Please note: I refer to "MAPS" below, although I'm aware that there has been a rebranding of some sort and "Lykos" is the organization that brought the treatment originally developed for years by MAPS forward for consideration by the FDA. As a trauma survivor viewing events collectively and holistically from the outside, I don't view it as my responsibility to sort out the nuances of changes in branding, and the extent to which they've brought (or failed to bring) real change. My overall point is that the organization long known as MAPS and the people who have long been involved in it can still be generally referred to as MAPS, and the treatment put forward was developed by MAPS long before Lykos formed, which is why I still call it MAPS' treatment. I'm not interested in the nuances of who exactly is to blame for what and to what extent those people still have leadership roles in the current forms of Lykos and MAPS--I'm providing my perspective on the overall arc. Anyone interested in those nuances should look more closely at the distinctions between Lykos and MAPS, the more recent changes in MAPS' leadership, etc.
This is a personal blog and I'm about to share my personal views as a complex trauma survivor on a topic that has become very heated. It's a topic that many different survivors will validly have different perspectives on, all of which deserve to be included in any discussion on this issue, including those with perspectives at odds with mine.
In some ways, it's a tale as old as time. A treatment or potential treatment exists (or is proposed to be offered) and heated discussion ensues about whether the benefits outweigh the potential risks. Those who have been harmed or are at greater risk of being harmed may understandably take the view that it should not be available for anyone or that it should be only under very narrow limits (that they feel would prevent harm). Others deeply in need of the treatment may take the view that it should be made available: lives are very much at stake, and people who are suffering should get to choose for themselves what risks they will take (within limits, the exact contours of which should be a matter of nuanced inclusive discussion not something anyone dictates for all survivors).
I'm not going to argue here or carefully build a case. I'm just setting out my perspective and views to be perhaps elaborated on later. It doesn't count more than others' views but it should count for something given my genuine personal stake in the matter.
I deeply disagree with the FDA's decision. I believe this treatment ought to have been made available. I'm devastated that MAPS version of MDMA assisted therapy was rejected, and that rejection may ultimately affect my personal fate in a very negative way. That hope was very important to me. That hope is now dead.
I'm not interested in a debate on the above as part of this post. I've informed myself carefully about the many criticisms being levelled at this form of therapy and it remains my firmly held view that I and other trauma survivors who wished to do so should have had the option to pursue this form of healing.
However, that's not the end of the story for me.
Despite remaining a firm supporter of this treatment AND specifically the MAPS model (generally--though I'd tinker with it a bit personally), which I find deeply trauma-informed and which has been enormously healing for me in the context of ketamine assisted therapy, my view is that critical perspectives from trauma survivors are essential, should be actively and humbly solicited and gratefully platformed/honoured, and should be carefully weighed at every stage of how these treatments are offered .
This doesn't mean that people for whom a particular form of treatment is, may be, or has been harmful should get to dictate for every other survivor what types of risks they may accept, what kinds of treatments they may choose, what their priorities for healing should or must be, or any other big question. We all have a major stake in this. Our well-being and sometimes our very survival are at stake. Every survivor perspective should matter. Professionals or activists/advocates purporting to speak about what's best overall should refrain from speaking over or purporting to be the voice for PTSD survivors generally, elevating the views only of the survivors who support their narrative, while demeaning, erasing and dismissing those who don't. Deep humility is called for on all sides.
Moreover, to the extent that people critical of a treatment invoke and platform professional perspectives that are demeaning and dismissive of survivor perspectives generally or ignorant of past survivor acdvocacy on the topic, things get complicated. While I support critical perspectives, when there is a kitchen sink approach to the criticisms, real harm can be caused going beyond the debate at issue and narratives can be opportunistically promoted that ignore existing survivor advocacy about the harms of some existing paradigms and approaches. I'm not saying people can't favour an approach in which the old paradigms remain central in their original or a modified form (we are all entitled to our views--and survivors will not all share the same perspective) but in doing so it's not okay to position themselves as speaking for survivors generally when many survivors have strongly spoken against these paradigms as disempowering and harmful.
