Central Sensitization Syndrome

[Forbin]

The proponents of the CSS model are saying that CFS is caused by CSS.

Yeah, I really don't see how CFS could be caused by sensitization.

On the other hand, I am concerned about the possibility that the years long elevation cytokines levels might lead to some kind of physical change in the nervous system that makes one continue to feel crappy even after the cytokine levels drop.

 

[LornaRaindrops]

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.

I'm a bit late to this as I just found this thread and am new here, but yes. For me my nerve ending pains in my pelvic area (which gave me a diagnoses of vulvadynia) has been going on since I was 18 (I'm 27). The pain is constant, it never goes away and I also suffer all the other symptoms listed with CSS. I just assumed they were to do with the M.E which I got when I was 13 and ones that develop over time. I'm extremely sensitive to smells, bright lights, loud or high pitch sounds, certain foods etc but the nerve pain is the worst. It doesn't ever come in phases, it's always permanent unfortunately. I only found out CSS was a thing last week, whether it's actually true or not I'm not sure, but it makes sense to me in some ways given what I suffer with. But again, with the M.E, everything ends up making sense as nothing seems to be impossible anymore.

 

[halcyon]

Hopefully not a sign of things to come from the NIH.

Walitt B1, Ceko M, Gracely J, Gracely RH.
Author information

• 1National Center for Complementary and Integrative Health, National Institutes of Health 10 Center Drive Bethesda, MD 20814. Brian.walitt@nih.gov.

Oops, maybe it was a sign.

 

[Sidereal]

National Center for Complementary and Integrative Health

 

[Chrisb]

Does "complementary health" mean that the research has no object?

 

[concepcion]

From doctor who uses CSS model for ME: "There is no such thing as “central sensitization disorder” There are central sensitivity syndromes (with an “s”): this is an umbrella term that simply groups conditions that commonly co-occur. For example, over 50% of ME/CFS patients have FM, and over 25% have IBS. Other conditions that commonly co-occur include: POTS (Postural Orthostatic Tachycardia Syndrome), Multiple Chemical Sensitivities, Migraines, Temporomandibular Disorder, Non-Cardiac Chest Pain, and others. In fact, IBS and POTS are part of the diagnostic criteria for ME/CFS. No one yet knows if these other conditions simply represent the idiosyncrasies and variability of ME/CFS and FM. The interesting thing is that when you treat one, the others tend to improve: arguing for some physiologic commonalities. I often see the term Central Sensitization Syndrome used as if it is a condition, when it simply implies the association of a number of conditions with overlapping patho-physiologies: immune, inflammatory, neuroendocrine, altered gut microbiome, abnormal pain processing, etc"

The illness is explained to patients in this CSS framework. No testing done for viral or bacterial infections. No treatments given to those who have done outside testing which reveal active infections.

Any thoughts how to respond to this physician?

 

[Kati]

From doctor who uses CSS model for ME: "There is no such thing as “central sensitization disorder” There are central sensitivity syndromes (with an “s”): this is an umbrella term that simply groups conditions that commonly co-occur. For example, over 50% of ME/CFS patients have FM, and over 25% have IBS. Other conditions that commonly co-occur include: POTS (Postural Orthostatic Tachycardia Syndrome), Multiple Chemical Sensitivities, Migraines, Temporomandibular Disorder, Non-Cardiac Chest Pain, and others. In fact, IBS and POTS are part of the diagnostic criteria for ME/CFS. No one yet knows if these other conditions simply represent the idiosyncrasies and variability of ME/CFS and FM. The interesting thing is that when you treat one, the others tend to improve: arguing for some physiologic commonalities. I often see the term Central Sensitization Syndrome used as if it is a condition, when it simply implies the association of a number of conditions with overlapping patho-physiologies: immune, inflammatory, neuroendocrine, altered gut microbiome, abnormal pain processing, etc"

The illness is explained to patients in this CSS framework. No testing done for viral or bacterial infections. No treatments given to those who have done outside testing which reveal active infections.

Any thoughts how to respond to this physician?

An illustration would be to assemble all patients who have cancer and tell them that what they got is crazy cell syndrome. That there is no need to perform further testing, that it is what it is, and that what they have to offer is to meditate so the cells don't go so crazy. Further they would tell the patients to stop looking further into it.

That's my first response.(there are others in the pipeline)

 

[Valentijn]

Any thoughts how to respond to this physician?

Start quacking at him?

 

[Kati]

Any thoughts how to respond to this physician?

Did the physician test his hypothesis in clinical trial to prove that when he treats the symptoms, the others improve? What is his magic treatment? Have his patients returned to work and enjoying a full life? Are his patients meeting the full criteria for CCC? What is his measure of success? Is the response long lastIng?

Has this physician attended the international conferences and discussed his hypothesis with the real exeprts?

 

[A.B.]

I too would want to know what kind of treatment he proposes and what he is basing the claim that patients are improving on.

 

[concepcion]

New video from the Complex Chronic Diseases Program at BC Women's Hospital in Vancouver, Canada, explaining CSS:

I'm not sure why they don't include all illnesses in which patients have an exaggerated reaction to stumuli as a component. And why group them together based on this element? Why not focus on neuroinflammatory diseases, mitochondrial disorders, etc.?

 

[Valentijn]

I'm not sure why they don't include all illnesses in which patients have an exaggerated reaction to stumuli as a component. And why group them together based on this element? Why not focus on neuroinflammatory diseases, mitochondrial disorders, etc.?

Because the clinic has been co-opted by psychosomatic proponents.

 

[Cheshire]

I'm not sure why they don't include all illnesses in which patients have an exaggerated reaction to stumuli as a component. And why group them together based on this element? Why not focus on neuroinflammatory diseases, mitochondrial disorders, etc.?

I'd like to see a real evidence for lumping all these different disorders together.
Other than "it's a practical theory that explains everything we don't understand and allows us to tell something that looks scientifc to the patients".

Paradoxically, the CCDP, which edited this video, has one video about ME/CFS, called Mitochondria not Hypochondria, where they do not speak about central sensitization at all, but refers to 2 days CPET tests...

 

[Woolie]

OMG, this is incredible pseudoscience! But made by respectable people, so its never questioned!

 

[Kati]

The Central Sensitization theory is present to prevents patients from getting further expensive testing and treatments. There is absolutely no testing needed, other than ruling out some diseases.

Further, it alienates patients from the rest of the health care system. The professionals will know not to pay attention to patients symptoms and refer them for CBT. Because this is what it's all about.

Then this program is calling themselves the absolute experts in the field. Let alone that the main internist there never attends the scientific conferences that matters most. How can they call themselves exeprts when they don't even care for the most severe patients, do not have the capacity to start an IV, and simply rebrand ME, FM, anxiety, and interstitial cystitis as one syndrome called Central Sensitivity Syndrome based on a mere judgement from one doctor?

This programs spends 3 milliosn a year for group therapy and to educate the patients about CSS. Patients need to make a fuss about it. We deserve much much more than this.