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Ashley

TMS for OCD - Your views for NICE

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NICE are carrying out a project on the procedure 'Transcranial magnetic stimulation for obsessive-compulsive disorder'.  They are looking at how well the procedure is working and if it is safe enough to be used more widely in the NHS in the future.

They have asked the charity for our views, and it's important our views reflect our users views.  So two questions they want us to reflect on and which I am keen to open up to our service-users.

  • What do you think the advantages of the procedure or operation are?      
  • What do you  think the disadvantages of the procedure or operation are?

NICE Description of the procedure
In this procedure, a device containing an electromagnet is placed over the top of the head. This produces pulses of electromagnetic energy that stimulate specific areas in the brain (transcranial). Treatment is a daily session of about 30 minutes for a few weeks. The aim is to reduce the obsessive-compulsive thoughts and behaviours.

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My view. 

The part highlighted in red very much reflects a lack of misunderstanding about how we overcome OCD IMO and I am cynically sceptical about why someone at NICE is trying to push TMS.

 

          

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I have no view as the scientific evidence for this approach is not indicated. NICE would base it’s approval for further research on published evidence. I clicked on the red and it did not take me there. What is the existing evidence in exploratory studies?

Edited by Angst

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18 minutes ago, Angst said:

NICE would base it’s approval for further research on published evidence.

You would like to think so, but that's why this review is very strange.  They are looking at this, despite earlier in the year acknowledging the research was inconclusive, due to mixed findings.  

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Wow you read my mind, was just about to post for advice? If it’s worth persuing TMS? Is it only for severe severe ocd? 

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9 minutes ago, Petal said:

Is it only for severe severe ocd? 

I am not sure it's for mild OCD or severe OCD, that's the problem Petal, the evidence is inconclusive and debatable.

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8 hours ago, Ashley said:

What do you  think the disadvantages of the procedure or operation are?

Well the procedure implies that OCD is a problem of the brain, which hasn't been shown nor does it help the fight against stigma.

I think it will offer a lot of false hope to vulnerable people.

I imagine it has little to no specificity and therefore I'd want proof that if it reduced OCD thoughts, that it then didn't reduce normal thoughts.

I also think it undermines the CBT message that thoughts are irrelevant and OCD type thoughts are common in everyone even those without OCD and therefore don't need reduced.

It reduces behaviours doesn't even make sense. 

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8 hours ago, Ashley said:

What do you think the advantages of the procedure or operation are?  

Without evidence that it works, none. 

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What do you think the advantages of the procedure or operation are?      

Giving the brain a jump start may change the pattern of electrical signalling, in doing so changing the thought patterns the impulses translate to.  Like getting a cardioversion done on your heart to correct an arrhythmia. 

What do you  think the disadvantages of the procedure or operation are?

What if it triggers epilepsy 

 

Surely though they would need to have done way more trials to inform them on its safety/efficacy? It seems like it’s too soon to be pushing this treatment, particularly from a respected institution such as NICE. Seems very Americanised 😕

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If there were more studies behind it and conclusive indicators that it’s more help than hindrance, then truthfully I would definitely sign up for it. 

But what if it produces a different outcome with people who are neurodivergent, like people who are Autistic? There needs to be more data analysis behind this decision

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Caveat:  Non-UK citizen who is not directly affected by NICE guidelines so consider that for what its worth

9 hours ago, Ashley said:

What do you think the advantages of the procedure or operation are?  

While the evidence in its favor is still limited, specifically in treating OCD, TMS has at least been approved for treatment in other areas such as depression (for example its offered by the renowned Mayo Clinic here in the US for depression), and there is some evidence to suggest it can be beneficial to OCD sufferers.  It is non-invasive, and generally time limited (daily sessions for a few weeks).  This would be beneficial compared to more long term treatments such as medication.
 

9 hours ago, Ashley said:

What do you  think the disadvantages of the procedure or operation are?

There is potential for side effects, some of them (seizures, etc.) possibly severe.  Also, it may not be as effective for OCD.
Additionally there is the risk that sufferers may see this as a miracle cure and get false hope, any positioning of this as a treatment should be done with the utmost care to set expectations.

