Central Sensitization Syndrome

[Snow Leopard]

I am just wondering if this is really such a bad thing, given the circumstances.

After all, at least central sensitization is a proposed physical basis for diseases like ME/CFS and IBS, which is a vast improvement on somatization, which posits that ME/CFS, IBS, etc is caused by psychological issues — psychological issues that somehow mysteriously transform into physical symptoms.

Given a choice of the two, I'd much rather my doctor describe ME/CFS as a central sensitization syndrome than a somatization process.

I hate to break it to you, but "central sensitisation" is just a rebranding of somatization. The treatment approaches are exactly the same.

Also note that ME or CFS are not chronic pain conditions and I'm willing to bet lots of money they have different underlying mechanisms. The parts of the brain that are activated in pain conditions are not activated in ME or CFS.

 

[Hip]

Looks like Goldstein and Yunus also published a paper together in 1993:

Goldstein JA, Mena I, Yunus MB. Regional cerebral blood flow by SPECT in chronic fatigue syndrome with and without fibromyalgia syndrome. Arthr Rheum. 1993;39(9) Suppl.:205.

 

[Gingergrrl]

@Hip I am sure I missed this part by not watching the whole video but who is Yunus? Sorry if this is a stupid question!

ETA: I know you mentioned him in this thread but he is someone well-known prior to this thread?

 

[Hip]

I hate to break it to you, but "central sensitisation" is just a rebranding of somatization. The treatment approaches are exactly the same.

Would you have any references to the treatment approaches?

I just glanced through this paper on the treatment of pain from central sensitization conditions, and the treatments mentioned are all pharmaceutical: gabapentin, pregabalin, duloxetine, ketamine.


My concern with central sensitivity syndrome would be that if it is grounded in the biopsychosocial model (which includes psychological factors), irrespective of how doctors actually treat CSS diseases, insurance companies may still refuse disability payments, because they can claim there is a psychological component.

who is Yunus?

I'd never heard of him either, but when I was Googling to try to find out who originated CSS, I discovered that Prof Muhammad Yunus of the University of Illinois introduced the concept of central sensitivity syndrome to describe what is happening myriad diseases such as ME/CFS, IBS, etc. He proposed that in all these conditions, the central nervous system has an exaggerated, over-amplified response to sensory stimuli.

 

[Gingergrrl]

I'd never heard of him either, but when I was Googling to try to find out who originated CSS, I discovered that Prof Muhammad Yunus of the University of Illinois introduced the concept of central sensitivity syndrome to describe what is happening myriad diseases such as ME/CFS, IBS, etc. He proposed that in all these conditions, the central nervous system has an exaggerated, over-amplified response to sensory stimuli.

Thanks and I was just curious since I had not heard of him before. I wonder why his theories are gaining traction now? Is he promoting this theory to Mayo Clinic and in Canada or he is unrelated?

 

[Hip]

The mechanism that causes this is the fight, flight, freeze survival response. This mechanism requires that our senses be up-regulated to the highest degree for obvious reasons.

That is one possible explanation, but it seems that there are a number of proposed mechanisms that it is thought might cause central sensitization. I am rather partial to the neuroinflammation explanation of how central sensitization might arise.

Thanks and I was just curious since I had not heard of him before. I wonder why his theories are gaining traction now? Is he promoting this theory to Mayo Clinic and in Canada or he is unrelated?

Not sure. It often takes a while for new concepts in medical research to reach doctors and clinical practice, so maybe Professor Yunus's ideas are just slowly taking root now.

Here is an article about Muhammad Yunus and his career in fibromyalgia research:

Yunus saw his last patient in 2010. He's still teaching and doing research on a part-time basis. He's proud to have devoted his career to studying a disease most doctors dismissed.

"These women were suffering so much, and everybody thought it was all in their heads," said Yunus. "For fibromyalgia to be accepted by the medical community — so much so that now we have three FDA approved drugs — that was once unthinkable."

