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TMS for OCD - Your views for NICE


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1 hour ago, dksea said:

I have never come across any scientific literature which lists OCD as curable

Because in my experience most mental health professionals are too cowardly to use the word when I have asked them, they all like to edge their bets with the language they use. 

I do think we have to be careful not to become too reliant on what scientific literature states and sometimes we have to listen to the real life stories and views of people with the condition.  That's not to say we ignore scientific literature.

It is all semantics, but the definition of cure is 'restoration of health', and I believe that is absolutely possible with OCD.  If a person does not respond to the occasional intrusive thought with anxiety or compulsions, then technically that is not OCD...…  call it improvement, recovery... or cure.  

A subject that Kirstie and myself will be presenting about at the conference in a couple of months, partly based on a ridiculously negative article emanating out of north America that Kirstie stumbled across. 

 

 

1 hour ago, dksea said:

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.

Hopefully one day you will be :)   The concern I have with people accepting 'managing' their OCD (which is their choice, and sometimes what one person means by managing will differ to what another person means).  But the problem is that I have seen it happen to so many people, myself included, we make huge improvements, amazing, so we think we are coping and managing our OCD and then slowly, but surely, it starts to creep away and taking more and more of our life away from us again so eventually we end up close to where we were months or years previously. 

My own view is that recovery from OCD is a two-step process.  Step one is understanding and learning to manage our OCD to prevent further impact and start to grab our life back from OCD.  I find many people pauce at this stage. They may mainting their gains for a long time, which is amazing, but as above I beleive it leaves them open to relapse.  Step two is then to work to completely eradicate the OCD, bit by bit. 

Just my opinion and I accept not everybody agrees. :) 

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I would be very happy to undergo TMS for OCD if: 

- The side effects were shown to be mild

- There was a large double blind study or multiple studies demonstrating its efficacy in treating OCD

 

I would be concerned about the potential for severe side effects such as seizures, manic episodes and problems with executive functions. 

 

Also just to agree with Dksea- there is a huge amount of evidence that OCD is a physical problem with the brain.

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I think that it's important to be clear about the scientific evidence. Brain scans have shown differences between OCD sufferers and non-sufferers brains. That is not evidence OCD is a physical problem with the brain, or caused by a physical problem of the brain. It is evidence of what it is, differences. 

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2 hours ago, Gemma7 said:

The cognitive theory would be that OCD comes about through highly complex learnings, like things you learn about the world, people and yourself from birth. These guide your actions, adding further to your learnings.

At the point of a trigger, particular beliefs are suddenly brought to your attention and rules are broken, we take action and begin the cycle of OCD. The difficulty of getting rid of OCD comes from the complexity of how you've learnt. For example, if you've been brought up to believe thoughts say something about who you are, then the depth of that belief will be quite profound. You may have applied it thousands of times before, so it isn't so easy to just ignore it. If CBT does anything it shows you an idealistic way of learning and teaches you new experiences to add to the old ones you have. It also helps you learn new more helpful ways of thinking about things. It's not fool proof because we've been learning since we were born and therefore shaping our brains long before OCD. CBT is also usually introduced to people who have quite severe OCD, and there's nothing quite like the extreme distress of OCD to create some really unhelpful learnings. So the reinforcement of behaviours in OCD on top of all previous learnings make it one hell of a fight to overcome. 

A theory for why OCD behaviours run in families could therefore be because you can't learn things that your parents/guardians don't know. You will also have similar thinking styles and beliefs about the world. Could there be a genetic component, possibly but current understanding is limited. 

This is so perfectly worded it deserves repeating. I'd pin it permanently and put it in gold letters if I could. 

Extremely well said, Gemma. :clapping:

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1 hour ago, Gemma7 said:

I think that it's important to be clear about the scientific evidence. Brain scans have shown differences between OCD sufferers and non-sufferers brains. That is not evidence OCD is a physical problem with the brain, or caused by a physical problem of the brain. It is evidence of what it is, differences. 

Just as an example, there are physical differences between the brains of London black cab drivers and ordinary people, but the drivers were not born that way. It has been proved that the act of memorising every street in London actually causes the brain to change, so it's not unreasonable to think that the obsessive thinking and repetitive behaviour in people with ocd can cause brain differences to develop.

Quote:

"Neurobiologist Howard Eichenbaum of Boston University commends the study for answering the "chicken-and-egg question" posed by Maguire's earlier research. He sees it as confirmation of the idea that cognitive exercise produces physical changes in the brain. "The initial findings could have been explained by a correlation, that people with big hippocampi become taxi drivers," he says. "But it turns out it really was the training process that caused the growth in the brain. It shows you can produce profound changes in the brain with training. That's a big deal."

From: https://www.scientificamerican.com/article/london-taxi-memory/

However, like Gemma says we don't have enough evidence to be able to draw conclusions one way or the other when it comes to ocd at the moment, but I do think this is a very interesting study.

Edited by Guest
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On 11/09/2019 at 15:33, Ashley said:

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.

-----

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.