 

Overall there is at least some evidence to suggest it may be beneficial, and as long as the patient is well informed of the risks and potential benefits, it seems like it might be worth exploring, especially for individuals who are struggling with more conventional treatment approaches.  In general I prefer evidence based approaches and the more evidence the better, however I also think its important to recognize that people are suffering now, and sometimes waiting for overwhelming evidence comes at the cost of their continued struggle.  I think CBT (with or without medication) should continue to be the primary treatment offered for OCD, but if there is the possibility for additional methods to be offered in a responsible fashion that can also offer additional benefits that those should strongly be considered as well. 

 

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It’s still experimental as they target various brain regions looking for effect. It’s also expensive at $15,000. Still, it’s great if it works for some. 

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I think any treatments which physically target the brain are misunderstanding the nature of OCD.  The evidence doesn't support the idea that OCD is a physical problem in the brain - everything we have suggests it is a behavioural/cognitive problem (which consequentially creates changes and pathways in the brain which may explain physical brain differences between sufferers and non-sufferers).  The only physical aspect is potentially a genetic predisposition towards anxiety.

Therefore IMO treatments such as TMS (or even meds) are only ever at best going to help with symptom management.  CBT is the only thing that really works because it gets to the behavioural and cognitive underpinnings of OCD. 

 

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22 hours ago, Angst said:

Hi dksea Could you refer us to the evidence?

Here is a link to a semi-recent (2015) meta-analysis of various TMS research that demonstrates its effectiveness.  Further TMS, as a treatment for at least major depression, has met the FDA (American agency responsible for regulation and approval of medical treatments) thresholds for use and is approved for coverage by insurance providers.  So as a bare minimum we have evidence that it can work for treatment of at least some mental health disorders.  Given the similarity in treatment for depression and OCD (CBT, SSRIs, etc.) it is therefore not unreasonable from this evidence alone to consider its use in treating OCD, though of course the exact details might (and do, different areas targeted) differ.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492646/



Meanwhile here is a recent (2018) article that discusses the state of TMS research for OCD so far, the potential opportunities, current limitations, and recommendations for moving forward.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6047114/

Of note, early results for TMS for depression were also mixed, but as the methodology was refined and improved results solidified to the point where it achieved approval.  It may be that TMS for OCD is at a similar point, early researching is promising though not consistent enough for widespread acceptance, however further study and refinement will likely lead to better results. 

I do not know the threshold of results required for NICE approval nor what other considerations they would make, but for me, personally, I'm excited to see continued research in this promising area.  I am fortunate that therapy and medication have been highly effective for me, but for those whom are still really struggling, if this offers them the opportunity to lead better lives with minimal/no side effects, I think offering it as a possible option would be the humane thing to do.

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22 hours ago, gingerbreadgirl said:

I think any treatments which physically target the brain are misunderstanding the nature of OCD.  The evidence doesn't support the idea that OCD is a physical problem in the brain - everything we have suggests it is a behavioural/cognitive problem (which consequentially creates changes and pathways in the brain which may explain physical brain differences between sufferers and non-sufferers).  The only physical aspect is potentially a genetic predisposition towards anxiety.

Therefore IMO treatments such as TMS (or even meds) are only ever at best going to help with symptom management.  CBT is the only thing that really works because it gets to the behavioural and cognitive underpinnings of OCD. 

 

This is simply not true, there is significant evidence that it is the differences in brain function and structure in sufferers that leads to OCD, not the other way around.  The idea that it is a learned behavior problem does not at all align with the often sudden onset of symptoms in sufferers, the fact that it does not effect their cognition in all areas, nor the strong genetic correlation.  

Further CBT is not the only thing that "really works".  Medication based treatment shows the same efficacy rate as CBT alone, and when combined they are more effective than either separately.  

Meanwhile speaking from personal experience, medication doesn't simply manage my symptoms, it allows my brain to function as it did before I had OCD.  I have observed this myself and those who knew me before and after the onset of my OCD and subsequent treatment using medication have noted it as well.  My OCD onset was sudden, it did not happen slowly over time, which is how a learned behavior would be.  I  was not a worrier, far from it.  I did not apply faulty cognition and THEN have OCD, it was upon the onset of OCD that my normal, healthy cognition stopped being enough.  I KNEW that what I was worrying about was logically ridiculous, I KNEW that it made no sense to think that every time I had a sensation in my stomach that it mean I was going to throw up. I KNEW that I could feel hungry or nervous or any other number of things and that would cause these sensations.  Even knowing all that, even having all the right cognition, it didn't stop the anxiety.  I had to learn a non-normal way of thinking about my OCD worries, I had to treat them differently than how I would otherwise.

