Any other good lyme forums? (Please participate)

astroman said...

Girlie said...
Although HealingWell has slowed down - I still feel there’s enough traffic to stay here.

If everyone jumps ship I doubt I’ll do the same.

(Edit: looks like I quoted your quote before you finished adding to it. Because your last line was not there.?)

Not sure you’re grasping this. Let me explain:

It’s not about if healingwell currently has enough traffic for the current users.

However, all of the forums within the healing website really do not have enough traffic for the owners to make decent money off of. They make money off of ads. The price of ads is charged per how many clicks the website gets, which is traffic. This place does not have much traffic compared to what it used to have. From my business instinct, I would say it has a very high likelihood of disappearing unless they do something about it. So far they have not.

Look at the other health Forums within healing well. Noticed that some of them had not had traffic in over a year. One year.

And let me ask you this, when is the last time that the new owners actually answered a question that you Asked them. And if they did answer, how long did it take? And what have they told you about their new ownership and what they plan to do with this website? They certainly are not telling us.

If I owned this place, you could be sure that I’d be in contact with the moderators and or regular members to let them know what is going on. Any Responsible business owner would do that.

So if this website does go away:
We are thinking about an agreed-upon lyme forum to go to, should that actually happen. It’s kinda like having a spare tire in your car. (Oh wait …some new ones don’t have spare tires lol)

If this website did go away, you would not be hanging out here either. Nobody would, it would be gone. You would be swimming in the ocean of the Internet, possibly wondering where the other lyme people are that you know of.

Internet forum websites, shutting down unfortunately happens and it’s been happening a lot to other forums that are not even health related for the last few years.

Hopefully this makes a little more sense now. Being prepared is all this is about.🤔

///////////////////
I understand. If it shuts down I will either
a) stop participating in any Lyme forums.
Or
b) go to the forum that the members here decided on.

Just an fyi: when I first joined healingwell - (close to 10 years ago) there was only 3 or 4 active forums at that time.
Lyme
Prostate Cancer
Breast Cancer
Ulcerative cholitist
Maybe one more

thanks for the suggestion - its a new one on me

i have just registered to have a look around

it doesn't have a forum for lyme disase as such

it just has topics with tags - so for example if i person had a health condition and posts a question or experience - and puts "lyme disease" as a tag - then you can find that with a search
if they don't put Lyme disease in as a tag - you would not be able to find it in amongst the hundreds of other topics

the results of a search on "lyme disease" are shown as an endless scroll

finding conversations that are only about Lyme or especially lyme related seems to be a challenge

It’s a shame the smartpatient one isn’t more user-friendly.

If you look at the way they generate income/money on their ‘frequently asked questions page’, it’s interesting that they work with medical centres/hospitals/clinics/pharmaceutical companies/academic researchers etc.

As a long-time tick-borne sufferer one has become abandoned by mainstream. Could this site be a way of gaining more exposure/generating interest in our condition?
I don’t have the answer, but thought it was an interesting difference to other forums that I have come across.

It would perhaps be good to get one or more of the Lyme organisations /LLMD’s/ILADS interested in something like smartpatient.

Blakeleysmom said...
I do not post here often anymore (just taxed out emotionally and have great difficulty even asking and answering about Lyme anymore) but my daughter is still sick and I still come here to read often. This forum is where I have learned everything I know about Lyme and all that goes with it. My daughter would not have had the opportunity for so many treatments if I had not researched and found it all out here first. I have said many many times that doctors who want to know anything about Lyme should come to this forum for their research and they would find out far more than is offered anywhere else.

I have found the group here to be compassionate, kind, generous with their time, and extremely knowledgeable. It would be a huge loss if the forum ever dissolved. I would want to know of a place where everyone could go to continue the group but also the huge amounts of information here being inaccessible would be tragic to anyone searching the web for help. I can’t thank you all enough to anyone who has ever taken the time to reply to questions and give guidance to those on this horrible journey.

Oh Blakelysmom - I’m so sorry your daughter hasn’t improved after all these years!

I can’t even imagine how hard this is for you (and Blakey ) to endure this.
My heart goes out to you and your daughter!

❤️