LUpus Patients Understanding & Support (LUPUS)

[infotech]

This is my first post: I have been with IPS since version 1 - since 2003.

I tried to access my "Support" via my Client page, but it's missing . . . . because I have not "renewed" . . . here's why:

 

 

I am the Director of LUPus Patients Understanding & Support (LUPUS), a non-profit for people with systemic lupus erythematosus (SLE). We provide free information & free psychological support. We do not charge any money. We rely on donations & the shortfall, comes from me.

 

I have used IPB since version 1. When version 3 was released, I paid $99 for the Lifetime License. That was a huge sum of money. When version 4 arrived, we were told that the Lifetime Membership did not cover version 4. I wasted my money; you cheated me & others. There were a number of very angry people who expressed their outrage on the forums. I said nothing, but understood their anger. You didn't care. 

 

I decided to self-host for a few years until one of my upgrades failed. You didn't offer any help, so I reluctantly decided to pay $20 pa for hosting. This is peenuts to you & commercial websites but a lot of money for non-profits like me. You didn't care.

 

The final insult came recently with an email telling me how happy I will be for your future services & to pay 2.5 times my monthly payment or all of $5 less, if I pay annually! 

 

I looked at self-hosting. You expect me to pay $6-700 & then $99 pa, when I have already paid you hundreds of dollars since 2003!

 

Fool me once, shame on you! Fool me twice, shame on me!

 

What IPB has done may be legal, but it is not ethical. Almost 20 years of work down the drain & IPB couldn't care less. 

 

I will express appreciation to Rhett & Mark at Support. They have been a delight. 

 

The very least IPS can do is to allow me to have a copy of my website that I have paid for since 2003. It has thousands of important articles on autoimmunity, Covid-19 & systemic lupus erythematosus (SLE), lupus variant conditions and the antiphospholipid antibody (Hughes) syndrome.

 

I shall not hold my breath for a response.

 

 

Rosalind M Share MA(Ed),MA(Psych),AdDip(Psych)
Director
LUpus Patients Understanding & Support (LUPUS)
http://www.lupus-support.org
 

[Jordan Miller]

Hey @infotech, I'm sorry to hear you aren't having the best experience. 

We definitely value you as a customer and thank you for being with us for so many years. I know that sounds very cheesy /PR-ey, but it's true. We've had to make the difficult decision regarding our pricing structure to stay with the times. 

Seeing as a lot of people rely on you to be a resource, perhaps this would be a good opportunity for you to give your members the chance to help return the favor and embark on a little crowdsourcing? 

I noticed you already announced to your community you are switching to HealthLock because of the price increase. We totally understand your frustration and apologize. If you have a change of heart you are always welcome to be an Invision Community client again. 

Regarding your data, it's 100% yours. I created an internal ticket outside this topic and will followup with you there with links so you can download your data. 

We hope to not see you go, but if you still decide after a little time you want to cancel we understand. 😔 

Sending you a lot of love and positive vibes. 🎄