Changes to propeciahelp towards a more effective patient advocacy: Please read this important post about changes to our terms of service

Dear fellow PFS patients,

Following significant progress towards scientific study and awareness, we have decided that the time is right to make some changes in the service that Propeciahelp offers.

Significant steps towards progress

The response following the announcement of our latest awareness campaign and research opportunity has been overwhelmingly positive. We sincerely thank those who have taken small but significant action, whether it be a donation or commenting and liking our podcast series. We have now raised over €53,000 in just over 2 months - beyond our expectations.

These actions, though often small, are of great importance. Thankyou.

Over the years, our team has maintained that modest, manageable action from a unified community is how we turn this issue around. The momentum created by our latest campaign validates this approach. We now have a legitimate awareness footprint which accurately characterises the disease. Large media outlets are interested in telling our story in a meaningful way. And most importantly, world-leading researchers with appropriate expertise are interested in investigating the disease.

Thanks to these efforts, the past year is one of the most significant in PFS history.

These results did not just come about by haphazardly pursuing “ideas”. The scientists did not become involved because of a patient’s 10 paragraph theory about what they believe PFS is. They were possible due to collaboration, action and hard work.

It has been heartening to witness the change in attitude on this forum since the announcement. Patients have commented they feel a sense of togetherness, action and organisation. Many have come forward to speak publicly, run a mini-fundraiser, or simply ask how they can help.

We now need this attitude to permeate throughout the entire community.

To find a safe and effective treatment, this forum, and our community culture, needs to change

The moderator team is no longer just a group of patients providing a support forum. We are now a charity with real impetus, and our urgent concern is progressing scientific understanding so a safe and effective treatment can be identified as soon as possible. Thanks to actions over the past year, everyone can be a part of this.

It’s important to realise however that we will not get there automatically. We must transform from a fragmented collection of alternative health groups to a supportive, thoughtful and cohesive patient community.

That will not be possible unless we change our current behaviour.

There is no value in creating more two paragraph theories about what PFS is or recipes for hormone cocktails. Dogmatically pursuing self-medication and “recovery” through the blinders of survivorship bias is clearly not working. The answers to this disease will not be found in the same circular discussions that have taken place on this forum for 15 years. Too often these discussions centre on what PFS is, or proposals for how to treat it, usually with little to no connection to the clinical specifics, existing research or scientific concepts.

We now need less words and more action.

Our team can’t perpetuate this behaviour alongside pushing for cutting edge scientific investigation of the real problem in the real world. We cannot push for awareness while we also host forum posts that contradict the patient record, medical literature or scientific concepts. The two things are incompatible.

We make no defence for how the clinical frontline has failed us: the situation as it stands in 2021 is the result of doctors ignoring clear and serious adverse event reporting, and gaslighting those seeking help from them. However we hope patients can acknowledge the tangible progress created on multiple fronts and realise they are now not alone. We will continue to be a powerful advocate for patients and push to identify disease mechanisms so we can find a safe and effective treatment for all.

In order to be successful we must change how we collectively participate in this community, engage with others, and notably, what this forum can offer patients.

What is changing specifically

If you have an interest in a therapy you think will help with your personal symptoms, we are now asking for patients to report it in their member story using the new self-reporting template. Posts not adhering to the reporting form will be removed and an automated message will be sent to use the form instead. An example of the template, where it can be found, and how to use it, can be found below this post. The post will also be pinned in the Member Stories category. We are looking into more automated ways to use the form, but for now, there are some manual steps required.

As PFS patients have different tissues affected to different extents, the context of self reports must be that patient’s own symptoms and situation. Some patients have a few functional problems, others have significant physical atrophy and changes. Some have developed the condition dramatically after a dose, others have far less severe situations after many years of exposure. It’s an enormously variable situation.

This system will improve the quality of discussion around self reporting for those interested.

Keeping a patients experience with therapies coherently within their own story, and formalising the reporting process, will provide a clearer frame of reference for what that individual was experiencing and how their personal situation was changed by an action or taking a substance. It should also help with searchability.

To be clear, we are not banning patients from reporting attempts to find therapeutic relief.

We understand that patients are driven to take action out of desperation.

We want patients to understand that attempts to find therapeutic relief do not need to be accompanied by a personal theory. We hope patients recognise they are now not alone, and instead we will find answers through effective scientific progress.

