Forum naming changes

[anthony]

Due to CPTSD becoming an official diagnosis this year within the ICD 11, and the ICD 11 now having published the new PTSD and CPTSD structure, this now means that MyPTSD must adapt and cater to the officially published version of CPTSD by the World Health Organisation (WHO).

WHO have changed it to fit a trauma and stressor disorder, not personality disorder, as was originally viewed. I'm unsure of its comorbidity diagnoses at this time, but that information will be obtained. Based on the information we do have, staff have been discussing a new structure, and I am at an impasse myself to the exact outcome at this time.

So what I'm going to do, is rollout aspects that are required / staff have fairly agreed upon or I have made a decision about -- the rest will then be discussed with members and staff separately, to decide the overall final category / forum structure.

Member feedback is just that, feedback about what we (staff) are giving you, NOT a debate with other members about their feedback.

This thread will open / close accordingly.

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Changes To Date

1. Category name change from "Post Traumatic Stress Disorder (PTSD)" to "PTSD & CPTSD".
2. Forum name change "Supporter General Discussion" to "Supporter Discussion".
3. Removed two under utilised supporter forums, integrating them with the new general discussion.

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Explanations

Category name change is performed to first include complex symptoms with PTSD symptoms, to expand symptom structure to meet both DSM 5 PTSD, ICD PTSD & CPTSD appropriately, minimising cross-talk for forums, and move out problematic forum subjects that are not symptom based and can apply more broadly than just a sufferer.

Supporter discussion forum is now a catchall for most things supporter. This integrates with removing "supporter self management" and "supporter sufferers symptoms", both of which are lucky to have a new thread or two per month posted. All those threads are moved into the catchall, supporter discussion, now. If we find a specific topic that supporters need and is used frequently, then such a forum can be created. But less is more, is usually the better approach for under utilised forums.

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Points to Note

The welcome category and forums will not be changed.

The staff & misc category and forums will not be changed.

The complex trauma forum will be spread across relevant topical forums, as complex trauma is not an actual type of trauma. It's a name to describe longevity of typed trauma, such as childhood, sexual abuse, domestic violence, et cetera. It was created to appease the unofficial use of CPTSD until a diagnosis actually existed. That day has come, nearly, 2017.

 

[anthony]

Open for feedback.

Apart from the above minor changes, a new change is moving four forums out of the PTSD / CPTSD category, to a new category:

Why?

This removes the issues surrounding what is an accomplishment, from being PTSD specific, to now both supporters and sufferers have a general, specific, category where anything that is an accomplishment can go in.

Employment has been expanded, and additionally, it is not PTSD / CPTSD related. It is an occupational component of life with these disorders.

Medication and therapy additionally are not direct consequences of PTSD, they're environmental component brought into your life dependant upon your healing strategy. They apply to supporters and sufferers equally, not just sufferers. They also apply to other disorders seeking treatment, not just PTSD / CPTSD.

Purely a first proposal draft structure:

PTSD & CPTSD

> Anonymous
> Anxiety, Panic & Hypervigilance
> Avoidance
> Core Beliefs / Cognitive Distortions
> Depression & Suicidality
> Dysregulation
> Dissociation, Depersonalization & Derealization
> General
> Other Disorders
> Polls
> Premium
> Relationships
> Sleep & Nightmares
> Trauma Diaries
> Member Diaries
> Premium Diaries

We have made the appropriate changes to meet ICD 11 PTSD & CPTSD, as well as DSM 5 PTSD with sub-types that cover CPTSD (in a different manner). Staff have been nutting this out the past few days.

We added hypervigilance to be more inclusive of the symptom criterion.

We added new forum, avoidance and dysregulation, to help push specificity in talking about symptoms, thus focusing discussion and selves onto our actual problems, instead of generalising them.

We removed flashbacks, being a dissociative episode, and instead stuck with the diagnostic terms for dissociation. This removes DID and such discussion from that forum, pushing it to the other disorders forum.

Suicidality was included as a change to suicide, as suicidality means both thoughts and actions about suicide (ideation and suicide the act), being more accurate once again.

Most others are the same.

We will flip threads around between the new structure once permanently settled that this is it, after feedback. @joeylittle will likely publish a more structured outline of what will go where, so you know what staff will move if posted where.

