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.