So anyway, as just one survivor, here are my views:
MAPS is an organization that has had some very flawed leadership. When confronted with some undeniably very serious issues (serious harms/abuse that had materialized), some of that leadership failed to address those issues with the decency, moral fortitude and humilty they called for. They failed to offer gratitude and solidarity to the survivors who spoke out about how they had been harmed. They failed to sufficiently name those harms but instead used watered down euphemistic and sometimes outright misleading language in talking about them. The arrogance, condescension and complacency were palpable. While every form of treatment will have harms materialize, including some very severe ones, it is NOT optional for organizations in charge of providing the treatments to respond with a lacklustre, ungrateful, non-courageous, non-humble waving of their hands, no matter how uncomfortable the topic may have made them feel, no matter how much they may have feared that acknowledging those harms would have set back their aims. Survivors who suffered harm deserved to be supported through every step of its aftermath. I don't believe that happened and it was shameful. Again that's just my personal perspective based on what I've observed.
MAPS is also an organization with some of the most decent, skilled, trauma-informed clinicians and researchers that I as a survivor could ever hope to be involved in developing a treatment to offer in relation to complex trauma. Many spent decades before psychedelic therapy was ever on the radar in any real way developing expertise in healing for complex trauma survivors that they brought to this work. AND while some of the leadership was inexcusably lacking in humility and concern about harms caused, I've personally observed other high level clinicians affiliated with MAPS speak with deep concern and humility about harms caused.
I absolutely do NOT agree that MAPS is a "cult." The therapy model is trauma-informed, non-directive, flexible, and exactly the approach to treatment that I need for my healing. Like any approach it's not for everyone and can be mis-applied by unethical and incompetent clinicians, but no approach is for everyone or immune from being mis-used to cause harm. That should not mean it should be denied to those for whom it's not only helpful but essential. It means ensuring accountability for harm that occurs and taking suitable preventive measures should be a top priority.
I do, however, note that my personal impression is that there do seem to have been some cult like elements within MAPS that need to be addressed (in the same leadership that handled concerns about harm so poorly).
I personally think MAPS is an organization that has some of the very best clinicians and researchers, along with some people who have caused harm (clinical harm as well as institutional betrayal by others in failing to sufficiently acknowledge and redress those harms thereafter) and should have stepped aside. I think MAPS treatment should be available. I would choose it over other options for my healing as someone who has informed myself about the issue and followed it for years, seen MAPS' clinicians speak, interacted with some, received this style of treatment over a lengthy period of time (in relation to ketamine not MDMA so with some modifications but the same therapy approach underlying it). There is no reason that should be taken away from those of us who have benefitted from it and/or wish to benefit in the future. But there needs to be organizational accountability for those in higher positions who let their mission get in the way of their humility and accountability for far too long. A change of leadership would be a very good step, IMO. Or a shift to a new organization altogether without those toxic elements.
Going forward, humility and accountability need to be welcomed and taken very seriously by all those involved in this arena. Survivors with a diverse range of perspectives (we definitely won't all have the same needs or views) need to be welcomed into the discussion. People speaking generally for or against the treatment need to stop speaking over survivors (even if they are survivors themselves--they don't get to co-opt others' voices by purporting to be their champions or advocates). Far too much of that has happened on all sides. Critical voices need to be welcomed and those critical voices (if they choose to make general points that go beyond their own personal experiences) need to be subject to those same high standards of humility and accountability.
I'm offering this up as my view if I were to get a vote. I was unpersuaded by the more technical/procedural/science-y issues that seemed to have led to the FDA rejecting the treatment. I'm heartbroken and feel enormously let down by that decision. But I do feel that there are aspects of MAPS culture that have caused harm which must be addressed and if that was the basis for the rejection then I can certainly understand it.
Overall, sadly, it's been a giant train wreck on all sides and, as far as i can tell, few seem to have bothered to do the hard work of embarking on nuanced open-minded survivor-centred discusssions about a prompt safe and healing way forward.
(A picture of a duckling in a pond simply because I find it cute and healing)
Comments