If OCD were a problem of learned behavior and faulty cognition, then learning how to think "normally" would work.  Applying normal cognitive processes would be the solution.  Worried you might have cancer?  Well apply logic, what are the odds that you do and what are the odds that you don't.  Thats all you'd need to do, thats what a "normal" person does to stop worrying.  They evaluate the risk and they feel fine and move on.  An OCD sufferer doesn't suffer because they can't apply these same cognitive processes, they suffer because those cognitive processes don't work right for them in some situations.  CBT for OCD doesn't teach you how to think like a non-OCD person does, we can already DO that.  it teaches us how to think differently about our problems, to take. non-standard approach, to work AROUND the underlying brain malfunction.  CBT is a mental detour, its a way of getting around the problem, not of undoing the problem.  We are lucky that the brain is flexible enough to work that way, but its little different than a stroke victim who learns to talk again.  They aren't fixing the damage, they are working around the damage.  The same with OCD, we are working around our faulty brain wiring, not undoing it.  if fixing faulty cognition/behavior was all there was to OCD, then it could be cured for each and every person, all you would need to do is change the learned behavior.

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The articles were interesting, thanks for sharing dksea :)

Both articles declared interesting conflicts of interest so I'd like to see them scrutinised further by people with less interest in TMS being successful. The conflicts of interest do not mean that the articles aren't of any value but it's unlikely that someone acting on grant money from the business involved in promoting TMS will publish negative results. 

I found the article on TMS for OCD very interesting. They have admitted that they don't know how TMS works so they are unsure what effects it could have. It could increase symptoms if not administered to the right area. They also aren't sure if in OCD it should be at rest or when being stimulated with a trigger because they see that the brain does different things while doing different tasks. They also think that they may need to fully model an individual's physiology in order to produce good results, which may increase costs.

On the whole I think they need to have a long hard look at what TMS is actually DOING before suggesting using it on anybody with any condition. 

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On 13/09/2019 at 04:22, dksea said:

This is simply not true, there is significant evidence that it is the differences in brain function and structure in sufferers that leads to OCD, not the other way around.  

Where is this evidence and how has it come about? Have they brain scanned people before they got OCD? I can't say I have ever heard any evidence for OCD being a brain fault. 

Also, the argument why it can't be a learned behaviour is not logical. Learned behaviour is highly complex and OCD is a problem of responding to feelings, so naturally logic doesn't work. If OCD sufferers have a brain fault, it would be more likely it would affect other thinking, yet it doesn't. It is also strange how OCD affects particularly problems for particular people. New parents for example worrying about harming their child. How can it be argued that their brain randomly broke at the point of birth. Just doesn't make any sense. 

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11 hours ago, Gemma7 said:

Where is this evidence and how has it come about? Have they brain scanned people before they got OCD? I can't say I have ever heard any evidence for OCD being a brain fault. 

Scanning the brains before and after a person exhibited OCD symptoms would only demonstrate an acquired brain fault.  If the underlying fault was always there you wouldn't see a difference, and you wouldn't know to scan someone susceptible to OCD before they exhibited OCD behavior anyway.  Similar to how a person can be at higher genetic risk for say Alzheimer's yet not develop the condition.  The risk isn't the only component, but its often a necessary one.

Numerous studies have been performed which have identified physiological differences in the brain's structure in people with OCD vs. those without.  The behavioralist argument is that these changes are a result of learned OCD behaviors, which may be possible, but its also entirely possible (and I would argue more likely) that the structural differences (and associated neurological differences) are the underlying cause.  At the very least the existence of physiological differences is definitely evidence that the brain COULD be at fault.  Further studies have been performed (such as a 2017 study out of Cambridge authored by Dr. Annemieke M. Apergis-Schoute et. al.) introducing patients to new stimuli and recording neural responses.  OCD sufferers respond differently even to new sources of possible distress, unrelated at all to their specific intrusive thoughts.  This would suggest an underlying vulnerability since they would not have had time to develop such responses to that stimuli over time.
 

