Mvertigo moving to Discourse

Note from newer owner: The site never died :wink: :+1:t2:Long live mvertigo!

Hi All,

Adam and I have decided that this forum will become an archive in some format yet to be decided. Vestibular Migraine Professional or ā€œVM Proā€ on Facebook will be the main group for chatting with other people dealing with VM.

The reasons for this:

  1. This forum is expensive to run (Adamā€™s cost) and Facebook is free.
  2. I spend about 90% of my time on this forum removing spam.
  3. VM Pro makes for a much more engaging and interactive experience when talking to others.
  4. VM Pro works on mobile devices; this forum software is dated and does not fit with the current technology.
  5. VM Pro has 700 active users where feedback comes very quickly. The one-year pilot is over and it has been very successful.

Let me know if you have any questions here about accessing VM Pro and I will be pleased to help you out. If privacy is a concern on Facebook, I would suggest creating an alias. Note that only people within the VM Pro group will see your posts there and no one else. It is a ā€œclosedā€ group.

Itā€™s been 10 years here and the times, they are a changing. We have to roll with it. :slight_smile:

This is the link for the FACEBOOK PAGE:

https://www.facebook.com/groups/vmpro/

Cheers all.

Scott

I may understand some of the reasoning
ā€¦ but it doesnā€™t mean I have to like it.

Hi Scott,

Have you and Adam set up the Facebook group or are you merging with an existing group? I only ask as I have really liked the ā€˜atmosphereā€™ on this forum and it would be a shame to lose that. Trying to archive this site would be great if it is possible as there is a wealth of information here which is currently searchable.

Thank you for creating and running mvertigo, it helped me get a diagnosis after many years of suffering and I doubt I would have got that without this website.

Katherine

Hi Katherine,

Good question! Yes, I created the FB group (VM Pro) last January as an experiment really. I was kicked off another prominent migraine group because I challenged the junk information people were posting thereā€¦ the same reason this forum was born ā€“ because Adam and I were banned from various forums in 2004 for challenging the alternative junk out there. VM Pro is a place you can go where you will be free of whackos and junk science and have the same supportive and nice people that we have here.

So yes, in answer to your question, the FB group is exactly the same as mvertigo in that regard. Any nutters show up and they are shown the door.

Cheers,
Scott

Cool, I was a bit wary as not many people accept migraine as a cause and I canā€™t be part of that. I have just joined the FB group.

Bye bye mvertigo!

Great. I think youā€™ll find VM Pro easier to use and more fun ā€“ smart phone use is a major plus.

First, thank you for this forum; it was a wealth of valuable information. However, as a privacy-conscious individual I strongly oppose your move to Facebook, which is somewhere I simply cannot follow you to. Furthermore, by closing off the group so that non-members cannot easily read/search the archives I am afraid many people that could have been helped (by confirming that their symptoms either do or do not match a large group of individuals with VM) will just pass on by and keep on searching, falling victim to the superficial diagnoses so prevalent in the medical system today (e.g. anxiety, depression, etc.) or the latest new-age woo. Bluntly, from an outsiders perspective a closed group on Facebook is not going to be easily distinguishable by the layperson from the (fraudulent!) groups on the same site regarding undetectable Lyme disease or physical damage from low-level electromagnetic radiation.

Also FYI it is against the law in many places to create bogus accounts on Facebook.

1 Like

Part of what whitepines said was a concern I had myself, actually, and partly what bothered me. Having a public Web site surely benefits those who, in the midst of searching for answers, more or less stumble upon the site. When I didnā€™t know what on Earth I had (I think I first posted to HealthBoards.com), and posted about the fact I had a (dubious) diagnosis of VN, it was you (Scott) who replied and in turn directed me here. Others, as I said, have found this site ā€œon their own.ā€

You wrote, in part, ā€œAdam and I have decided that this forum will become an archive in some format yet to be decided.ā€ I donā€™t know if this is one of the ideas you two are considering, but I wonder if perhaps this site could continue to exist, but in a more or less as ā€œtraditionalā€ Web site format (that is, more of an archive but without the message-board component/format). If the info here was able to remain publicly accessible (/searchable) to those who are just ā€œsearching the Web for info/answersā€ ā€“ that is, people who donā€™t belong to (or even know the existence of) a Facebook group ā€“ it would be a plus.