Otherwise... thoughts? Can you improve it based on diagnostic criterion / establishment. Personal preference and desires are not really relevant in forum structure -- it must resemble diagnostic structure. It did that as we grew, then diagnosis changed, and we're just getting around it now CPTSD is actually at our door. So including a PTSD change is warranted in structure to improve accuracy.

 

[BlueOrange]

Non-suicidal self-injury doesn't have an immediate place to go, it may be worthwhile to add 'Self Injury' to the end of 'Depression & Suicidality'.

We removed flashbacks, being a dissociative episode, and instead stuck with the diagnostic terms for dissociation. This removes DID and such discussion from that forum, pushing it to the other disorders forum.

This seems problematic to me, because:

• Differential diagnosis between DID and PTSD is just plain difficult - the difference between CPTSD and DID is even more difficult to establish; there's good odds that the difference between CPTSD and DID is "which therapist did you see?"
  
• DID sufferers tend to be primarily concerned about dissociation, which is why 'Flashbacks and Dissociation' has become the unofficial DID subforum

I can appreciate the value of untangling the DID conversations from other conversations, and so I'd like to suggest that "Dissociation, Depersonalization & Derealization" be split into two subforums:

• Memory loss & intrusive memories
• Depersonalization, derealization & dissociated identity

Thinking about what we tend to see with various folks, these groupings are likely to correspond with the interests of people posting. DID conversation is reasonably easily shifted into an identifiable place, without creating fuel for disagreements about whether things should move to Other when someone carrying a CPTSD diagnosis starts talking about how they suddenly revert to being a 6-year-old, and whether or not that's DID, etc.

 

[lostforgottensoul]

We removed flashbacks, being a dissociative episode, and instead stuck with the diagnostic terms for dissociation. This removes DID and such discussion from that forum, pushing it to the other disorders forum.

But, I have flashbacks and dissociate and don't have DID. And flashbacks is a big PTSD symptom so it wouldn't go under "other disorders" because it's not. Would that go under Dissociation, Depersonalization & Derealization or General?

I do like the change in many ways as I think it will reduce just posting everything in Discussion as that's what I did, it would help to put things in the right areas this way as there are more of them that are more specific but I think things are going to be placed in the wrong areas for some time.

Also, can you put the support areas back under the PTSD ones? I find it difficult as I keep clicking their areas instead of scrolling past them. It is also hard when I have a smaller amount of time to keep having to scroll past them.

 

[Bristol]

Id add a vote to a self injury section somewhere :)

 

[Sandstone]

Delighted to see an avoidance section. It is one ofthe quieter, less dramatic symptoms, but can have such a major impact on quality of life.

I agree that the thoughts on how to structure dissociative disorders need more refinement. Doesn't DSM PPTSD have a dissociative subtype? So two people could be discussing the same problems, but their posts belong in different fora because of their diagnoses?

It sems to me important to hold onto the fact that all these conditions are derived from trauma and our varying capacities todeal with it.

 

[joeylittle]

Non-suicidal self-injury doesn't have an immediate place to go,

It would go likely go under dysregulation as would other forms of self-harm (binge eating, reckless behavior, etc). It's more appropriate there.

Having a separate forum for it isn't necessary. Also, would be problematic in that we'd likely end up with posts from guests who only self-harm, and are looking for specific help with that. There are other, better places on the internet for them to get support.

Would that go under Dissociation, Depersonalization & Derealization or General?

Yes - as Anthony said, flashbacks are a form of dissociation. It will be a bit of a learning curve to teach people that, but I think it's a good move.

 

[joeylittle]

Also, can you put the support areas back under the PTSD ones?

Not right now, no. We are giving that area a little more prominence to see if we can grow membership.

You can collapse sub-forum groupings by clicking the up/down toggle to the right of the header for the area.

 

[lostforgottensoul]

You can collapse sub-forum groupings by clicking the up/down toggle to the right of the header for the area.

Thanks! I didn't think it would stay collasped if I close and re-open but it does.

 

[joeylittle]

Differential diagnosis between DID and PTSD is just plain difficult - the difference between CPTSD and DID is even more difficult to establish; there's good odds that the difference between CPTSD and DID is "which therapist did you see?"

I'm not sure that's wholly true.

DID is its own disorder, with its own specific criteria. Of course there are overlapping areas and misdiagnosis - that's unavoidable.

But we are not a resource that exists to address or encourage self-diagnosis.

I would expect there'd be some growing pains in figuring out where certain topics lived - and I'd also expect people with DID to utilize the Other Disorders area, the Dissociation area, and others as needed.