11 hours ago, Gemma7 said:

Also, the argument why it can't be a learned behaviour is not logical. Learned behaviour is highly complex and OCD is a problem of responding to feelings, so naturally logic doesn't work.

Logic is used to respond to feelings all the time.  People can unlearn behaviors by applying logical thinking.  If OCD were a purely learned behavior then, again, it should be relatively easy to cure, not just manage, but cure.  You should be able to unlearn the behavior and never have it bother you again.  Yet even with ERP and CBT relapses are common.  If there is an underlying biological/physiological vulnerability that makes sense, even with modified behavior the fault is still there, it can still misfire, it can still affect you.  If its learned behavior and you unlearn it, that should be the end of it.
 

11 hours ago, Gemma7 said:

If OCD sufferers have a brain fault, it would be more likely it would affect other thinking, yet it doesn't. It is also strange how OCD affects particularly problems for particular people. New parents for example worrying about harming their child. How can it be argued that their brain randomly broke at the point of birth. Just doesn't make any sense. 

Well OCD thinking does often affect other thinking, peoples fears can and do change over time.  The fact that it doesn't effect all modes of thinking further supports a biological flaw, and argues against a purely behavioral one.  if OCD is a behavioral problem related to a specific trigger, then its just a phobia, and once you treat a specific phobia thats it, it doesn't spread to other areas.  But we know OCD is not limited to one trigger per person, it can change focus over time.  So if its broadly behavioral and not specific to one trigger AND its a learned behavior, then it should affect ALL thinking, its the pattern you have learned to apply in all situations right?  If its not if you only apply it selectively then why?  What is the learning?  What is the connection?  Why did I fear throwing up, being gay, self harm and having a heart attack over various points in my life?  Why did overcoming one problem not eliminate the problem for all other areas (including ones that didn't occur until well after I'd stopped worrying about my initial OCD fear?).

But if there is an underlying biological flaw, again, it makes perfect sense.  If that flaw were complete, then yes, absolutely it should affect all thinking, but what if its not a complete flaw?  We see this all the time in mechanical or electronic systems, a flaw that is periodic, or partial.  Maybe its a door that jams some of the time but not always. Why?  Because environment conditions affect whether or not the flaw is exposed/significant enough to trigger.  Wood contracts or expands based on heat.  If the door isn't designed well, during the summer when the heat causes the wood to slightly expand it becomes jammed.  it doesn't jam 100% of the time, but the underlying flaw is always there.  Likewise an OCD sufferers brain is affected by things like stress, lack of sleep, diet, etc.  It makes sense that these (and other factors) could increase or decrease the likelihood of ones OCD triggering, and thats exactly what we see in real patients.  

And yes, sometimes a persons fear is directly related to a significant event or incident in their life, but again, the biological flaw model perfectly explains this.  You are more likely to see an OCD "spike" around something you worry about more often, its just probability.  If you brain malfunctions 2% of the time, you are MORE likely to have it malfunction when you are worrying about something 50% of the time than the thing you only worry about 5% of the time.  In fact, I'd argue that the ability for OCD to clamp on to random, seemingly minor worries, further promotes its case, compared to learned behaviors.  If OCD is a factor of learned behavior, then it shouldn't pop up for minor things, only major ones.  Minor worries you aren't spending much time on, therefore you are less likely to learn an incorrect behavior related to it, where as major issues, the issues you are going to be spending more time thinking and worrying about, would present the most fertile ground for these mislearned behaviors to present.  But an underlying physiological cause can strike at any time.  Yes, as I mentioned above its more likely to strike something you are worrying about often, but it can still strike during a relatively minor thought, its all just a matter of bad timing.  This somewhat unpredictable nature fits the biological flaw model more than the learned behavior model.  Even more so when you consider that OCD has at least some degree of genetic connection to it, that it tends to occur more frequently in related individual, even individuals raised in very different environments.

None of which is to say that OCD is purely biological.  I absolutely believe that behavior is a part of the problem, the flaw is merely the catalyst that sets us up to engage in compulsions and the like.  CBT works because neuroplasticity allows us to work AROUND the underlying biological flaw. m We can compensate for it much the same way a person who has a stroke can learn to speak again using a different part of their brain.  We do have to learn new behaviors, but only because of that underlying flaw, that underlying vulnerability.  

