Request for Forum User Feedback
Posted , 7 users are following.
Hello,
We recognise that recent changes to the forums have not worked for all users. Therefore, we are now planning an update to improve users experience of the forums. As part of this we are requesting that you please add your requests or ideas that are your highest priorities as a reply to this discussion.
Once we receive a suitable number of suggestions we will put these into a survey where users can then vote for the change(s) they would most like to see in the update. Once we have the results we will do the required changes and share these with you for any comments before we release to the site to ensure we have got it right.
There are some things we cannot do such as removal of ads as they fund the site, reinstate emails for every post and reversion to old format of the site. All other constructive suggestions to improve the forums will be considered.
While we may not be able to do everything that is suggested in this update we will take note of users input in deciding priorities.
Thank you for your time.
Regards,
Patient
0 likes, 25 replies
beverly52803 Emis_Moderator
Edited
I'm not even sure what changes were made. You mean that we are not being notified of any new messages? That is the only change I've noticed: I'm getting no messages.
Someone sent me a PM today, otherwise I don't think I would have found my way to this page. Not even sure how to find it again.
I am totally thrown by any technical changes to any site. Hard enough to learn them the first time. I have no suggestions for changes as I truly don't know what's going on. Even what you posted isn't clear to me. Sorry. Luddite here.
My only suggestion is PLEASE KEEP IT SIMPLE.
sarb73328 Emis_Moderator
Edited
Despite ticking a box to ask to receive email alerts on new posts on forum, I am receiving nothing. Like Beverly here I am finding it difficult to trawl through the discussions I wish to follow and their updates as it is not easy to find them. A discussion I started seems to have disappeared altogether.
Can you reinstate email alerts?
suzanne25846 Emis_Moderator
Edited
It only dawned on me today that I was not getting any more posts. I do recall getting the email and I am appreciating the request now for feedback. Could you possibly send this feedback request to all users like you did when you sent the email to say we were only going to get PM please? I am sure many would appreciate it.
Would it be possible to be notified when a new discussion is started? If we want to stay engaged with the discussion we can at least find our way back to it via the initial email.
Thank you,
Suzanne
Guest Emis_Moderator
Edited
Honestly, I liked the notifications so I can review and respond to those that are most appropriate. Now, I can't even see who has written and have missed dozens of posts so I don't care for the changes. Did you make the changes to better track who is writing what and to whom?
Thank you.
sarb73328 Guest
Edited
eggbiscuit - I am totally with you. The forum doesnt work for me with these changes sadly and it has been invaluable for a long time. Our comments here don't seem to be being addressed by the moderator either!
Guest sarb73328
Edited
Hi Sarb,
Good to hear from you. No, this forum change is not at all user friendly. Sounds like something my employer would have come up with. We can always pm each other. I visited a "super-specialist" yesterday but learned nothing. She really didn't get it when I told her I had pain. That was Dr. no 9. Looks like I am in this fight with all of you lovely women on here who actually care and make suggestions. What a concept. How are you doing?
sarb73328 Guest
Posted
hi eggbiscuit. thanks for your reply. Really dont know whats going on with this forum as i am missing so much and have had no response to recent post i put on which is unusual. wish they would reinstate the email system. sorry to hear you are not getting the help you need. 'super specialist' ???? doesnt sound like it!
my LS is not painful at moment (just have buzzing on and off) but I have a new angiokeratoma (Diagnosed without examination because cant get to dermatologist) which is worrying me a little as it looks like a raised blood blister. I have also had more shrinkage it seems. I wont see a doctor until October.
Guest sarb73328
Posted
Hi Sarb,
I'm glad the LS is not painful. Where is the keratoma?
No this doc seemed not to be a specialist at all saying yes it's LS but LS does not cause pain... (since when?) . Said "take more gabapentin but gave no prescription even though I asked. Also asked about platet rish plasma and she knew of it but said it wasn't "standard of care" (yes, I know but it seems to help) and then said I would have come for injections every month. She doesn't understand that the PRP can possibly heal the inflammatory skin damage. All she offered was "Go to physiotherapy" which I can't do. Is Covid the reason you can't see a doctor until October ? This whole issue is hurting a lot of peoples' options to get the care they need.
sarb73328 Guest
Posted
hi eggbiscuit - sounds like you know a lot more than your specialist. It is infuriating that they don't seem to listen properly to the patient - you are clearly not making up the pain. And how can physiotherapy help?
Keratoma is on side of vaginal entrance. I have had them before but not in that place. And yes, derm clinic here in UK is still closed due to virus.
Guest sarb73328
Edited
Hi Sarb, I guess our problems are not considered "essential" illness for which treatment is necessary. Both dermo and last gyno say physiotherapy by stretching allthe tissues down there will relax the nerves as they think that is what is causing pain I keep telling them, it is not nerve pain, I've had that before and know how it feels and this is not nerve pain. I tell them it's superficial, the surface of the skin is what hurts. They seem to think stretching the vagina and whole area will help the superficial skin pain. Someone I spoke to told me the "therapy" was so painful she had to come home and go to bed for 2 days. From what I've read, the problem is in the epithelial structure of the skin that has lost cells. There's a vacancy in one of the top layers where the cells have just gone away. That doesn't sound like a nerve problem. Question becomes, why have the cells gone away and what can we do to fix it? That might explain the pain but why, then, are the tissues white?
sarb73328 Guest
Posted
hi eggbiscuit - thats the million dollar question there then and no one knows the answer it woukd seem. The physiotherapy sounds drastic and I can see its very unlikely to help you. You must be so frustrated and low with this. Pain is the most exhausting thing and to get no relief must be horrendous. I have only had itching and buzzing. You're right, our disease is not considered a priority and I guess all you can do is to keep researching for yourself and persistence to try to make doctors understand what you're experiencing. I have found most doctors attitudes casual to say the least. There must be more that can be done. Keep me posted and good luck.
