Central Sensitization Syndrome

[beaker]

It does not requires science in order to diagnose this. All you need is pain and a collection of symptoms showing ssensitivity. With that, you are all set for CBT and GET. Further, all future symptoms you may report will be explained by CSS and does not warrant investigation.

See the slippery slope?

I'm sorry this is happening Kati. I am putting much hope in the recent surge of interest in MEcfs w US researchers. Right now any decent scientist/dr would see through this. Hang in there.
And I also have much hope in the increase in advocacy and cooperation to fight for PWME

 

[Hip]

I personally believe that the rebranding of diseases to CSS is to prevent the expenses to costly testing (for socialized health care system) (or for your private insurance company) and prevent further research.

Would you have any links to Canadian health service websites where they say that ME/CFS is a CSS disease, and explain that CBT / GET are the appropriate treatments for CSS. I'd just like to see how they are spinning it.

 

[beaker]

Thanks @Asa and @Hip , I was wondering where the theory stemmed from.

A quick wikipedia browse shows the following:

The changes of central sensitization occur after repeated trials to pain. Research from animals has consistently shown that when a trial is repeatedly exposed to a painful stimulus, the animal’s pain threshold will change and result in a stronger pain response.
.

not sure I did all cut paste correct.
But I wanted to point out that for myself and many other PWME that I know is it is just opposite. I have becomes so used to pain that my tolerance level has increased. Pain that would send someone to er is just my every day.

 

[Hip]

I'd like to get a better understanding of how Muhammad Yunus sees the central sensitivity syndrome concept he created.

In this paper, Yunus says:

Such terms as "medically unexplained symptoms," "somatization," "somatization disorder," and "functional somatic syndromes" in the context of CSS should be abandoned.

Given current scientific knowledge, the concept of disease-illness dualism has no rational basis and impedes proper patient-physician communication, resulting in poor patient care.

The concept of CSS is likely to promote research, education, and proper patient management.

But in this paper Yunus says:

The biology of CSS is based on neuroendocrine aberrations, including CS, that interact with psychosocial factors to cause a number of symptoms.

CONCLUSIONS:
CSS is an important new concept that embraces the biopsychosocial model of disease.

So Yunus wants to abandon the labels MUS, somatization and functional disorder, replacing them with CSS, which has a clear physiological basis.

However, it seems he does not want to entirely abandon the idea that psychosocial factors play some sort of role in the etiology of CSS.

Note that the term psychosocial = one's psychological development / interaction with the social environment (ie, one's family, relationships, and the society we live in).

That he includes the psychosocial is rather unfortunate, because that then opens the doors to a whole lot of pseudoscientific psychobabble about how these CSS diseases might arise.

 

[Snow Leopard]

@Hip

I'll be convinced when the science has been demonstrated and the treatment approaches are different. Until then, I'll remain skeptical.

 

[Effi]

That he includes the psychosocial is rather unfortunate, because that then opens the doors to a whole lot of pseudoscientific psychobabble about how these CSS diseases might arise.

I think that's the tricky part of this kind of theories: they say illness is both physical and psychological, but then go on focusing only on the psychological part (blame the patient). If that doesn't work, they focus on the social aspects (blame the family of the patient). Cause heavens forbid they'd focus on the physical, which in the case of ME is so complicated everyone will end up blaming... THE DOCTOR. And we can't have that, now can we?

 

[jimells]

So Yunus wants to abandon the labels MUS, somatization and functional disorder, replacing them with CSS, which has a clear physiological basis.

It's called "marketing".

 

[Hip]

I think that's the tricky part of this kind of theories: they say illness is both physical and psychological, but then go on focusing only on the psychological part (blame the patient). If that doesn't work, they focus on the social aspects (blame the family of the patient).

Exactly.

You get all this sort of overt nonsense from so called medical professionals as soon as you leave the door open to some psychological influence on a neurological disease. Nonsense like blaming the family for the disease, or blaming the patient for allowing his state of mind to somehow create the disease.

These medical professionals that believe this mumbo-jumbo are still living in the dark ages.


Now, I am prepared to accept that factors such as psychological stress might conceivably play a role in disease etiology (but for physiological reasons, such as the fact that stress may increase viral reactivation). However, stress is a relatively clearcut concept.

Whereas psychologists that hold somatoform views on disease think that your beliefs and values can cause illness, which is really a form of mumbo-jumbo magical thinking rather than science. And this is why they then start blaming the patient, and the blaming the family for the disease, because they have these magical thinking ideas that mere belief can create a disease.

So in practice, it is better not to leave the door open to psychological / psychosocial factors in your theory of a neurological disease, because in practice, when you do leave the door open (as Yunus unfortunately did with CSS), the psycho-quacks come out of the woodwork.

 

[Kati]

Exactly.

You get all this sort of overt nonsense from so called medical professionals as soon as you leave the door open to some psychological influence on a neurological disease. Nonsense like blaming the family for the disease, or blaming the patient for allowing his state of mind to somehow create the disease.

These medical professionals that believe this nonsense are still living in the dark ages.


Now, I am prepared to accept that factors such as psychological stress might conceivably play a role in disease etiology (but for physiological reasons, such as the fact that stress may increase viral reactivation). However, stress is a relatively clearcut concept.

Whereas psychologists that hold somatoform views on disease think that your beliefs and values can cause illness, which is really a form of mumbo-jumbo magical thinking rather than science. And this is why they then start blaming the patient, and the blaming the family for the disease, because they have these magical thinking ideas that mere belief can create a disease.

So in practice, it is better not to leave the door open to psychological / psychosocial factors in your theory of a neurological disease, because in practice, when you do leave the door open (as Yunus unfortunately did with CSS), the psycho-quacks come out of the woodwork.

Here they talk about perpetuating factors, one of which is deconditionning.