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However, to get back to the matter at hand, whether or not OCD is exclusively a learned behavior or a result of some underlying physiological flaw, the end result is a person who is suffering.  If something can be done to help relieve that person of their suffering (without making them or others suffer in another way) I believe it is worthy of consideration.  Again it is important that it be done in a responsible and ethical fashion, that patients be fully aware of the actual potential for benefit and any side effects, their likelihood and severity.  Decisions should be made in the patients best interests first and foremost.  And while CBT and medication should remain the primary approach, unfortunately for any number of reasons they are not always effective in treating all sufferers.  I'd rather see them have an additional option to potentially help them than wait indefinitely for exhaustive proof.  I think the burden of suffering vs potential benefit is high enough to warrant consideration.  But thats just my opinion.

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The discussion about OCD being nurture vs nature is an interesting one (although a slight diversion from this topic).  DKSea you raise some interesting points - thank you - although I'm not sure I am convinced by your argument.  For example you say here:

On 13/09/2019 at 04:22, dksea said:

This is simply not true, there is significant evidence that it is the differences in brain function and structure in sufferers that leads to OCD, not the other way around.  

but then you say:

10 hours ago, dksea said:

The behavioralist argument is that these changes are a result of learned OCD behaviors, which may be possible 

I think this is where the jury is out, there really is no evidence that the brain differences exist first.  Your main argument appears to be that if it was a learned behaviour then it could be treated easily - but this simply isn't the case for other learned behaviours such as addiction. Learned behaviours do have very real and sometimes irreversible physical changes in the brain. 

You also say the sudden onset is evidence for it being a brain fault but I'm not sure I agree.  I think if anything it suggests it is not an underlying brain fault as why would it only strike on a specific occasion maybe years into a person's life? My view is that OCD is an exaggeration of a potential human tendency in almost everyone, and it develops under the right conditions.  Much as PTSD develops under the right conditions.  

You say that CBT only works around the underlying brain fault but this doesn't explain why plenty of people recover completely.

Also, my OCD has significantly waxed and waned - I have had periods of no OCD - why would this occur if I still have an underlying brain fault?

I think it can sometimes be tempting to want to attribute it to a brain fault as the alternative can feel a bit like we're saying it's the sufferer's fault.  But that couldn't be further from the truth.  The human brain is extremely complex and human behaviour is extremely complex and it is my belief that anybody could develop OCD if the conditions were right (I accept that is just an opinion though).  

Edited by gingerbreadgirl

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The submission was made last week, thank you for all your comments. Happy for the this thread to continue off subject, and thank you for showing each other such respect in how you're doing that.

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18 hours ago, gingerbreadgirl said:

I think this is where the jury is out, there really is no evidence that the brain differences exist first.

I will readily admit that there is not yet conclusive proof the brain differences exist first, that it remains a possibility (though I believe an unlikely one) that the differences are the result of not the cause of our behavior.  However I will go back to your original assertion:

On 12/09/2019 at 13:17, gingerbreadgirl said:

The evidence doesn't support the idea that OCD is a physical problem in the brain - everything we have suggests it is a behavioural/cognitive problem

Again I must say this is simply not the case.  There is ample evidence to support the idea that OCD is physical problem and its not at all true that everything we have suggests its a behavioral problem. Were that the case there would be little to no disagreement over the issue.  Yet not only in our own community but in the scientific community at large this debate rages on.
 

18 hours ago, gingerbreadgirl said:

Your main argument appears to be that if it was a learned behaviour then it could be treated easily - but this simply isn't the case for other learned behaviours such as addiction.

That is one of my main arguments yes, that modifying behavior should be far simpler than if there is an underlying physiological difference.  Its also interesting that you bring up addiction as increasingly addiction is being treated not simply as a behavioral problem but also one in which a sufferer posses an underlying physiological condition which represents a vulernability.  Alcoholism for example is no longer treated simply as a behavioral disorder but as a disease.  It, like OCD has been found to run in families, suggesting a genetic component.  In fact in both alcoholism and OCD twin studies have been conducted with the results supporting this genetic component.  Identical twins demonstrate a far higher rate of concordance (i.e. both twins exhibiting the problem, either alcoholism or OCD) at higher rates than non-identical twins.  If there was not a genetic component, an underlying physiological flaw, then we should not see these results, there should be no difference between identical and non-identical twins.  

