious mind: an analogy would be a company or business organization: if we think of the board of directors as the conscious mind, and the rest of the employees as the unconscious mind, then any action the employees take without the awareness of the board is an unconscious action.

Most large companies have too much going on for the board to be aware of everything, so most actions and behaviors that the company engages in are dealt with at the level of the employees alone (ie, unconsciously). That is to say, the responsibility for actions and decisions is delegated to the employees for most run of the mill tasks. However, if some important event or occurrence happens, then the employees may rouse the attention of the board, in which case, in our analogy, the company is now consciously aware of that event.

All of us who drive a car have experienced that: most driving is performed unconsciously; but now and then something happens one the road, and because of potential danger or difficulty, your full conscious attention is roused in order to assess and deal with that situation.


I find these subjects very interesting; but to reiterate: the idea some learned behavior, conscious or unconscious, could be the cause of ME/CFS is untenable.

 

[Mohawk1995]

To be clear I am not advocating that Central Sensitization causes ME/CFS. I am merely stating that it occurs in ME/CFS and being that our brain/nervous system always monitors, regulates, reacts to, provides feedback and creates changes in our body as a whole. It is always doing this in the Non-conscious part of the brain. I think the problem most people are having with my point of view is because they are coming at it from the basis that the cognitive or conscious part of the brain is the dominant part of the brain. Most of the research I know of and most of the experts I listen to all estimate the non-conscious part of the brain somewhere between 80-90% of its resources.

So you have a structure that contains 100 billion neurons each having 4-5 synapses or connections to other neurons AND 10 x 100 billion glial (glue) cells that also make connections with neurons and connect neurons to other neurons. So quadrillions of connections with infinite variability. 80-90% dedicated to things we never have to think about. And yes as great as our conscious thought is, it only uses 10-20% of the brains resources. So I do believe there are many mysteries to the brain as a whole and the vast majority of the are in the non-conscious functions of it.

So our thoughts do matter, but I do not advocate that they create ME/CFS. It is the interaction between the other functions of the brain with our bodies and how diseases and disorders arise that I find most fascinating.

 

[cmt12]

All of us who drive a car have experienced that: most driving is performed unconsciously; but now and then something happens one the road, and because of potential danger or difficulty, your full conscious attention is roused in order to assess and deal with that situation.

Also, anyone who has practiced mindfulness and observed their thoughts realizes that at least some of their thoughts are unconscious. You really can't have any credible opinions about psychology if you deny the unconscious.

I actually happen to believe our brain's freak out especially when they go into protective mode, but it is not honest neuroscience to think that we can somehow control it with just thoughts.

Yeah, if our subconscious was not much more powerful than our conscious, then we wouldn't have survived as a species. Imagine if our fight or flight response was more of a background suggestion and we had to consciously decide whether we should accept the suggested action when we are facing an imminent threat to our survival.

Now, that doesn't mean that the conscious is powerless to the subconscious. The key is to make the subconscious conscious (making the unknown known) but understanding how to do that and doing it is extremely difficult. You're not going to learn how to do that by studying psychology in the universities and definitely not by filling out CBT questionnaires. But it also won't happen if you exclusively rely on science to guide you.

 

[Hip]

So you have a structure that contains 100 billion neurons each having 4-5 synapses or connections to other neurons AND 10 x 100 billion glial (glue) cells that also make connections with neurons and connect neurons to other neurons. So quadrillions of connections with infinite variability. 80-90% dedicated to things we never have to think about.

These sort of "oh wow" descriptions of the brain are fine for teaching young children about biology, but I can't see that they have much relevance to discussing ME/CFS etiology. No scientist would talk in these terms, unless he was addressing school children.

You said elsewhere that you favor a holistic approach; in my experience, people that say that usually mean: "it's all too difficult and complex for me, so I am giving up studying it". And then these people go on to provide some broad and vague descriptions of body function, as you are doing.

That's an easy way out: it saves an awful lot of hard work in learning about the enormous range of biological pathways that exist in the body and brain, and saves the all the painstaking effort it requires to pin down which pathways may be at fault in any given disease.

The biomedical researchers that are dedicated to uncovering and understanding the pathways that may be at fault in ME/CFS are doing all the hard work.

Whereas the Wessely school psychologists have figured out that you can avoid doing honest hard work if you just spin a yarn about some vague notions of psychological influence, and make an easy career out of such waffle.