The FB group is great for those who are members and know to look for it, but it is a private group. Perhaps it would be feasible, and less expensive/time-consuming, to maintain a site like this that, as you (Scott) said, serves more or less as an archive.

By the way, whatever you + Adam decide, might I suggest (if you havenā€™t thought this already) advising one or more of the prominent VM doctors/neurologists about the change? The reason being:

Dr Steve Rauch had this to say about mvertigo:

"I am a big fan of your forum and refer all my VM patients there. In fact, I consider one of the key features of a VM diagnosis to be the process of patients reading the bulletin board posts at your site and self-identifying as VM. I am honored to receive your invitation and Iā€™d be happy to try answering your ā€œtop 12 VM questions.ā€

Hi,

Joining the FB group was fine with me because I already use FB but there are two limitations. Firstly, I stumbled across mvertigo by googling my symptoms when I had been told I had VN but never improved after 5 years. It was when I listened to Dr Silverā€™s talk that is pinned on this website as an mp3 file that I finally had my eureka moment. I am now under the care of Dr Silver. Google searches and research will not find a closed FB group so everything that is posted from now on will not be reaching new MAVers who are being misdiagnosed left, right and centre and leading non functional lives. I fear that the FB group serves existing members but wonā€™t be helping future sufferers.

My second concern is that the content on FB has a flat structure, i.e. posts are in chronological order but there are no categories. So if you want to read up on peopleā€™s experiences with a particular drug then you canā€™t and the page isnā€™t searchable either. I am one of those users who will spend hours reading through the archives, using the search facility to read about one particular thing.

Just my input.

Katherine

What is the cost of running the website? Surely members can make small donations towards the cost

Closing the site is a bit drastic.

Can you not make more members moderators to help with the spam

Cant you move the site to a more up to date forum that works with new technology

I , too, am just wondering if there is someway to preserve everything on it, but no future inputs of any kind? Like others have said, I would hate that someone lost ,in misinformation , could not find help. I only found it by googling migraine and vertigo by chance, then seeing migraine associated vertigo and this forum when no medical person could help me. No one mentioned food triggers etcetera or tiltrating of meds- all kinds of things that kept/keeps me trying. And, for the longest time, I still did not even ā€œget itā€ until reading and reading, and still reading this site. I am still researching and hoping for much more improvement . Just a thought. I am so beyond thankful for all the work done by you, both, to help others. It truly kept me going when I was about done. L

ā€” Begin quote from ā€œhillstaā€

What is the cost of running the website? Surely members can make small donations towards the cost

Closing the site is a bit drastic.

Can you not make more members moderators to help with the spam

Cant you move the site to a more up to date forum that works with new technology

ā€” End quote

Iā€™m sad to see this site go! I wonā€™t be joining on facebook because I donā€™t have a facebook account for many reasons but hope this information can somehow stay available. I found it very helpful for the first part of the year I began to deal with this to come on this site as a guest. When I came to terms that this was my new way of life and I logged on for the first time. Thanks to everyone who played a role, big and small, providing all the information here! I am going to miss having this. If there is ever an option to do any of the above as suggested by hillsta please notify.