And guess what CBT & GET are treatments, and both of whichand recommended without the help of the UK BPS lobby.

 

[Snow Leopard]

So in practice, it is better not to leave the door open to psychological / psychosocial factors in your theory of a neurological disease, because in practice, when you do leave the door open (as Yunus unfortunately did with CSS), the psycho-quacks come out of the woodwork.

It is fine to 'leave the door open', but they have to provide direct evidence that it is relevant, not the rampant speculation we have seen all too often. The problem with open minds is they fill up with shit...

 

[L'engle]

Would you have any links to Canadian health service websites where they say that ME/CFS is a CSS disease, and explain that CBT / GET are the appropriate treatments for CSS. I'd just like to see how they are spinning it.

I suspect right now it is more a provincial matter in BC rather than federal/Canadian. The provinces can be quite separate about these things. Can't really say more without getting off topic into politics.

 

[A.B.]

The "BPS model" is just a label to defend against the accusation of ignoring physical aspects, which they happily continue to do.

 

[Hip]

There seems to be a hierarchy of models here:

The BPS model is employed as the causal framework for CSS, and then in turn, CSS is used as the causal framework to explain ME/CFS, fibromyalgia, IBS, interstitial cystitis, and similar diseases currently classified as functional.

If we could just snip off the BPS front end to this hierarchy, thus cutting out the potential for mumbo-jumbo psychological theories that the BPS model provides, it would be much better. Then we would just have CSS as a purely physical concept, which potentially might provide insight or explanation into functional diseases.

Although even if CSS can explain some symptoms of functional diseases, my guess (like others here) is that it will likely not explain all the symptoms.

 

[Snowdrop]

Because this new/developing approach to ME provides a biological mechanism it will make it harder to refute the CBT/GET treatment
that has been so entrenched without any evidence previously necessary. The BPS group were backed into a corner where they could at best (even in their own scenario) claim that CBT/GET helped manage or cope with illness and was the best treatment.

Now with CSS they can hope to gain ground in the claim of effective symptom treatment again. My own opinion is that CSS may well have some small part to play in the overall illness but that CBT will most certainly not benefit me any more than it hasn't so far.

After all, we could argue that if we were experiencing pain and had already been offer CBT as treatment because of our ME diagnosis then any CSS (if thats what they want to rebrand the illness as) would/should have been amenable to treatment already offered.

I have no idea how to go about engaging the BPS community in a way that shows the error in their thinking. I am now at the point of hoping with all my diminished strength that someone will come up with a robust biomarker soon that suggests some real treatment options for us all. That to me seems the only way out of this: CBT works because we say it does and it saves us money situation we find ourselves stuck with.

 

[Hip]

Now with CSS they can hope to gain ground in the claim of effective symptom treatment again.

I see what you are saying. Though I would think the psychologists still need to prove that CBT/GET helps these functional diseases. I am guessing that if and when the PACE trial data gets released, people will realize that PCE was a swizz, and that CBT/GET does very little for ME/CFS.

 

[Snow Leopard]

In "central sensitization," nociceptive neurons in thedorsal horns of the spinal cord become sensitized by peripheral tissue damage or inflammation. This type of sensitization has been suggested as a possible causal mechanism for chronic pain conditions. The changes of central sensitization occur after repeated trials to pain. Research from animals has consistently shown that when a trial is repeatedly exposed to a painful stimulus, the animal’s pain threshold will change and result in a stronger pain response.

Has anyone ever demonstrated a chronic sensitisation effect? It seems the research shows an acute sensitisation effect that lasts a few days-weeks at most. Any 'parallels' are hypothetical at the moment.

 

[Effi]

Has anyone ever demonstrated a chronic sensitisation effect?

I think in their minds it needs the same amount of proof as 'psychosomatic illness': none. I say it exists, therefore it exists. According to their 'logic', if psychosomatic response exists (i.e. stomach ache before an exam), that in and of itself is proof that it can somehow magically turn into a lifelong chronic illness state.

 

[lansbergen]

Central sensitization does not fit my improvement experience. It is at least partly perifere.

Furthermore, how can it be central when ME pain and injury pain feel different and respond different to painkillers?

 

[jimells]

I was shocked at being able to hear the neighbour snoring, opening the drawer in his bedside table, and taking a bath, for example. The sounds of splashing, and of his butt squeaking against the bottom of the bathtub, felt particularly intrusive; not to mention the "stream" hitting the water in his toilet bowl!

How awful! I sure am glad I no longer have neighbors living six inches away from me. I don't think I could take it.

 

[Hip]

I think in their minds it needs the same amount of proof as 'psychosomatic illness': none.

Depends who you are referring to. The biopsychosocial / somatoform researchers don't bother looking for proof or testing their theories scientifically.

All the biopsychosocial researchers need to propose a theory is a nice financial reward for their consultancy work for disability insurance companies. Most of these biopsychosocial / somatoform researchers have links to the insurance industry.

However, the people studying central sensitivity syndrome (CSS) are a different group; if you search through PubMed for papers on central sensitization, you find that the vast majority of researchers of CSS work in neurology, not psychology.



It is important for ME/CFS patients to be accurate in their criticism of researchers, which they are often not. For example, many ME/CFS patients inaccurately say that ME/CFS is not a psychological/mental disease, which is completely wrong. Of course ME/CFS is a psychological disease! Half the symptoms of ME/CFS are mental.

More accurately, what ME/CFS patients should say is that ME/CFS is not a psychologically-caused disease. That is completely different. That is saying that ME/CFS has mental symptoms, sure, but those symptoms are caused neurologically, not psychologically.



I don't think we should be criticizing central sensitivity syndrome too much, because this may well lead to better understanding of ME/CFS. What we should be criticizing is the way the BPS school has hijacked CSS.