It is true that OCD is not 100% genetic, if it were twins would develop it with 100% concordance.  But that's part of your next question so lets get to that:

18 hours ago, gingerbreadgirl said:

You also say the sudden onset is evidence for it being a brain fault but I'm not sure I agree.  I think if anything it suggests it is not an underlying brain fault as why would it only strike on a specific occasion maybe years into a person's life? My view is that OCD is an exaggeration of a potential human tendency in almost everyone, and it develops under the right conditions.  Much as PTSD develops under the right conditions.  

The reason OCD (like other conditions) can strike at some points rather than others, go dormant, etc. absolutely fits with the brain fault model.  As you mention later in your comment, the human mind is complex, and whatever flaw it is that I (and others) believe causes OCD is obviously not sufficient on its own to guarantee the condition develops.  Its not, say the same as type-1 diabetes, where if you have it you have it, it doesn't come and go.  I find a lot of similarities between OCD and asthma (which I also have).  Asthma is a condition that can trigger both in known situations and unexpected ones.  It can flare up unexpectedly and develop later in life.  Yet no one would suggest asthma is a learned behavior.  Even though doctors are still not sure exactly WHY certain people experience asthma and others don't, everyone agrees that it means there is something (or some combination of things) wrong with the body.  The OCD vulnerability is similarly just that, a vulnerability, rather than a complete breakdown.  Its not that the brain is broken 100% of the time, its that the brain CAN break down and malfunction at least some of the time in a way that manifests as OCD.  Just like environmental and biological factors can influence whether or not I'll have an asthma reaction, environmental and biological factors can influence my susceptibility to OCD.  Our minds are constantly shifting after all, neurochemical levels going up and down, hormones affecting us at different times of the day (or month) in different ways, stress adding to it, possibly illness, diet too.  All of them play a part, but everyone experiences those, yet everyone does not develop OCD?  Why?  Because not everyone has the vulnerability, and for those who do, its like Russian roulette of whether your OCD is going to trigger or not.  Maybe you'll get lucky, maybe the specific set of circumstances never quite lineup for you to experience OCD.  And for those of us who do have it, it waxes and wanes depending on these various conditions, we become more susceptible at times and less so at others.  So yes, all those things can contribute to our OCD vulnerability, but they aren't the underlying cause.  Absent that OCD flaw a person experiencing the exact same situations as we do doesn't develop OCD.   In fact the PTSD example you give is a great comparison, two soldiers, for example, can be in the EXACT same incident, one can come out of it only slightly shaken up, another can develop full blown PTSD.  Same situation, perhaps same exact training to get there, but very very different results.  

To be clear, that is not to say that a person is guaranteed to get OCD, PTSD, alcoholism, etc. if they posses these vulnerabilities, nor does it mean that behavior plays no part, I think it does.  For example engaging in compulsions worsens ones symptoms and suffering from OCD.  But I wholeheartedly believe that absent the underlying flaw, most if not all OCD sufferers would not develop the disorder, even had they been exposed to the exact same circumstances.
 

18 hours ago, gingerbreadgirl said:

You say that CBT only works around the underlying brain fault but this doesn't explain why plenty of people recover completely.

I have never come across any scientific literature which lists OCD as curable.  All the literature I have come across cites OCD as a chronic condition.  A condition that can be managed, and by some people managed well, but a condition that we remain vulernable to throughout our lives.  If it were purely behavioral than we could cure it.  We could learn a new behavior to replace the old, and having done so we should be no more likely to develop symptoms than another person.  But once you've had OCD the odds are you'll experience it again.  You might learn how to respond to it better and not let it get out of control, but those intrusive thoughts still happen, they still affect us differently than non-sufferers.  Such an outcome again matches well with the idea of an underlying physiological flaw.  You may adapt to it, you may learn to work around it, but its still there, you are still vulnerable.  Again I go back to my asthma (or my lactose intolerance).  I have learned how to modify how I live to compensate for the issues both situations cause.  I manage both conditions, but I am not cured of either, even if they seldom bother me, or when they do don't bother me much.  OCD has affected me in a very similar fashion, I've learned how to manage it, and that has given me my life back.  But I would happily jump at the chance to be free of it forever.

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