I have to say, I am sad to see this close. But that being said, I havenā€™t been on here in awhile and thatā€™s a good thing. I am seeing some level of success (knock on wood) with my meds and having more and more good days. I sit here today, though, in one of the worst in a long time as a snow storm rolls into the city and it made me think to look here for support. Like a good friend, I could always read posts and know I was not alone and not imagining all of this. So, even though I havenā€™t been a frequent poster and havenā€™t been around that long, a huge thanks for this forum. Iā€™ll be joining the FB community to talk and read there, and share more often. Hoping that I continue to see success (every time I post about it, I go downhill, hence my reluctanceā€¦) and really hoping you all see some relief soon, too. So Scott and Adam, see you on FB and thanks for your hard work here!!

Janet

Hi Scott and everyone else,

this is my first post though I have been reading the posts here for a few months and learned a lot. I would normally introduce myself more, but since this message is meant to be one of expressing thanks in the face of the website closing down, I wonā€™t go into details. Suffice it to say that I am in the early stages of treatment for MAV.

I would like to truly thank Adam, Scott and everyone else for their efforts in sharing their knowledge, experiences and helping others. I am sad to see that this site is going down and do hope that it is preserved in some form of archive so that many more people to come can continue to benefit from it. As someone suggested earlier, if there is a financial contribution that needs to be made by the members to make that happen, I would be happy to contribute.

Thank you again, everyone.
Asli.

Also sad to see this go, and would have been happy to make a financial contribution to the running costs and/or help to moderate if weā€™d been given the option.

Of course at the end of the day it is your and adamā€™s site. So I will just say thank you for all your work and efforts, and all the papers, advice and liaising you have done with specialists on all our behalf. It is so appreciated by so many. Thanks especially for the scientific, evidence based focus. Thanks to all the great members who really helped me when I was first diagnosed, including Victoria, Scott and Kelly.

Facebook already knows enough about my life, and I donā€™t need it to know more, so I probably wonā€™t be joining the other group.

I wish everyone good luck on their ā€œMAV journeyā€ in the future

Gabrielle

Hi guys,

Weā€™re going to give this a try:

discourse.org/

Itā€™s free, self-moderating, works on mobile devices and is designed to be spam free. Everything here would be ported over to Discourse. Nothing lost, searchable etc.

Cheers,
Scott

1 Like

Scott - I was just going to write and say how disappointed I was to hear this site will no longer be around and suggest that possibly you look into one of the free forums out there. Then I saw your post about discourse. THANK YOU!!! Mvertigo is great and I hate the thought of it being gone. Even though I only post occassionally I do come here often to see if there are any posts that I can respond to and to read your great articles.

Iā€™m not a big fan of Facebook at all and let me tell you why. I joined about 6 years ago using my real name and email address (which is made up of my real name). I also have a couple of other email addresses which are not even close to my real name and I use these in places where I donā€™t want my real name known (such as health or any other forums). About 6 months after I joined FB I went to some site where you can search for people by email address. I was SHOCKED to say the least, to find that when I entered one of my other email addresses not only did my REAL name come up but also my picture from FB. It was extremely disturbing to have my privacy invaded like that. It took months and months and many, many emails between me and Facebook, AOL and the site I was searching to have this resolved. No one ever gave me any explanation as to why or how this happened. I can sort of understand how FB could have ā€œsharedā€ the info they had on me with the other web site, but how they connected my FB picture and real name with my other email addresses I donā€™t know and no one cared to explain. Trying to get through to anyone to talk about this was near impossible because there was no phone number with which to contact them and they can answer or ignore emails as they please.

I do hope discourse works out - the information on this site is superb and Iā€™m glad it will be available for all!

Book

Sad to hear Facebook is going to be the new home. I find Facebook difficult to use as I am not a regular user and the last time I went to a group there (it was about taking magnesium supplements) it was impossible to follow discussions. It was equally impossible to find old posts. The whole experience was so disappointing that I never went back.

Brilliant! Thank you!

So far discourse seems great :smile:

Discourse seems like a great alternative! When I read your first message, I was under the impression Iā€™d have to start using Facebook but I misunderstood.

Itā€™s the same as before but on a forum platform called Discourse. Cool!