Alongside this, several other changes will be implemented:

  1. Older posts reporting self-experimentation with certain substances will be closed. Patients are asked to continue sharing their experience using the provided template in their member stories.
  2. The longstanding Propeciahelp terms of service will be enforced more rigorously. If you are not familiar with the terms, please get up to speed: https://forum.propeciahelp.com/faq. Some new terms have been included so old members should familiarise themselves also.
  3. Staff notes will be applied liberally to any posts which are not breaking the rules but are deemed to be misleading, incoherent with medical literature and self-reports, or dangerous. These notes will appear at the top of posts.

These changes have the potential to cause confusion. Please see below for examples of common use cases and how they will be moderated moving forward.

Examples

I’ve experimented with abc substance and it had xyz effect on me

If patients are interested in trialling a therapy they think may be beneficial for them, they must do so using the self-reporting template in their member story. Do not accompany your post with a lengthy theoretical essay about why you believe this treatment has helped you.

If you wish to notify patients in other topics about your own experience, please direct them to your member story. Please do not create new topics to direct patients to your member story.

I’ve heard about supplement/treatment xyz - has anyone else tried it?

These posts are still acceptable to create, but before doing so, please consider these posts will no longer be allowed to exist as circular discussions about why supplement/treatment xyz may work, how to specifically implement the treatment, or to discuss individual experiences.

Patients responding to these topics are asked to only direct OP to their member story where they discuss their experience, and a brief explanation of their experience if necessary.

For example, do not say:

“I have tried treatment xyz and it helped improve my symptoms for 3 days signficantly followed by a decline and then a bounce back to my baseline. I believe this happened because 5-alpha reductase has been…”

Instead, simply say:

“I have tried treatment xyz - you can learn about my experience in my member story: [link]. To summarise, I had a good experience but it didn’t last.”

Substance/treatment xyz

These posts are slightly different than the example above. Patients are usually bringing others’ attention to a new substance or treatment, or one that hasn’t been trialled before (or extensively) in the patient community. These posts typically involve a patient starting a post to document their own experience, and contain theorising about why the treatment will work.

These posts are unacceptable and will be deleted. The patient will be sent an automatic reply asking to please document their experience in their member story.

I believe supplement/treatment xyz could cure PFS - here’s why

These posts are a breach of our terms of service and will be deleted. Not only are these topics not contained to a patient’s own experience and member story but they also breach our rule about personal theories and speculation.

Discussions on member stories

Please note the lengthy discussions previously held in topics about xyz substance or treatment will not be permitted to continue in patients’ member stories. Basic questions are acceptable, for example:

“How are you doing now?”

“When did you last take substance/treatment xyz”

“Did you take xyz brand of substance”

However, please refrain from asking questions which will be addressed in the self-reporting template:

“How often did you take substance/treatment xyz”

“What dosage of xyz did you take”

“What effect did xyz have on symptom abc”

I have symptom xyz - does anyone else have this?

These topics can often become derailed with suggestions from other patients recommending substances or treatments they believe will help OP.

Moving forward, these topics are still acceptable and will not be deleted. However, please note these topics will be watched more closely by staff:

  • If the original post includes a request for treatment suggestions, that request will be edited out
  • Patients cannot reply to these posts with suggestions for substances or treatments

If you are experiencing or have experienced the same symptom, you are welcome to respond to OP and share your experience in coping with the symptom or how it has affected you. Please do not suggest treatments. Instead, direct the patient to your member story with a brief explanation of your experience. For example

“Yes, I’ve experienced tinnitus and it’s absolutely awful. It made my job unbearable which has had a huge impact on my life. I have tried several things to help the situation and had varying experiences with each. You can read about them in my member story: [link]”.

Need help with xyz symptom

Please see the example above.

Has anyone crashed from xyz?

Patients often want to know whether others have had a negative experience by experimenting with a particular substance or treatment. These topics are still acceptable and will not be deleted.

However, please note these topics will be watched more closely by staff:

  • If the original post includes a request for treatment suggestions, that request will be edited out
  • Patients should not reply to these posts with suggestions for substances or treatments

Patients responding to these topics are asked to only direct OP to their member story where they discuss their experience, and a brief explanation of their experience if necessary.

For example, do not say:

“I’ve trialled xyz substance and it crashed me badly for over a week because of the way it interacts with DHT and my progresterone levels which I believe are caused by…”

Or

“Don’t listen to whatever others here are saying, xyz is the key to PFS recovery and you just need to be positive and keep going, even if you crash that’s just your androgen receptors re-sensitising…”

Instead say

“I’ve taken xyz before and I did/didn’t have a good experience. You can read more about it on my member story: [link]”.