Yunus' research laid the groundwork for the next generation of researchers, many of whom are already working on better understanding of abnormalities in the brain and spinal cord.

"The research has to revolve around the central nervous system, and tease out all the complex components in the nervous system, which we know very little about right now," said Yunus.

The proliferation of fibromyalgia studies gives Yunus great satisfaction. He knows that greater understanding will lead to improved treatment.

"Now I can retire with peace — a younger generation can carry the torch."

 

[Snow Leopard]

I just glanced through this paper on the treatment of pain from central sensitization conditions, and the treatments mentioned are all pharmaceutical: gabapentin, pregabalin, duloxetine, ketamine.

Medications for psychiatric conditions and pain? Looks like the same-old to me.

 

[adreno]

I agree what several others have said; that the CSS model will not be used as a starting point for further exploring the genetic and environmental factors behind the syndrome, but only as a rebranding of MUS.

 

[Gingergrrl]

Sorry, what is MUS?

 

[Groggy Doggy]

The thing that bothers me most is that diseases which have fda approved treatments do not get labelled as CSS. For instance rheumatologic diseases. Sure enough, fibromyalgia is co-morbid with many rheum conditions. RA, lupus, Sjogren's. Do these patients get the label of CSS? I auggest 'not as likely'. These patients are offered treatments.

@Kati I think that ultimately scientifically based medical research (not psycho babble research) will ultimately shut down some of these '"false diagnosis beliefs" and remove some of the dreaded DSM codes which prevent patients from getting the proper diagnosis and treatment they deserve. It wasn't that long ago the psych industry:

thought homosexuality was a mental illness
for 2 decades thought a lobotomy was a viable procedure

And after someone figured out the lobotomy procedures had issues, then the psych industry and big pharm began pushing psych meds. And there has been push back by some that we have been overprescribed psych meds (ex: because depression and anxiety could really be a gut-brain microbiome issue)
So what's next up the sleeve from the psych industry? As of 2015, there is talk about bringing back mental institutions (asylums)

In conclusion, nothing about the psych industry surprises me anyone. The 'dark side' of the psych industry, is the one thing I agree with Scientology about.

http://www.independent.co.uk/news/s...ch-really-is-just-psycho-babble-10474646.html
https://en.wikipedia.org/wiki/Lobotomy
http://www.sciencedirect.com/science/article/pii/S0166223613000088
http://www.theatlantic.com/health/a...the-us-bring-back-psychiatric-asylums/384838/

 

[Kati]

I hate to break it to you, but "central sensitisation" is just a rebranding of somatization. The treatment approaches are exactly the same.

Also note that ME or CFS are not chronic pain conditions and I'm willing to bet lots of money they have different underlying mechanisms. The parts of the brain that are activated in pain conditions are not activated in ME or CFS.

Thanks for getting it, @Snow Leopard

 

[TiredSam]

Sorry, what is MUS?

Medically Unexplained Symptoms. An acronym that's being used to maximise the number of patient populations that psychobabblers can abuse.

 

[Hip]

I agree what several others have said; that the CSS model will not be used as a starting point for further exploring the genetic and environmental factors behind the syndrome, but only as a rebranding of MUS.

In practice, due to laziness and lack of research funding, that might turn out to be the case.

But the originator of CSS, Muhammad Yunus, found it awful that fibromyalgia was considered to be an "all in the mind" condition, and is very pleased that there are now FDA approved drugs to treat fibromyalgia, and that fibromyalgia is now taken more seriously (see article above). So it does not look like he devised CSS so that people can say these diseases are "all in the mind"; rather the opposite.

 

[Groggy Doggy]

In practice, due to laziness and lack of research funding, that might turn out to be the case.

But the originator of CSS, Muhammad Yunus, found it awful that fibromyalgia was considered to be an "all in the mind" condition, and is very pleased that there are now FDA approved drugs to treat fibromyalgia, and that fibromyalgia is now taken more seriously (see article above). So it does not look like he devised CSS so that people can say these diseases are "all in the mind"; rather the opposite.

