PSSDNetwork Survey

Earlier this year, the PSSDNetwork conducted a survey on Reddit to better understand how we can engage the community. Below is a summary of the actions we are taking in response to the feedback we received.

Research Awareness

Of the people who completed the survey, over half (65%) were aware of the ongoing research efforts related to PSSD, 25% were somewhat aware, and 10% were not aware of any research related to PSSD. We are going to be raising more awareness about the research we are supporting, which is currently being conducted by Dr. Roberto Cosimo Melcangi and his team at the University of Milan. More details about how we do this are below.

Donations

Around 49% of those surveyed have never donated to research, with the main reason being financial constraints. We are going to continue our efforts to raise awareness of the $8 on the 8th campaign as we believe this is an accessible way to contribute. Some people commented how despite being on a low income they felt $8 a month was achievable, and found it motivating to see everyone else joining in by posting their donation receipt on the PSSD subreddit. As PSSDNetwork continues to fund research, and as more studies are published, we will raise greater awareness about the condition among the medical community, and researchers will eventually be able to apply for grant funding.

Interview with Dr. Roberto Melcangi

After financial constraints, the second most popular reason for not donating was skepticism of current research efforts. Many of the people surveyed wanted to hear from Melcangi himself regarding the research he is doing for PSSD. We are currently arranging a date to record an interview with Melcangi. Once we have a date secured, we will send out a form on the PSSD subreddit to ask the community to submit their questions to Melcangi.

Volunteering

The majority of people who completed the survey have not volunteered in activities related to PSSD awareness. The biggest reason was because of privacy and stigma concerns followed by lack of information about volunteering opportunities. Many of the volunteering campaigns can be completed anonymously without needing to show your face. To build your trust, we have nominated two people you can contact, Nick and Ben (more details in the upcoming volunteering page), who can talk to you about volunteering (over video call, email or Whatsapp). If you prefer to talk to a female, let us know by submitting a request to join a community support group via the ‘Join Our Community’ page.

Some people were concerned about the amount of time needed to contribute to volunteering. Most of the volunteer campaigns do not require much time. You are able to contribute as much time as you want, from as little as 5-10 minutes a week to much longer for our in-depth projects. Some people also felt volunteering wouldn’t make a difference. We are going to make a concerted effort to track and highlight all the success stories of volunteering to our community. Our volunteers have achieved a lot, below are some recent success stories.

Volunteering success stories

A PSSDNetwork member leveraged their personal connections to inquire about potential coverage of PSSD in the Finnish media. Their efforts resulted in the publication of articles in Helsingin Sanomat and Voima, effectively raising awareness of the issue within their country.

After observing the activism on X (Twitter) and TikTok from PSSD sufferers, journalists from The Guardian, The New York Times, and The Daily Express US contacted the PSSD Network. A group member coordinated interviews with multiple PSSD sufferers, resulting in the personal stories of the Network’s members being shared with millions of readers.

The PSSD Network has also partnered with psychiatrist Dr. Josef Witt-Doerring to produce a series of interviews about PSSD for his YouTube channel. Dr. Witt-Doerring has interviewed several PSSD Network volunteers. He has also filmed videos with Dr. Amy Pearlman and Dr. Irwin Goldstein, as well as psychiatrist and author David Healy. Dr. Witt-Doerring remains an important ally in sounding the alarm on the harms of antidepressants.

A Network volunteer sent an email about PSSD to psychologist Dr. Roger McFillin. She was able to arrange an interview on his show with PSSD sufferer Emily Grey and therapist Yassie Pirani. Since recording this podcast episode, Dr. McFillin has become one of the biggest advocates for PSSD sufferers.

Our advocacy is sparking important conversations in the media. For example, columnist Freya India appeared on the podcast Gender: A Wider Lens to discuss PSSD. India has played a big role in PSSD advocacy, with articles aimed at Asexuality being linked to PSSD cases. She continues to question the safety of minors taking antidepressants.

Initiatives such as “Faces of PSSD” on the PSSD subreddit have also helped increase activity and gained hundreds of upvotes. Although this initiative took place in 2022, Faces of PSSD encouraged Redditors to share their faces and their stories, enhancing feelings of connection within the community.

the survey highlights that people feel isolated and need more support

Whilst people cope with PSSD in different ways, we have developed a list of coping strategies that people with PSSD have found helpful. There will be an upcoming Living with PSSD page. We are also hosting a support group for sufferers via Zoom. We understand that being able to talk to others who also have this condition can be helpful to feeling less isolated. If you would like to join our weekly support group on Mondays at 18:00 BST, please submit a request via the ‘Join Our Community’ page and specify that you would like to join the PSSD Zoom calls.

Research Donations Update

Thanks to all of our generous donors, we reached our research funding goal of 80,000 USD in April 2024. This has been achieved within just 10 months of PSSD Network becoming a registered charity in June of 2023. This is an incredible effort from our community, thank you all!

In February 2024, we transferred more of the research fund to the University of Milan to support Dr. Melcangi and his teams research into PSSD. We also just transferred more recently, below is the receipt. We plan to transfer more shortly.

Dr. Melcangi and his team are looking to submit more papers on PSSD for review within the next couple of months. We will update the website as soon as these papers have been published. Should the opportunity arise to fund alternative promising projects, we will eagerly seize it.

Thank you to everyone who has donated to the marketing campaign!

Together with media coverage, the marketing campaign is helping to raise the profile and awareness of PSSD.

Growth This Year

2024 has been a busy year so far for PSSD, with the recent FDA lawsuit and the addition of PSSD in the Australian side effect labels. There were also articles in major media outlets such as The Guardian, Daily Mail (multiple times), The Telegraph, and The Australian.

The PSSD subreddit, which had around 10,600 subscribers at the beginning of the year, has now grown to 12,800 not even halfway through 2024!

We've also seen a significant increase in website visits so far this year. Below is our website traffic from January-June 1st. As a comparison from June 2023, we only had around 7,000 monthly visitors. Less than a year later in February 2024, we surged to over 50,000 visitors. This proves that the news coverage, marketing, and social media campaigns have been working!

Along with an increase in website traffic, we’ve also seen more traffic throughout the subreddit. A member of PSSDNetwork posted about the FDA lawsuit, which reached 35,000+ views and 300+ upvotes. So as we have many others outside of our community viewing the subreddit, please try to keep the forums as friendly as possible.

Through hard work, the PSSD Network TikTok account has reached almost 6,000 followers and surpassed 80,000+ likes. The pinned videos have received nearly one million views!

Medical Recognition

PSSD has officially been listed in The Maudsley Deprescribing Guidelines, which helps to legitimize the condition among practitioners. These guidelines are used by a wide range of mental health professionals involved in prescribing medications, and are used in various countries, including the UK, USA, Canada, Australia, New Zealand, and Japan.

SNOMED codes (Systematized Nomenclature of Medicine Clinical Terms) are used worldwide in electronic health records. SNOMED has now added code 1285639002 'Protracted antidepressant withdrawal syndrome (disorder)' to its system. If you reside in a country that uses SNOMED, your doctor should be able to have this code added to your medical record. This is a step forward in getting formal recognition for PSSD, and research funding justification. It is hoped that there will be a separate code for PSSD in the near future.

Thank you!

PSSDNetwork Is Run By a small number of volunteers, who all have PSSD.

our impact would not be made possible without them.

Together, their efforts highlight what ordinary people can achieve together.

If you're interested in contributing to awareness or other efforts, please reach out to us here.

June 2024 Update