I’ve done my research and PFS is xyz

Please see our terms of service: https://forum.propeciahelp.com/faq#theories This rule will be enforced strictly moving forward.

Please also note that staff notices will be applied to any discussion which is not coherent with medical literature or patient record, is misleading or mischaracterises scientific concepts.

You wouldn’t have PFS if you did xyz and tried harder

Please see our terms of service: https://forum.propeciahelp.com/faq#be-agreeable This rule will be enforced strictly moving forward.

Xyz worked for me, you should try it with this specific treatment plan

Please see our terms of service: https://forum.propeciahelp.com/faq#theories This rule will be enforced strictly moving forward.

Check out xyz substances, they really worked for me!

Please see our terms of service: https://forum.propeciahelp.com/faq#theories This rule will be enforced strictly moving forward.

Supportive, thoughtful, cohesive

Our goal with this platform is to create a community where any patient can find support and cope, while also contributing to patient advocacy.

We encourage patients to talk more about their lives and the challenges in them. Create a topic about a new show you’ve watched, a book you’ve read or something you saw in the news, rather than a new theory about what PFS is and how you’re treating it.

Reach out to our team to get involved if you are able. Speak publicly. Talk to your friends and family about your situation. Support research and encourage others to. Report your symptoms to regulators. If you have a good idea on how we can move the issue forward, reach out to us!

These are the modest and manageable actions that will help us and continue to turn this issue around. The potential benefits of having hundreds of patients moving in the same direction are enormous. Understanding of disease mechanisms, meaningful awareness and validation - will all become much more attainable.

We encourage patients to view these changes as an opportunity to contribute to our success as a community. This is a fork in the road for how we can, or cannot, make progress towards meaningful scientific progress and awareness, the only path that can move us all forward.

Thank you,

PH team

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This self-reporting form must now be used to report your experience with any attempted treatments, including hormone therapies, diets, lifestyle changes, or any other substances. If you are interested in why we have implemented this change, please read above.

Posts not adhering to the reporting form will be removed and an automated message will be sent to use the form instead.

You can locate the form two ways:

  1. If you created your member story before the 11th of January 2022, you can copy and paste it from below. This post will also be pinned in the Member Stories category.
  2. If you created your member story after the 11th of January 2022, the form was automatically populated in your original post below the member story template.

To use the form, simply copy and paste it into a reply to your member story and fill in the details. Do not create new posts in the Member Stories category, or any other category, to use the form. Do not theorise as to why your attempted treatment may or may not have worked. Do not prescribe the treatment to others.

Please do not include multiple forms in the same reply. If you have experimented with multiple treatments at the same time, please create separate replies using the form for each. You may include some context around your attempted treatment(s), but please keep it brief.

Self-reporting form

  1. Name of the therapy/substance: _____

    • Dosage: ___
    • How often you took it: ____
  2. Status

    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]

  4. Response when you started:

    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using) OR Response in the time before you stopped the treatment

    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)

    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
4 Likes

While I understand the motivation behind this, both in the name of protecting patients from taking dangerous substances as well as focussing people on research initiatives rather than improbable theories, I think removing the wealth of past experiences of patients who are no longer on the forum, or for that matter, with us, is a poor as well as dangerous plan.

This forum is realistically the single and only record PFS sufferers have of other sufferer’s experiences.
Deleting or hiding past accounts is not in the community’s best interests for two main reasons:

  1. Censoring will not patients from self-experimenting.
  2. By censoring past accounts patients who are intending to try to improve their lot through taking substances will be unable to do their due research and decide on whether the risk is worth them taking.

If patients want to experiment no individual or group of individuals should deprive them of the resources to make that decision, regardless of good intent.

8 Likes

The posts will not be hidden - they are still accessible. They will just be closed for further commenting.

9 Likes

We should have done this long ago. Good poster.
we need a nuclear bomb to fuck PFS, rather than open the broken warehouse and turn out a pile of garbage such as BB guns. If we can’t recognize this, the enthusiasm of patients will be exhausted. Time, money and energy are extremely precious. Let’s focus on doing more meaningful things and get out of this black hole as soon as possible👊

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Be like @baitongWu.

Let’s build a nuclear bomb, not throw a pile of garbage at our enemy.

5 Likes

Agreed 100%

1 Like

As long as these posts are still visible I have no problem with these changes.