We've often discussed adding a separate forum specifically for DID, or BPD, or GAD... but the end result would be pointing us toward becoming generalized mental health forum, which is not what this place is about.

Take a topic like dissociative amnesia: you may experience that with a given diagnosis of CPTSD, PTSD, DID, DDNOS.

That topic would belong in the Dissociation forum.

Whereas, a targeted topic like "my alter refuses to share executive function" - that is highly specific to DID, and therefore is an issue belonging to Other Disorders.

What we've proposed is simple and will help us evolve as these diagnoses are in transition (the draft proposal of DID for ICD 11 indicates factors that would further specify (and separate) DID from being misdiagnosed as something else).

And - the very bottom line is, we are organizing by symptom groupings that are specific to what is known about CPTSD and PTSD. While DID is a diagnosis with overlap...so are Depression, Bipolar, and others. It is assumed that people here who have a DID diagnosis are also dealing with trauma (likely early developmental and prolonged), and will use the forum as it is primarily geared - which is towards managing the afteraffects of trauma.

 

[anthony]

Firstly, what @joeylittle said. We've already had these discussions privately. I want to add this line of thought to you, to help with your own logical processing for this situation:

I can appreciate the value of untangling the DID conversations from other conversations, and so I'd like to suggest that "Dissociation, Depersonalization & Derealization" be split into two subforums:

• Memory loss & intrusive memories
• Depersonalization, derealization & dissociated identity

Firstly, dissociated identity refers to DID. We are not a DID community. DID is not a comorbid diagnosis for PTSD. DID is a standalone personality disorder. We removed symptoms from the forum name to just, other disorders, for this reason. Other symptoms are catch-all for general forum.

We looked at the personality disorders common with those diagnosed in the CPTSD spectrum, however, our focus is PTSD, and now CPTSD. The only diagnosis for CPTSD is the beta draft from WHO. The problem is that the list of current official comorbid diagnoses is long, and most come with overlap of existing forum structure, such as anxiety, depressive, bipolar, mood, substance abuse, etc -- all comorbid disorders.

The draft proposal above highlights to mimic, as best as possible with a single catch-all forum, current PTSD and CPTSD symptoms. Add the anonymous and trauma diaries being different angles, yet specific to those with the diagnoses.

Behaviour was one that we also tossed around. The problem is, when you start to look at behaviour as a forum, whilst a criterion, it is too broad. I dissociated whilst driving (behaviour). I fell asleep and had a nightmare (behaviour). See the cross-over already? It would turn to shit super fast. Don't think it doesn't, it does. Experience has dictated this.

Self-injury was discussed, and self-injury is a form of dysregulation, which was originally not going to be included, but we forced it in there because dysregulation (cutting, excessive emotion, out of control behaviour, et cetera) is a primary component of CPTSD. You read these threads often enough, and these are the exact topics that will belong in that forum.

We're trying to meet the addition of CPTSD, whilst only modify to the current PTSD criterion, which have changed between versions since forum structure.

In addition to PTSD, Complex PTSD is characterized by:

1. severe and pervasive problems in affect regulation,
2. persistent beliefs about oneself as diminished, defeated or worthless, accompanied by deep and pervasive feelings of shame, guilt or failure related to the traumatic event, and
3. persistent difficulties in sustaining relationships and in feeling close to others.

#1 is covered by the new dysregulation. #2 is covered by core beliefs / negative cognitions (which crosses over with PTSD). Shame and guilt must be discarded, due to being emotions. If you created a forum for shame and guilt, or emotions, go back to the above issue with behaviour (you can throw just about every discussion into it). #3 is already covered in relationships.

At the same time, we must meet a minimalist structure. Less is more. It is super true in running a forum. You only have forums that absolutely work and are used. Trial them, sure... but if they fail, merge them into the structure. That is what was just done with two super under utilised supporter forums. It is better to have a single busy forum that catches a broader range of topics, than 10 little used forums. Psychology applies here -- people will not post in something, even though they want to post about that topic, if they feel their response will not be answered within a suitable time frame, if at all. This is super important to a communities overall success.

I hope that helps explain some more of our reasoning around this.

This is why we want feedback, to see if we missed anything. In the cases so far, we haven't, and have already debated these aspects to pieces using scientific data and diagnostic criterion alone to base our proposal.

 

[anthony]

I didn't think it would stay collasped if I close and re-open but it does.

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