CLOSED - Fund Dissociative Identity Disorder (DID) Research!
Simone Reinders is raising money for King's College London
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THIS FUNDRAISING EFFORT IS NOW CLOSED.
INFORMATION ABOUT DID:
WHO
The Trauma-related Dissociation Research Group from King's College London (KCL) in the United Kingdom urgently needs your help to fund research into the psychiatric condition Dissociative Identity Disorder (DID). Watch this movie (DID on YouTube) to understand more about DID or read the information at the bottom of this page.
WHY
Approximately one million people in the UK suffer from DID which is related to severe childhood traumatization.
Currently, from the moment of seeking treatment for symptoms to the time of an accurate diagnosis and treatment, individuals with DID:
* Receive an average of four prior other diagnoses because mental health professionals are unfamiliar or reluctant to give the diagnosis
* Have a history of years of inefficient pharmacological treatment because no medications are known to help
* Have had several admissions to hospital because of a lack of correct treatment
* Spent 7 years, with reports of up to 12 years, in mental health treatment because of the the above
In addition, DID is harmfully portrayed in the media:
WHAT
We want to change this by investigating brain and body based measures that could be used for faster diagnosis and better treatment!
Our first target is to raise £1,000 which will allow us to set up a database acquiring a range of clinical measures of dissociative symptoms from all participants remotely. This would help to follow up effects of treatment over time and relate them to brain and body measures.
Our second target is to raise £2,500, which is £25 per participant to purchase a wearable device to acquire body based measures remotely.
Our third target is to raise £14,000, which is £140 per participant to obtain and analyse a blood or saliva sample. This includes compensation for time and travel for the participant to KCL.
Our fourth target is to raise funding to acquire brain imaging data. We would need £360 for a brain scan for participant, which will provide important information on brain structure and function. This is a high value charity rate and will also include backup and data analysis support. Read here how computers can detect DID.
Further targets will be set once these targets have been reached.
Your funding will help to continue collating scientific evidence using (neuro)biological and psychological measures. This will continue to validate the existence of DID and speed diagnosis and treatment using body and brain-based information. Ultimately, this will improve the quality of life of individuals with DID and reduce suffering and potentially save lives!
This future work will build on previous successful and high impact research of Dr A A T Simone Reinders, PhD and her team that has initiated a broader understanding and acceptance of DID. Dr Reinders’ pioneering papers have been recognized with multiple awards, laying the foundations for projects that we want to fund using your donations.
Please donate whatever you are comfortable with.
All donations will go to a dedicated account at King's College London.
Thank you for supporting our endeavours!
For further information please contact Dr A A T Simone Reinders or a member of her team.
Email: dissociation@kcl.ac.uk
Web: Neuroimaging DID
Twitter: @AATSReinders
BACKGROUND INFORMATION
What is Dissociation and what is Dissociative Identity Disorder (DID)?
Dissociative symptoms find their origin in early childhood maltreatment and resulting traumatization. Dissociation is an unconscious “mental escape” from highly stressful or traumatic moments and helps the individual survive. Memories of such painful times become cut off or “fragmented” from conscious awareness and debilitating, misunderstood symptoms emerge. Trauma is remembered by the body and therefore dissociative symptoms affect not only the mind but also sensation, motor control, and behaviour.
Experiences of dissociation may range from mild detachment of the immediate surroundings to thoughts, feelings and memories seeming like they belong to somebody else. This contributes to a lack of sense of self or identity confusion. Dissociation can disrupt consciousness, short- and long-term memory, emotion regulation, perception of the environment and recognition of friends and family. Severity, frequency, and type of symptoms vary significantly between people with the same diagnosis.
Signs can be as subtle as unexplained medical challenges (migraine, paralysis, chronic fatigue) or as obvious as sudden personality alterations such as witnessed in those with DID and a similar condition called Otherwise Specified Dissociative Disorder (OSDD).
DID is the most severe, complex, and controversial of the dissociative disorders. With a trauma-related cause it is thought of as a form of complex post-traumatic stress. Scientific research regarding the neurobiology of trauma-related dissociation is scarce, mostly due to the challenges acquiring research funding. Therefore, little is known about the (neuro) biology of associated symptoms. Lifetime prevalence of DID is around 1.5%, similar to widely researched conditions such as schizophrenia and bipolar disorder.
Individuals with DID or OSDD are frequently misunderstood, under-diagnosed and struggle often for decades without knowing why.
Left untreated, trauma related dissociative conditions can interfere with functioning, sometimes at the most basic level of self-care, leading to hospitalisation and further traumatic experiences with a seemingly hopeless pattern. DID and OSDD can result in long-term physical impairment and even (preventable) premature death. It is therefore critical to improve access to a fast diagnosis and treatment for individuals suffering from this disorder.