I saw this article recently:

Deep transcranial magnetic stimulation in OCD

It does appear they found some benefit BUT

-the numbers in the study are very small (99 patients)

-and the benefits were only measured at the end of the 6 week treatment and again one month later. (short term gain only, no proof of lasting improvement.)

My feeling is it could be an area of potential treatment as a second or third line option for those who haven't responded to at least 2 attempts at CBT, with or without medication. It needs further research on bigger numbers before rolling it out across the NHS, but perhaps should not be ruled out as an option in the right circumstances. 

Very important to this study was that they triggered OCD thoughts/fears just before applying dTMS and they made the trigger specific to each person. That clause means this cannot ever become an alternative to CBT, only ever an adjunct to it or a later treatment after CBT has been explored and the individuals fears identified.

It may also transpire to be only a short-term improvement which fades or disappears in the medium term. My gut feeling is that the best way to use it may be between courses of CBT. 

I can see from a functional point of view how it could work by activating OCD thoughts and then disrupting the neural circuitry to weaken the connections which maintain OCD, so the theory is sound. So...

-the person would have initial CBT to identify their specific obsessions and compulsions and work on these in the normal way

- if they failed to respond to 2 courses of CBT each of minimum 12 weeks  (6 weeks is too short for resistant OCD who are the proposed target patients) and possibly with different therapists or a standard therapist followed by one more experienced in treating OCD

- then add in dTMS

- then repeat CBT while the brain plasticity has been temporarily increased by dTMS. In my opinion this step is likely to prove vital to longer term full recovery and maintenance of any improvement.

 

Based on all of the above, I would cautiously accept dTMS as an option in some cases, but would not wish to see it invested in as a treatment for OCD before investing a great deal more in much needed numbers of qualified therapists. 

I surprised myself by concluding that it can't be ruled out as an option once more is known about the long term results (side effects, complications and duration of improvement.)

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45 minutes ago, Gemma7 said:

I'm not disagreeing with your points they are obviously reasonable but it would be nice to see a study that hasn't been funded by a TMS company showing positive results. 

Absolutely. :yes: Independent studies (note: pleural) are needed, so we're a long way off using it 'routinely' or 'rolling it out across the NHS', but based on the studies available at this time I believe it's worth further investigation and cannot be dismissed out of hand. 

1 hour ago, gingerbreadgirl said:

Snowbear! :) 

How are you? 

 

1 hour ago, Gemma7 said:

Yes, how are you? The forum has missed you :) x

Hi peeps. :) I'm fine thank you. Just popped by and the title of the thread caught my eye so thought I'd respond. I hope you are both well. :) 

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On 18/09/2019 at 18:12, Gemma7 said:

A theory for why OCD behaviours run in families could therefore be because you can't learn things that your parents/guardians don't know. You will also have similar thinking styles and beliefs about the world. Could there be a genetic component, possibly but current understanding is limited. 

Yes, families could pass along patterns of behavior, and therefore you could therefore see commonality in families, however that would not account for twin studies.  If OCD did not have a genetic root cause, then there should be no difference in occurrence between identical and non-identical twins.  The most significant difference between those two classes of people is genetic, otherwise they are (for the most part) raised in the same conditions as each other, with the same families, in the same environments and subject to the same behaviors.  Yet the difference between the two sets when it comes to OCD is significant.  Twin studies are the gold standard when it comes to identifying a genetic basis for issues and OCD twin studies though not numerous have consistently shown this.

I do agree that learning, experience, and behavior contribute to how and when OCD presents in each of us.  When I speak of OCD being a genetic/physiological problem, that is merely the core issue, the root problem.  The learning/experience/behavior is layered on top of that.  Apologies if I have not made that more clear.  I think we both agree more than we disagree, and yes absolutely the experiences we have in life play a part.  The flaw, in whatever part or parts of the brain it lies only makes us vulnerable to OCD.  Whether or not it flares up, how often, and the thoughts that affect each of us is definitely a product of environment and experience.  Its an unfortunately complex and complicated disorder in that sense.  Fascinating, perhaps, from a purely academic standpoint, but painful and unfortunate in real life.
 

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6 minutes ago, gingerbreadgirl said:

i'd be really interested to read about this DKSea, do you have a link? 

Here's info on twin studies in general:
https://en.wikipedia.org/wiki/Twin_study

Here's info on twin studies related to OCD with a number of citations to relevant studies.  The key finding:
"Monozygotic twins may be strikingly concordant for OCD (80-87%), compared with 47-50% concordance in dizygotic twins."
https://www.medscape.com/answers/1934139-93612/what-is-the-role-of-genetics-in-the-etiology-of-obsessive-compulsive-disorder-ocd

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17 minutes ago, dksea said:

Here's info on twin studies in general:
https://en.wikipedia.org/wiki/Twin_study

Here's info on twin studies related to OCD with a number of citations to relevant studies.  The key finding:
"Monozygotic twins may be strikingly concordant for OCD (80-87%), compared with 47-50% concordance in dizygotic twins."
https://www.medscape.com/answers/1934139-93612/what-is-the-role-of-genetics-in-the-etiology-of-obsessive-compulsive-disorder-ocd

thanks DKSea, I'll check this out :) 

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