Dear members,
Firstly, I’d like to wish you a happy and safe holiday season from our team. 
I am writing to update the community regarding our team and our plans moving forward.
In very sad news, our friend Tzinkman, who has contributed a lot to this community, suffered a dramatic worsening of his condition in September. He has been completely disabled by his PFS symptoms since. He has suffered further physical changes and cannot currently operate a phone or computer due to the severity of his neurological symptoms. He is a wonderful, dedicated person and a good friend to me. I am so deeply saddened by what he’s going through. I have been in regular contact with a member of his family caring for him and passed our thoughts.
After over a decade of contributions to the issue, Awor has stepped down from management of our site and team to concentrate on his personal life. He has contributed a lot to this issue around his own PFS symptoms, career and commitments. His past efforts inspired a lot of us to do what we can to make a difference, despite the odds. I’m sure you’ll all join us in thanking him for what he achieved and wishing him the best.
The current situation
As will likely be the case for many looking back at this year, we aren’t where we hoped to be at the close of 2020. It remains unacceptably rare that a patient can have a useful conversation with a clinical doctor about the serious physical, sexual and cognitive problems they are suffering following use of finasteride.
The lack of clinical awareness regarding PFS remains a catastrophic obstacle in the way of progress towards understanding the disease. It is critical that there is understanding of the clinical features and symptoms associated with this disease if practical progress is to occur.
We remain very interested in the outcome of the investigation that took place at Baylor college, but we are not aware of the current state of this project and simply have to see what comes of it - whenever that may be.
The proposals and hypotheses from the current slate investigating PFS, or proposing to, do not have our support. A lack of widespread clinical reporting has left the investigation of PFS, and the enthusiasm to do so, in the hands of very few doctors and scientists. We, as the largest patient organisation, and as patients, are increasingly concerned by this. The disease remains so poorly appreciated clinically that some theory-led directions - and requests for financing - are outpacing accurate awareness of what is happening to people. Meanwhile, we are left to deal with the reality of this condition on a daily basis.
Our plans for 2021
Although slow, the discussion around PFS is changing. Only yesterday, a friend told me that the available information was far improved as compared with when he had looked into PFS during my own crash several years ago. The condition being effectively noted on Wikipedia for the first time is a significant milestone, and I’m proud that one of our team was directly involved in updating this. The Reuters investigation into the obfuscation of unresolved adverse events was also an important expose. We have established productive communications with some important media outlets this year to build upon in the future.
It’s clear we need to significantly step up awareness efforts. It’s also clear, with regards to research, we need to establish and support projects that have the potential to provide important practical information that can be built upon effectively. We will focus on these goals in the coming year.
Propeciahelp has greatly expanded in terms of our team and our projects. Our main website is now not only serving patients, but also those seeking information about the condition. After much discussion, we have decided together that, to better serve these groups, we will create an additional “parent” brand and website for our work and outreach as an organisation. This will serve as a hub for our new social channels, and will provide quick and clear information to non-patients, such as doctors, researchers and journalists, who we will increasingly engage next year. Propeciahelp will remain the patient community platform and important record it is, and will be linked as such from this new organisation site. We additionally need to rework some technical aspects of PH to ensure more manageable operation now and in the future, so several of us will be working on that through the early part of next year.
As part of this new venture, we will soon launch a new YouTube channel and patient video series, thanks to the brave participants. Two members of the PH team and three members of the community have provided video stories, and we hope to encourage more. It’s really important these stories go out coherently together, not dotted around on multiple accounts. If you want to get involved in being a part of this important project and share your story alongside other patients, please see the guide here. If this is not something you are in a position to do but still want to share your story, we have a number of written submissions to be published on the forthcoming site and would also appreciate more submissions. Please follow the same guidelines as for the video submission, and message one of the team members listed with your story.
We have spent a very long time scripting a short “explainer” video to accompany the new video series. This succinctly introduces “what PFS is” in terms of how it can affect people’s lives, and the broad situation we are dealing with. We are currently engaging professional animators and funding this ourselves, so this should all be ready by the end of January. This explainer will serve to support the patient stories and provide a fast introduction to the condition in our outreach efforts. We are excited to get this out there, and for further video content.
The post-drug syndrome survey has been a great success in the collection of data, so thank you to everyone who has participated. It demonstrates key features of the condition and the multisystem symptom profile. Much of this is a world first, including the results from the patient satisfaction survey. This survey is something we are very proud to have achieved. We have a talented pair of new volunteers behind the scenes helping us technically, one who will help work with the data, and we will seek to make key decisions and produce information from the survey in the coming year.
With regards to research: Earlier in the year, I discussed our situation in depth with appropriate and accomplished molecular biologists. Both separately recommended a whole genome sequencing study specifically as the best place to start, stressing its breadth, neutrality, and the potential to provide key clues to what makes us variably different to asymptomatic users at a fundamental level. We had a positive conversation with an advisor to the foundation regarding a draft proposal I was provided, and it is something we will hope to resume organising as soon as practicable in the new year. The expertise of the involved scientists interpreting the data is critically important to get right. We want to get to the stage where we receive a well-designed proposal that we support and can bring it to the community to prominently fundraise for and hopefully make happen.
We appreciate the patience and I’m sorry things have been slow. After overcoming setbacks this year we are energised and confident that 2021 will be far more productive on the back of the groundwork we are working hard to lay down. We are a team managing many projects as volunteers. Everything takes a lot of time and effort. Many of us are very severely impacted by the disease we are trying to address. This is not an easy situation nor is it a simple problem.
Finally: A huge personal thank you from me to the staff who make the continued operation of this site possible, and my sincere best wishes to everyone battling this syndrome.
Axo