Why is research important?
Both under- and misdiagnosis of dissociative identity disorder (DID) hamper recovery. This leads to years of ineffective therapy, resulting in prolonged personal suffering of the individual involved plus high direct and indirect societal costs. For example, on average, someone seeking treatment for dissociative symptoms receives four incorrect diagnoses, inadequate intervention, has several hospitalisations and as a result can spend many years in mental health services with little to no improvement.
Despite the official recognition of DID in the current psychiatric diagnostic criteria (DSM-5) and past versions of the DSM a diagnosis of DID remains controversial and highly prone to under- and misdiagnosis. This controversy makes funding acquisition via regular pathways very challenging and therefore we seek your help to be able to continue our important and clinically relevant research.
Why we need you to help us change things!
Specialist psychotherapy is available but takes an average of 5-10 years and is hard to obtain due to minimal government funding/limited evidence. Biologically based research into medications and brain/body pathways that could speed up recovery in DID and OSDD are non-existent because obtaining the required research funding is equally challenging. The majority with DID or OSDD continue to struggle as they are given treatments and medications that do not help at all or are only aimed to treat co-morbid symptoms of depression and anxiety. This shows urgent need for funding to explore novel approaches to fast diagnosis and intervention. Understanding brain and body based mechanisms of dissociation will help facilitate more tailored therapeutic avenues (choice of medication and psychotherapy), prevent drugs being prescribed at random and ease debilitating dissociative symptoms.
Ultimately, with our research we aim to improve the quality of life of individuals with DID and reduce suffering and potentially save lives!
Research Aims:
Building on our previous studies our main aim is to advance detection of disorders involving dissociative symptoms. We intend to investigate whether emerging biological and brain-based interventions can help faster recovery.
Such new evidence for accurate specialised diagnosis and therewith faster access to tailored treatment will allow individuals to recover faster, safer and with less long-term effect from dissociative symptoms.
We will publish the results in high impact scientific journals as well as in wider accessible medium.
Confidentiality, Ethics and Safety Assurance:
The protocol will be submitted for approval to official UK ethics bodies. These include the independent National Health Service (NHS) Health Research Authority Committee (NHS HRA) and independent NHS Research Ethics Committees (NHS REC). The project will be subject to continual reviews for public and staff safety following up to date NHS Government advice related to COVID-19.
For further details regarding how data and participants will be protected please see: https://www.hra.nhs.uk/approvals-amendments/what-approvals-do-i-need/hra-approval/
About the team and how this research is informed by personal and professional experience:
The Project’s Lead Investigator Dr Reinders is considered a leader and international expert in the neurobiology relating to pathological dissociation. Dr Reinders was first to publish a study including individuals with DID using brain imaging and the first to show, based on brain activation evidence, that different identity states in individuals with DID show different patterns of blood flow the brain in response to listening to trauma-related autobiographical texts. Her important follow-up study demonstrated that these identity state-dependent patterns can not be simulated. This research has been pivotal for the causal discussion of DID and counters the view that DID is a non-genuine disorder. In a separate investigation, Dr Reinders used brain imaging data to show that DID and post-traumatic stress disorder share trauma-related brain biomarkers. This pioneering work provided evidence that DID is related to early traumatisation and is clinically relevant because it provides evidence for the valid psychiatric diagnosis of DID. In a recent publication, Dr Reinders showed how computers can aid the recognition of brains belonging to individuals with DID using machine learning algorithms.
This paper was awarded the 2020 Pierre Janet Writing Award of the International Society for the Study of Trauma and Dissociation (ISSTD: www.isst-d.org), which is given to an individual for the best clinical, theoretical or research paper in the field of dissociative and/or trauma within the past year. Dr Reinders was subsequently given the Mid-Career Achievement Award (2021) of the ISSTD resulting from outstanding cumulative contributions to research in the specialism of dissociative disorders.
Collaborators:
This research will be done in collaboration with expert researchers of the Institute of Psychiatry, Psychology and Neurosciences, of the Clinic for Dissociative Studies UK (CDS-UK: www.clinicds.co.uk), of The Cheshire Psychology and The CTAD clinic (www.cheshirepsychology.com) and with the support of First Person Plural - Dissociative identity disorders association (www.firstpersonplural.org.uk) and the European and International societies for trauma and dissociation (www.estd.org and www.isst-d.org).
Importantly, a volunteer research assistant and member of Dr Reinders’ research team has a diagnosis of DID. This will allow for pivotal patient and public involvement and engagement (PPIE) for advice on the ethical design, funding process and implementations of the research. They have a first-class degree in psychology and have previously worked as an Assistant Psychologist in the NHS.
Special thanks to Ackworth School in England (UK) for their permission to use the artwork as a logo for the neuroimaging DID projects: www.ackworthschool.com