But I have one question, if people want to share a recovery story can they still make a thread about it? Or can they only post this in the self-reporting form? If so can everyone see when a member filled in this form? Is there some notification we all get?

Because otherwise people might miss updates or possible new recovery stories.

Also is it still possible making threads and talking about experimental treatments?

1 Like

Please have a read of the examples under the dropdown menu, that should answer your questions.

Okay so when someone makes or update his form will we get a notification in the dropdown menu? I see “new”, “unread”,…

In what category will these come?

If you have previously replied to that user’s member story or clicked the bell icon, then yes, just like any other thread. They will all be contained to member stories moving foward.

1 Like

Hello all,

I am bumping this thread as there have been several instances overnight of threads needing to be closed as they are not following the new rules.

Please familiarise yourselves with the FAQs and use the new form. If you have any questions, please ask.

Thanks,
Mitch

The text is formally well written, but too long and complicated.
You have to explain this if we are like childs, if not is going to be understood.

The post provides important context for why the changes have been made, so it is necessary for it to be long. It also provides clear examples of what is changing and why.

If we don’t explain why the changes are being made, we’ll receive dozens of responses asking “why did you change this?” or “can we still do this?”.

Many patients spend hours every week reading articles, asking questions or drafting their own long posts. I don’t think it’s unreasonable to ask people to spend 10 minutes reading something which explains important changes to the terms of service.

Mitch,

There are additional features removed that i don’t understand at all.

Why the markers of F, D, S, I regarding each drug an user took has dissapeared?

They were awesome to track the demographics of the site.
You could perfectly define the incidence and the tendency of new users!

Why is not being forced anymore to publish a member story after a user register?

Why we are not using anymore the surveys and enforcing them?
These were also a powerful tool.

  1. This a bug with the forum software we use, Discourse. As that feature is a plugin, it’s out of our control and needs to be updated by whoever created it. We’ve raised a ticket with the Discourse team.
  2. This is still occurring. New users are automatically on post-approval and cannot post until they have created a member story. That has never changed, however we may have been more relaxed with the enforcement of it over the past few months as we focused on getting our research project and awareness campaign.
  3. The survey is closed and we are considering how to best use the data. Due to time and resource constraints - myself and axolotl are extremely busy with fundraising, liaising with scientists and awareness work - it’s been put on the backburner. The survey was extremely useful, however, in informing upcoming research and helping researchers understand the problem, so it was a very valuable exercise. We thank you for participating.

Hope that helps with your questions.

Thank you for your elaborated answers Mitch.

As far as of the Survey, I don’t know if it is time consuming to just leave it there active while keeping growing the database

But we are losing the opportunity to increase a lot the N of reports.
Each month there is an average of 25 new users (Finasteride alone).
If forced, we are talking about 300 reports per year (again, only considering just Finasteride).

That is an opportunity to track and keep growing the most biggest database ever.

If you want to convince researchers or someone else, a big growing database that shows incidence and profile is a must.

Thank you for your feedback!

I understand your enthusiasm for the survey - and it is appreciated - but it was very difficult to get users to complete it at all. I personally spent hours every week commenting on threads just asking users to complete it.

The hard part in getting researchers involved is now over, fortunately. We have some amazing ones on our side who have the appropriate expertise to figure out the mechanisms involved.

Now we just need to make sure they are funded.

1 Like

Bumping this topic again for anyone who hasn’t read it yet.

Please do so and familiarise yourself with the terms of service.

1 Like

Hi all,

Thanks to those who have used the new self-reporting form over the last week. It’s been encouraging to see members making use of it to help standardise how we report experiences with different therapies.

We understand this is a big change, so we’ve tried to provide context on why we’ve made the change if we have edited or deleted a post. If you have concerns about a post we’ve edited or deleted, our door is open, so please just send me or the moderator a PM. We’re happy to discuss.

We also understand patients don’t login daily so we’ll be bumping this thread weekly as a reminder.

I’d also encourage you all to check out the examples we’ve provided on what is ok vs what is not under the changes.

Examples

I’ve experimented with abc substance and it had xyz effect on me

If patients are interested in trialling a therapy they think may be beneficial for them, they must do so using the self-reporting template in their member story. Do not accompany your post with a lengthy theoretical essay about why you believe this treatment has helped you.

If you wish to notify patients in other topics about your own experience, please direct them to your member story. Please do not create new topics to direct patients to your member story.

