Actions Taken based on Discussion about Changes to CPTSD

[Kizzie]

 I've written to the WHO and made a suggestion for changing the name and definition of CPTSD based on our discussions and polls.  Understandably they are somewhat reluctant to change the name given it is widely used, but it is worth letting them know on the record we have some concerns with the diagnosis.  Here's what has transpired thus far (I will add to this if/when there is anything other communication).

Proposal to the World Health Organization International
Classification  of Diseases Edition 11 (WHO ICD-11)

13 Dec - Proposed Name and Definition Submitted by Kizzie

Cumulative Traumatic Stress Injury (CTSI) describes enduring personality changes that may develop in childhood or adulthood following exposure to a series of past or continuing events of an extremely threatening or horrific nature, most commonly prolonged or repetitive events from which escape is difficult or impossible (e.g., torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse). This psychological injury is characterized by the core symptoms of PTSD; that is, a persistent sense of threat, re-experiencing the trauma, and avoidance of traumatic reminders. CTSI is also characterized by three additional symptoms including: 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. The disturbance causes significant impairment in personal, family, social, educational, occupational or other important areas of functioning.

Dec 15 - Response by Geoffrey Reed on behalf of Mental Health TAG

The primary feature of this proposal is to change the name of the category to add a characterization of it as a psychological injury and to make additional comments about treatment. Although we understand the intention of the name change, this disorder does not always rise our of cumulative events. Also, the current name has been widely used, including in the scientific literature, where there has been much discussion about this entity. See from earlier this year: Brewin, C. R., Cloitre, M., Hyland, P., Shevlin, M., Maercker, A., Bryant, R. A., Humayun, A., Jones, L. M. Kagee, A., Rousseau, C., Somasundaram, D., Suzuki, Y., Wessely, S., van Ommeren, M., & Reed, G. M. (2017). A review of current evidence regarding the ICD-11 proposals for diagnosing PTSD and complex PTSD. Clinical Psychology Review, 58, 1-15. doi: 10.1016/j.cpr.2017.09.001.
The characterization of the disorder as a psychological injury is unnecessary because it is redundant with the concept of the disorder itself.

Dec 22 - My Response

Thank you for your thoughts on my edits to the proposed section in the ICD-11 about CPTSD. My proposal was based on discussions by members of a forum (Out of the Storm), which currently has 4,500+ registrants from all over the world who have CPTSD. While we are delighted that the term will finally become an official and unique diagnosis in this publication, we also feel strongly that this is an opportune time to begin to use a name that clearly conveys the nature of what we suffer from.
For the vast majority of us, psychological trauma has been ongoing/repeated (i.e., cumulative). In fact, there is not a single instance I can recall in which the member's symptoms developed otherwise. In addition, for the majority of us the symptoms are not simply a reaction to something in the past, they are a reaction to both past and ongoing trauma, either because the perpetrators are still in our lives and/or we have recreated the trauma with other people in adulthood. Thus, we do not view the word post as an accurate description of what we are dealing with.

Of utmost importance is the word disorder which for the majority of us is pathologizing and stigmatizing. It emphasizes the symptoms we have rather than the fact that we developed them because of being traumatized by external events/people. For us, the word injury better captures the notion that our symptoms are reactions to abnormal events rather than a character defect (which is an attitude many of us experience). Injury is just so much less stigmatizing and validates for us and others that we are not weak or defective. There are numerous articles and current efforts to depathologize the language surrounding trauma. One example: Rosenthal, M., Reinhardt, K. & Birrell, P. (2016) Guest editorial: Deconstructing disorder: An ordered reaction to a disordered environment, Journal of Trauma & Dissociation, 17(2), 131-137.

[Three Roses]

This is great stuff! I'm excited to see what changes come. 

I would also point out that the reactions are in the brain, not necessarily the mind, and in some cases views the trauma as current and not passed.

[Blueberry]

  Kizzie!

[Fen Starshimmer]

Now, we just keep going with this.    

Echo Three Roses: we could also point out that there are profound physiological changes to parts of the brain and endocrine system and reference some studies.

[sanmagic7]

wonderful and very valuable beginning, kizzie.  you done good, girl!

kudos to you, kizzie, for putting it out there on our behalf.  and much gratitude as well.  if i ever find anything published that may have a bearing on this, i'll send it to you.  thank you so much - this is extremely validating, what you did.  you are a brave and marvelous advocate.  it ain't over yet.  big hug.

[Kizzie]

Just popping in to let you know I have not abandoned this thread (or advocating), I am restricted to the amount of time I can spend on the computer because of knee replacement surgery. In addition, our son is home for the holidays so we're spending as much time together as we can.

So, what time I have spent on here is related to admin and trying to post in certain forums because it is the holidays and so difficult for many of us.  I will be back to this once Jan rolls around though  

[FrillyFarmGirl]

Wow. Cool.