Guest sarb73328
Edited
Yes, no to the physiotherapy plus who wants to spend $3,000 to be "manipulated in front of strangers...." I have checked out some Chinese medicine. They say to use Stemona and Sophora root so I am going to check it out. They believe that the root cause of LS is "liver congestion." Hmn. Have to figure that out too. Is your liver congested? How would we know? Somewhere on here I found another topical preparation called Saginel Gel. Have you heard of it? Supposedly made in Italy... Yes, I am exhausted and so ready to be done with it all. Have lost most of my friends because I can't go and do like they can.
How have you been doing lately? What, f anything, do you put on those affected areas? Has there been any change in the keratoma? Be well.
sarb73328 Guest
Posted
Physio sounds excrutiatingly painful and embarrassing, don't go there.
I hope the chinese medicine is helpful, definitely worth a go. interesting about liver congestion. Many years ago a test showed I had fatty liver (my love of dairy foods doesnt help) and doctors queried my alcohol intake but although I drink, units aren't that high. I can see that a healthy liver must help with LS, it is such an important organ. Haven't heard of saginal gel - let me know how you get on with it if you get some. My go-tos are still borax, emuaid, cetraben, castor oil with turmeric and coconut oil for soothing and moisturising. Oestrogen cream 3 times a week and betnovate steroid ointment twice a week. At the moment all is stable and there is no change to the keratoma. We have managed to get to our boat in France so I am happily relaxed which helps as we all know.
stay safe and keep well x
Guest sarb73328
Edited
Sarb- Your reply was found in a bunch of ads, or "promotions." So obviously they have screwed this system up. Otherwise, I would have answered you before today. Oh, where in France? Nice? Was there years ago. Charming place. I checked out the Chinese "liver congestion" diagnosis but I have none of those symptoms. None at all.. Asked a Chinese colleague if he could recommend a good practitioner but he could not. So, searching for that. I drink a little too but my liver functions was normal last time. One article said LS sufferers make antibodies to the extracellular matrix protein and that's what they "think" is a big problem. Strange how nobody knows after what, 100+ years of this? So I am researching extra cellular matrix protein. Didn't realize I was going to have to be my own doctor. I can't get Cetraben I don't think. How do you mix the castor oil with the turmeric or are they applied separately? Weather here beastly hot. Two inches rain in 30 minutes. Enjoy the boat!
Emis_Moderator
Edited
Hi all,
Thank you for the comments. We are reviewing the status of emails for new discussions and all replies in discussions with a mind to reinstate. In the meantime you can see all of your notifications on this page https://patient.info/forums/me/notifications. I have also requested that this page is improved with discussion titles and snippet text of posts etc.
Re - Did you make the changes to better track who is writing what and to whom?
No, the changes were made due to the number of emails we were sending out that were not being opened or clicked - > 3 million a month of which approx 500 were opened.
If there are any other suggestions to improve the site please post. I may not reply immediately due to other work but I am keeping an eye on all feedback.
Regards,
Alan
Guest Emis_Moderator
Posted
Dear Alan,
This is Egg Biscuit in the US. Thank you for the response. I understand wanting to change a system with the click to open response rate you were getting. 500 out of 3 million is less than 1 /100th of a percent. Could you send a notice to people that, if they don't "activate" their account in 30 days they will be deactivated? Some email systems do that. Banks are doing it and taking people's money. Can you steer all those in 1 particular group to be isolated in a group through some kind of chart? Just my two cents. Wish I could help more.
sarb73328 Emis_Moderator
Posted
Alan - the forum no longer works for me. I used to get email notifications of every new discussion and whenever I posted I got a response. Now you have to trawl through notifications and it appears most new posts have no replies which suggests no one ever sees them.Please put it back to how it was - does it matter that a percentage of people dont click their emails?
Guest sarb73328
Edited
Hello Alan,
Is cost a factor in making this change? Is the inactivity using more bandwidth and so, the reason for changing is less bandwidth and therefore lower cost?
Maybe there's another way around it?
biscuit
sarb73328 Guest
Posted
eggbiscuit - Beverly has PM-ed me to point up that we are discussing our problems on this technology thread which clearly isnt right. I will PM you for the time being but its frustrating that our forum doesnt appear to work anymore.
Guest sarb73328
Posted
Hi Sarb,
Beverly and I have corresponded as well and, no, neither of us is happy. Makes me wonder what is being "shared?" bis
Emis_Moderator Guest
Posted
Hi both,
The only change to the site has been the reduction in emails and yes cost was an issue but not bandwidth. We get charged for sending emails and it was costing us over £40K a month to send the millions of emails. We are looking at reinstating the emails but only on an opt in basis and only for active users so it will take time. The actual function of the site has not changed and you can still see all notifications on https://patient.info/forums/me/notifications I am aware the forums are quiet because of the notifications issues and have been feeding back about this.
Regards,
Alan
Guest Emis_Moderator
Posted
Forty thousand pounds a month is a heck of a lot of money so I understand why the change. Figured it has to do with cost. Hosting a huge global site like this is a big job. I don't have any trouble with the site, finding notifications and messages but then, much of my work is computers.Many times people are frustrated by change--no matter whether positive or negative. Wish you well.