Patient Voices

Anyone else out there who has, like me, a neuroimmune disorder, such as transverse myelitis, ADEM, NMOG, etc.?
Tara Duffy is a neurology student in her last at the University of New Hampshire, who has ADEM herself. She is studying mindfulness and quality of life in these disorder and needs help completing an electronic survey for her capstone research study, (and to help the rare neuroimmune community).

Due to the rarity of these disorders, there is little information and awareness available, and the vast majority of research is focused on the diagnosing and treatment of the acute stages only. The purpose of her study is to examine the relation between mindfulness and quality of life in individuals with rare neuroimmune disorders.

IRB # IRB-FY2024-136.

Her survey takes about 15 minutes to complete. Click this link to access the content information and the survey:

Qualtrics Survey | Qualtrics Experience Management The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

Tomorrow, 10th October, is world mental health awareness day. The mental health of children affects their families as well. We are publishing six new stories created by the mothers of children with mental health issues on

Patient Voices: My depression, your depression – Patient Voices Clinical depression is a chronic worldwide health problem. The World Health Organisation state that it is the leading cause of disability worldwide and a major contributor to the overall global burden of disease. Yet, little is known about what makes people vulnerable or resilient to depression.

Experiences of Covid-19 resonate across borders, just as the coronavirus does. In Norway lockdown affects emotional and physical welfare of citizens just as it does in any other country. "Lockdown" is at www.patientvoices.org.uk/covid.htm More digital stories of coronavirus times to follow.

We moved our digital storytelling workshops online to help staff, patients and carers reflect on, create and share their experiences of the Coronavirus lockdown. The first digital story - this one told by a consultant is now online. "Two-letter person" is at https://www.patientvoices.org.uk/covid.htm
More stories will follow as we help their storytellers complete them.

Patient Voices: Stories from the COVID lockdown – Patient Voices We have learnt, over two decades of digital storytelling in healthcare, that the are many stories to be told, shared and heard in any situation. As the COVID lockdown changed the way we work – shifting our focus from face-to-face to the online faciliation of storytelling – we determined to use o...

A couple of storytellers can't attend our next online digital storytelling course, which starts on Monday at 18:00 BST, so we have a couple of subsidised places available. If youve got a or story of -19 (or just want to make a story) DM me!

Over the last weeks, we've been working on new ways of storytelling that will allow storytellers to make and share stories of these COVID-19 days online.
These workshops are run as one two-hour session per week for six weeks. All you need is a laptop, an internet connection, and a story to tell.
The next online Patient Voices Reflective digital storytelling workshop in our program begins 1st June at 6pm BST.
To register, or get more info, either message us, or check out

Patient Voices: Patient Voices workshops – Patient Voices Now, more than ever before, we need stories. We need stories from all the ordinary and the extraordinary people waiting patiently to be heard. We need stories of courage and compassion, love and loss, triumph and tragedy, hope and resilience; stories of agonising uncertainty and the delightfully une...

Note this is US Eastern time....

[Special Webinar Today] Impact of Novel Coronavirus Pandemic on Mental Health Please Note: Due to high levels of interest, please access the webinar via your computer. If you are unable to access via your computer or prefer to dial-in via phone, please register for the 3:00pmET rebroadcast here.