 

[daisybell]

@Mohawk1995 i think you need to step back and reflect on how much of your so-called evidence based thinking is actually just your beliefs - which largely seem to be based on dodgy evidence and a large dose of mumbo-jumbo.
Sorry if that seems rude but you can't go making statements like 'central sensitisation exists in CFS/ME' when there is actually no solid evidence for this.

So much of the research into brain function that is trendy at the moment seems to be built on a house of cards in my opinion - functional MRI being one example. Show that one area of the brain lights up when you do a task or think about something. Then show that something else happens when someone who is sick does it... What does that actually tell you? These sorts of experiments are used to claim all sorts of things - like pathological or even positive adaptation, prior trauma or life-stress ect. But these are leaps of interpretation - not truths. Cause or consequence? Relevant or not relevant? Depends what the researcher believes or wants to prove...

One person's hypothesis becomes 'fact' once it's quoted by enough other research. But it's not. Your 'facts' seem to me to be built on very shaky foundations.

 

[Mohawk1995]

If you are not wow'd by the complexity of the nervous system then you may as well not read any of my posts. The reason I throw those figures out is to communicate clearly in a way that anyone can understand. I do not feel it would be beneficial to discuss the biomolecular neurophysiology of ion channels, the complex make up of Neuro-inflamatory agents such as Cytokines, microglia and astrocytes and the impact that adrenaline, dopamine, norepinephrine and oxytocin may play in ME or any other disorder.

My intent is not to provide all of the information to plug up every hole that anyone can shoot in any approach. It is to provide a framework from within to work. There is structure and order to the human body and there are patterns of behavior in both "normal" physiology and "abnormal" physiology that are common to everyone but not always the same in everyone. Unless complex explanations can describe their link to these physiological behaviors they lack validity no matter how many times they are researched.

I would respectfully disagree with you statement that biomedical researchers are performing all of the hard work. I would say those who are stepping into the fray to treat ME patients are doing a lot of hard work. Some misguided but under the best of intentions, others pushing the boundaries of what is accepted practice and others yet performing the clinical research (not laboratory) needed to come up with solutions.

Lastly I would make a clear separation from the pseudo-holistic approach that you mention and a true holistic approach (again another phrase that has been used inappropriately) that considers the pathophysiology of all and any system in the body and at the same time treats the person as a complex individual who demands the respect to help them in all aspects of their life as are possible.

 

[daisybell]

@Mohawk1995 - you make a grave error in assuming that any people here do not possess at least as medical knowledge as you. I am also a health professional - and I specialised in treating neurological disorders for the 16 years that I worked full time.
However, I have learned far far more in terms of critical thinking in my time on this forum than I ever did doing either of my two degrees or during my work.

Please do not patronise us.

 

[Mohawk1995]

Daisybell,

I am not here to spread mumbo jumbo as you have noted. I am here to share my opinion on what I have learned, experienced and seen. You act from a belief that there is some research out there that can clearly define such complex systems when in fact there is not. If there were, we would have a cure for all kinds of diseases and we don't. In fact, the vast majority of diseases and disorders have no cure and/or they have to run their natural course and their is certainly no cure for the aging process.

You are certainly correct in that most studies are shaky at best and not just the ones that "appear" to support CS or Neuro-plasticity. My question is where are the studies that do support effective treatment? I would respectfully request that you not bring up that there aren't any because there is no funding. While I completely agree that funding for ME is very poor, that doesn't mean that if funding is provided a cure will automatically be found.

We fought for our son against Insurance companies who used the lack of research to justify not paying for medications and treatment, doctors who believed that behavioral therapy and graded exercise were the answer and physicians who claimed that Dr Lerner was a quack and that it was dangerous to take our child to him for treatment. We were certainly fortunate to be able to see him (he was 82 years old bless his soul), but it was not without a great deal of resistance and struggle to do so. So although I whole-heartedly believe that CS plays a role, I do not expect anyone else to have the same opinion. I would only like people to consider what I am really saying, not what their own personal biases and beliefs lead them to believe about what I am saying.

I will close by saying there is only one source of truth in my opinion, but that is a topic for philosophy not here.

 

[Mohawk1995]

My intent is not to patronize Daisybell. I am well aware that there are many people on this board that are more intelligent than I and can speak to this topic in ways I could never imagine. I do find in my medical experience and in the years of reading research and listening to people who are suffering that we often make things so complex that little progress is made in helping people who are truly suffering.

I figured someone would take that out of the context it was given. I know what I know, but I am vastly inferior to many people and definitely to the amount of knowledge that still is undiscovered in medicine.