I’ve heard about supplement/treatment xyz - has anyone else tried it?

These posts are still acceptable to create, but before doing so, please consider these posts will no longer be allowed to exist as circular discussions about why supplement/treatment xyz may work, how to specifically implement the treatment, or to discuss individual experiences.

Patients responding to these topics are asked to only direct OP to their member story where they discuss their experience, and a brief explanation of their experience if necessary.

For example, do not say:

“I have tried treatment xyz and it helped improve my symptoms for 3 days signficantly followed by a decline and then a bounce back to my baseline. I believe this happened because 5-alpha reductase has been…”

Instead, simply say:

“I have tried treatment xyz - you can learn about my experience in my member story: [link]. To summarise, I had a good experience but it didn’t last.”

Substance/treatment xyz

These posts are slightly different than the example above. Patients are usually bringing others’ attention to a new substance or treatment, or one that hasn’t been trialled before (or extensively) in the patient community. These posts typically involve a patient starting a post to document their own experience, and contain theorising about why the treatment will work.

These posts are unacceptable and will be deleted. The patient will be sent an automatic reply asking to please document their experience in their member story.

I believe supplement/treatment xyz could cure PFS - here’s why

These posts are a breach of our terms of service and will be deleted. Not only are these topics not contained to a patient’s own experience and member story but they also breach our rule about personal theories and speculation.

Discussions on member stories

Please note the lengthy discussions previously held in topics about xyz substance or treatment will not be permitted to continue in patients’ member stories. Basic questions are acceptable, for example:

“How are you doing now?”

“When did you last take substance/treatment xyz”

“Did you take xyz brand of substance”

However, please refrain from asking questions which will be addressed in the self-reporting template:

“How often did you take substance/treatment xyz”

“What dosage of xyz did you take”

“What effect did xyz have on symptom abc”

I have symptom xyz - does anyone else have this?

These topics can often become derailed with suggestions from other patients recommending substances or treatments they believe will help OP.

Moving forward, these topics are still acceptable and will not be deleted. However, please note these topics will be watched more closely by staff:

  • If the original post includes a request for treatment suggestions, that request will be edited out
  • Patients cannot reply to these posts with suggestions for substances or treatments

If you are experiencing or have experienced the same symptom, you are welcome to respond to OP and share your experience in coping with the symptom or how it has affected you. Please do not suggest treatments. Instead, direct the patient to your member story with a brief explanation of your experience. For example

“Yes, I’ve experienced tinnitus and it’s absolutely awful. It made my job unbearable which has had a huge impact on my life. I have tried several things to help the situation and had varying experiences with each. You can read about them in my member story: [link]”.

Need help with xyz symptom

Please see the example above.

Has anyone crashed from xyz?

Patients often want to know whether others have had a negative experience by experimenting with a particular substance or treatment. These topics are still acceptable and will not be deleted.

However, please note these topics will be watched more closely by staff:

  • If the original post includes a request for treatment suggestions, that request will be edited out
  • Patients should not reply to these posts with suggestions for substances or treatments

Patients responding to these topics are asked to only direct OP to their member story where they discuss their experience, and a brief explanation of their experience if necessary.

For example, do not say:

“I’ve trialled xyz substance and it crashed me badly for over a week because of the way it interacts with DHT and my progresterone levels which I believe are caused by…”

Or

“Don’t listen to whatever others here are saying, xyz is the key to PFS recovery and you just need to be positive and keep going, even if you crash that’s just your androgen receptors re-sensitising…”

Instead say

“I’ve taken xyz before and I did/didn’t have a good experience. You can read more about it on my member story: [link]”.

I’ve done my research and PFS is xyz

Please see our terms of service: https://forum.propeciahelp.com/faq#theories This rule will be enforced strictly moving forward.

Please also note that staff notices will be applied to any discussion which is not coherent with medical literature or patient record, is misleading or mischaracterises scientific concepts.

You wouldn’t have PFS if you did xyz and tried harder

Please see our terms of service: https://forum.propeciahelp.com/faq#be-agreeable This rule will be enforced strictly moving forward.

Xyz worked for me, you should try it with this specific treatment plan

Please see our terms of service: https://forum.propeciahelp.com/faq#theories This rule will be enforced strictly moving forward.

Check out xyz substances, they really worked for me!

Please see our terms of service: https://forum.propeciahelp.com/faq#theories This rule will be enforced strictly moving forward.

Thanks for your help in improving the service we offer to all PFS patients.

3 Likes