Dear fellow PFS patients,
2021 is shaping up to be perhaps the most promising year for PFS research and awareness ever.
While the moderator team are pleased with the progress made since we addressed the forum in December, it is still entirely unacceptable that there remains a stark lack of clinical understanding of this debilitating disease.
No patient should have to feel unheard by their clinician when explaining their devastating symptoms are caused by a supposedly safe cosmetic drug. No patient should have to suffer for months, years or even decades. No patient should have to take their own life because suitable treatment options do not exist.
While this painful reality remains for now, we are taking important steps to increase understanding and awareness of our problem.
Over the past two years, we have taken advice from over a dozen scientists to weigh up what and who we can endorse as the most practical offers to further investigate our condition. This in itself is no small feat.
We are pleased to announce that we are intending to support two opportunities designed by leading researchers that we would be very excited to have involved in investigating PFS further. The first will be a lower cost study, in the mid-five figure range, that we hope to begin fundraising for in the summer so we can hopefully begin later this year, and the admin team have already pledged a substantial amount of the funds required. The second will be a larger study and a longer-term fundraising goal. We are also thrilled that the PFS Foundation has agreed to support us by handling fundraising for this landmark endeavour. This will be dedicated fundraising and not affect usual donations to the Foundation, so donations should not be currently made for these coming studies. We encourage any patients who may be able to contribute large sums, whether directly or through their family, to get in touch directly via PM.
While we cannot provide specifics yet for several months, and a lot depends on the availability of the researchers, this is without a doubt a watershed moment in our long journey.
Our message as a team working hard over several years has been clear and consistent: there is no magic bullet for this complex condition and only by collectively taking small steps can we hope to find relief and peace from this disease that has taken so much from us all.
In recent times, these collective small steps have included developing the patient information pack to provide to clinicians, PFS being effectively noted on Wikipedia for the first time, and the development of our survey which has received over 400 responses, and will now be analysed and interpreted to provide the world’s largest dataset about our condition.
When we provided our end of year update, we outlined several immediate goals that were crucial in laying the groundwork for these upcoming studies. They were:
- Launch a new information site and social channels for PFSNetwork (pfsnetwork.org), our “parent” brand.
- Launch our first series of patient video stories on YouTube.
- Create the first-ever professionally made animated explainer video to quickly outline what PFS is and how it affects patients’ lives.
- Receive study proposals that we can support and fundraise for through our platform.
- Find a technical volunteer to help with the survey data analysis.
We are so pleased to have had success with these important efforts through the hard work of our team, and our community pulling together. This was a key aim of our organisation since 2018. Our new website, pfsnetwork.org has been live since Rare Disease Day (February 28th) and coherently presents the current understanding of PFS and the impact of PFS on patients’ lives in a clear way. Six patients spoke publicly about the devastating impact of PFS on their lives - we cannot thank those who participated enough - and we are thrilled with the message and quality of our explainer video.
To have received interest and potential for investigation from a number of high-calibre researchers is an overwhelming success for us. Our team has shouldered the burden of providing propeciahelp to patients for many years, at huge effort and cost. We could not support the first nor simply the most enthusiastic offers. Our team all have to be confident in the proposals, the scientists carrying them out, and how any donations from our community will be handled. Axo has a long-standing relationship with the Foundation, and with their help, we are all confident it’s time to move forward in this regard.
While necessary steps sometimes appear slow, we hope it is apparent there is a critical momentum that we hope will turn the tide on PFS understanding and awareness, and pave the way for a future where patients never have to face what we have alone.
Now, we must try to increase the pace of these steps.
For a long time, we expressed our concern that the investigation of PFS and the enthusiasm to do so could be left in the hands of very few doctors and scientists that do not account for or acknowledge the breadth of patient symptoms. Individuals may have strong opinions, but the fallout of this disease is shouldered by us. Any further delay in effective investigation is an increase in our burden.
It is important to note that our decisions have been informed by over two years of consultation with leading molecular biologists and centres. This is not a proposal we have pulled from a hat, haphazardly. Everything that will be pursued has been recommended to us by more than one accomplished scientist - independently - and builds on recommendations in the literature of PFS.
Please note the conversations were provisional, and one of the researchers is currently busy with projects until summer so we cannot make concrete promises or share details yet. I can say we deeply hope to finalise a patient cell focused investigation that will require the participation of patients who developed the syndrome relatively quickly and severely. It will correct inappropriate decisions by the investigators in the Harvard study.
Once we have received the study design proposal, hopefully by summertime, both PFSNetwork and the Foundation will present it to our community to begin fundraising. While we are several months away, it is important that we inform you of these coming proposals now. We are acutely aware of the damage suffered by PFS patients, and how it often costs us our lives, including our careers and financial security. Several of our admins are seriously disabled by the extent of the harm. We understand it is not easy to contribute large sums at short notice.
However, the moderator team have already pledged a substantial amount, so the study will be well underway. We encourage patients to begin thinking about what you, or your family, may be able to contribute when the time comes. The first study cost is relatively low. We are hopeful that we can raise the amount through our patient community, and they will be promoted with a clear progress banner where the current survey participation banner is.
Other projects: awareness above all
Since the launch of our new site, you may have seen me banging the drum about speaking publicly about your condition. I again implore every patient to ask themselves this simple question: “What is more important - my life or my anonymity?”
These kinds of complex and stigmatising issues are not resolved by the affected population remaining silent and anonymous. That is simply a fact. No one else will solve this for us. There is no doctor out there who will have an understanding that doesn’t yet exist, and no bureaucratic manoeuvre that can simply take care of this.
For years before I got involved I watched the community circle the drain with tenuous ideas, self-made pharmaceutical or alternative therapies that may prove effective for some but devastating for our worst affected, and constant new groups that most often completely disappear. Personally, it is frustrating to watch precious energy and time being wasted on fruitless endeavours that attempt to put a roof on a house before the concrete slabs have even been laid.
There is one incredibly powerful thing that every PFS patient who is persistently and badly affected can do, which is speaking publicly about what has happened to you. To support this, I am starting a new PFS video podcast that will interview patients, patients’ families or family survivors, and clinicians, in an effort to develop more awareness and a single source of well-presented content about the impact of PFS. We have already lined up the first guests for the series, and I am personally very excited to begin.
If you would like to speak, please reach out to me privately. I would like to again thank our four new brave patients - @Toughluck24, @teddy25, @pokertje and @FinDestroyedMe - who came forward last week. Your efforts are deeply appreciated.
You may also be aware that Tzinkman has been severely unwell over the past six months, and has sadly not improved. SkinDiesel is also badly affected and has not been able to contribute as he would like recently. So if you are enthusiastic and would like to contribute to our recent momentum, please reach out.
I must again reiterate the importance of collectivism in surmounting this formidable problem. Year after year effort is duplicated that distracts and disappears. As the admin team, we can’t always communicate our discussions publicly, for many reasons, so we appreciate that it sometimes feels like no progress is being made. But there are clear and beneficial ways to help right now. Please also sign up to the mailing list for PFS Network, if you haven’t already.
We have so much to look forward to in 2021, if we work together. For perhaps the first time in our history, there is real, tangible momentum on every front.