@Hip

Of the 3 FDA drugs mentioned to treat Fibromyalgia, 1 is an antidepressant, and 1 acts like an antidepressant. To me, 2/3 treatments are "all in the mind"

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm107802.htm

 

[Hip]

Of the 3 FDA drugs mentioned to treat Fibromyalgia, 1 is an antidepressant, and 1 acts like an antidepressant. To me, 2/3 treatments are "all in the mind"

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm107802.htm

The three FDA-approved drugs in question, pregabalin, duloxetine and milnacipran, all reduce central sensitization. Ref: 1

These drugs all act on the brain, but central sensitization is indeed "all in the brain" and central nervous system.

 

[Kati]

In practice, due to laziness and lack of research funding, that might turn out to be the case.

But the originator of CSS, Muhammad Yunus, found it awful that fibromyalgia was considered to be an "all in the mind" condition, and is very pleased that there are now FDA approved drugs to treat fibromyalgia, and that fibromyalgia is now taken more seriously (see article above). So it does not look like he devised CSS so that people can say these diseases are "all in the mind"; rather the opposite.

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. And in fact this very thing was specified in a specialist consultation of mine. That people like me should not have further testing, therefore reinforcing I had a physical illness.

And to further the CSS research field, do not expect serial mri scan to see if the target treatment works. No. They will carry on doing the questionnaires, to see if your mood is improving, if you can walk further, if your pain is better after a 3 months of weekly group therapy and exercise. They will research the coping and the adherence to treatment.

 

[Snow Leopard]

The three FDA-approved drugs in question, pregabalin, duloxetine and milnacipran, all reduce central sensitization.

We don't know that they "Reduce central sensitisation". We know that they have positive psychiatric effects (on mood or other symptoms) and this leads to a change in how people rate their level of pain on self-report questionnaires.

The rest is just speculation.

 

[Groggy Doggy]

The three FDA-approved drugs in question, pregabalin, duloxetine and milnacipran, all reduce central sensitization. Ref: 1

These drugs all act on the brain, but central sensitization is indeed "all in the brain" and central nervous system.

@Hip

I am going to agree that we disagree on this subject matter of using psych meds to treat Fibromyalgia. Per your profile, I am glad you are having success with Amisulpride which Wikipedia says is " atypical antipsychotic used to treat psychosis in schizophrenia and episodes of mania in bipolar disorder"

https://en.wikipedia.org/wiki/Amisulpride

 

[Valentijn]

Don't know what to tell you. Patients currently gets diagnosed with this in BC. Our options are
1) don't access care
2) get out of country care
3) fight back by providing evidence, but it may not be considered because we are mere patients and they are the gods.

How do you provide evidence that something (CSS) doesn't exist? It's incumbent upon them to prove the model, but they haven't and they aren't even trying. It's no different from saying that ME symptoms are due to deconditioning ... or negative energy or quantum mechanics.

It's a few quacks waving their hands around while using impressive terminology. You can't fight it because there is nothing of substance to fight. What needs to be fought is the establishments which allow such bullshit to occur in their clinics. And a good way to do that can be by embarrassing them by calling them out about the blatant quackery they are selling.

THEY need to prove that their model has value. Until then, it's completely ridiculous to pretend it's real and use it as a treatment model. And if they're using it as a treatment model without any evidence, they're quacks, just like all the other quacks with their different quack treatments based on vague hypotheses which they never attempt to prove or disprove.

 

[Gingergrrl]

@Valentijn How does Mayo Clinic get away with all their nonsense and this far pre-dates CSS. Do you think certain institutions just have so much prestige that literally anything they endorse is given credibility?

It seems to be the total opposite of the situation in Canada b/c if Mayo is using this model, they must have something to back it up (I am not defending them in any way, it is despicable) I am just saying that legally they must have something to back it up.

Is there a way to find out what it is and that info could help Kati and others?