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Any other good lyme forums? (Please participate)

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Posted 4/15/2024 2:22 PM (GMT 0)
Heads up everyone!

People are talking about this, well im saying it out in the open.

All good things come to an end. This place has shown signs of ending for quite a while. We just dont know when.

If you know any lyme forms that have active participation, please list it here.

The few lyme forums I've seen lately do not have much traffic per the dates on their most current posts.

Facebook does not count, some have been brainwashed into thinking it does. It’s layout was totally scatterbrain, there is no layout. You cannot carry on a decent conversation without specific threads that stay. Its not effective or efficient from a user standpoint. Fact.

The new owners here from about 1.5 years now, are a small private investment group- they have no personal interest in this place or the maintenance it requires. They have zero sense of communication with us. Thats how many investment groups operate.

Profits are the purpose and this place is no longer profitable. ***They will not even see or respond to this post, a real business owner would. ***

90% of the other forums on healing well have zero traffic, its dying.

Again, please participate in this.
Posted 4/15/2024 3:17 PM (GMT 0)
i have not come across many i can really recommend

there is a not for profit run forum at lyme.net - that is at least well intentioned and run by patients for patients - but traffic was below what we see here when i last looked
there are a few very helpful people there - but mainly very lost and desperate souls.
https://flash.lymenet.org/scripts/ultimatebb.cgi

there is a lyme disease sub forum at phoenix rising ME/CFS forum
i think the site is patient ran - it has had a few political ins and outs over the years - but is back in original ownership and is a much more modern and well maintained forum with more features
i have had some correspondence with the admins there and they were super professional and helpful
i think traffic is also low in the lyme disease section - but would go up dramatically if we all ended up there

link https://forums.phoenixrising.me/forums/lyme-and-bacterial-infections.125/

i have not come across any others of note - its a while since i looked - but since everything has been moving to Facebook type platforms - i doubt there are many new traditional forums -- it may be that if we want a stable, modern, patient ran forum, with decent participation - we would have to make it ourselves.
Posted 4/15/2024 3:24 PM (GMT 0)
noooooo are you serious astroman? This is a great forum. I know I've been off and on it since I joined, sorry for that, life gets in the way. But this forum is way better than the fb groups I'm part of. Yes, the layout is a total mess.

I certainly hope this forum doesn't disappear. It used to be so active back when I joined. Mods had a hard time keeping up with the threads, they were so fast moving. I'd be very sad to see this forum shut down. I like the layout way better here and I find members are more knowledgeable. Plus I noticed thate fb groups tend to have people who are ruder. Members here seem more polite.

How can we keep this alive? I do not want to see it go sad((
Posted 4/15/2024 3:26 PM (GMT 0)
hi Sunfun

it may not be going - Astros point is just that we don't know - there is so little communication from the owner - and there are random outages without explanation - so he feels it might just close without warning

i guess the main issue is we, the members have little or no control over its future
Posted 4/15/2024 5:03 PM (GMT 0)
to be honest, this one is far my favorite! there is no hate or stupid stuff going on. everybody respect each other! Love it!
Otherwise the buhner group on FB
Posted 4/15/2024 5:18 PM (GMT 0)
Some suggestions here

https://old.reddit.com/r/lyme/comments/1c30hqr/lyme_disease_forums/
Posted 4/15/2024 5:39 PM (GMT 0)
I find this lyme forum is pretty active

lyme disease . org
Posted 4/15/2024 6:17 PM (GMT 0)
hmm - trying to subscribe to the Lymedisease.org one.

initially went OK - but no access till they have confirmed your email - and i get a bounce back from the confirmation email saying - "server not found" 🤷

update / edit to add - clicking the activate link in the confirmation email works ( replying to the email does not )
Posted 4/15/2024 6:18 PM (GMT 0)
the lyme reddit is horrible when it comes to informations.

i cant recommend facebook groups either.

this is without doubt the best place for lyme and infections for me. the most stuff that i know about it comes from here.

because of my me-cfs Dx i found phoenix rising very useful. if this forum is ever going to die, i think hanging out in the chronic infectious subforum of that would also be totally fine for me.

if this ever going to happen we should move as a whole i think and decide democratically.
i have enjoyed numerous tips of healingwell users so far and i dont want to miss them smile haha
Posted 4/15/2024 6:31 PM (GMT 0)

BlazerGermany said...


if this ever going to happen we should move as a whole i think and decide democratically.
i have enjoyed numerous tips of healingwell users so far and i dont want to miss them smile haha

i think this is a good point - otherwise - if this forum were to go down tomorrow ( i'm not saying it will - but just as a hypothetical) without any prior arrangement between us - everyone would scatter to their own preferred next best option - which will likely be different in each individual case and many of us would lose touch.

blazers suggesting of agreeing together en-mass which alternative to use before hand would mean we would all move as a block and the group would be maintained.
Posted 4/15/2024 7:16 PM (GMT 0)
Maybe we could try out or just have a look at the different forums then vote for which one we like best? Is there any way we can do a poll on here?

I know Sara is on the Lyme disease. org one as well, the lyme net one isn't very active.

I haven't tried the phenix rising one. When I tried to sign up they ask you to introduce yourself and answer a lot of personal questions about your health which I didn't want to do but you have to do this to then be able to participate in the forum. Does anyone know a way around this? thanks!
Posted 4/15/2024 7:33 PM (GMT 0)
i dont remember intrusive questions when i joined the PR one - maybe its a new thing to prevent robots or scammer etc

is it more of a convention or are you obliged to answer or be blocked ?

they seem a pretty fair and friendly bunch - so i doubt they want people to be uncomfortable

the categories they say the forum is for includes people with lyme - or just people with fatigue who think they may have CFS or dont know what they have and are just looking for information

so i would have thought you could just say any of those things and tell them you are not comfortable about sharing more online - and that should be fine
Posted 4/15/2024 7:55 PM (GMT 0)
i know they have this introducing system since i came there. i am not even sure you have to answer every question.

maybe you wanna check out if you can skip them. but in general i think that a introducing culture isnt too bad, when you get to decide wich informations you dont want to share of course.

pro's of PR:
- open minded for 'alternative' treatments not a bunch of CDC worshippers like s4me for example
- encouraging culture instead of discouraging
- broad spectrum audience, you get a lot of input if you want
- tends to be a little bit more alive and breathing then here

con's:
- some sub forums are definitly less buisy then here. this may be because this forum here is more specific.
- the search engine of PR is straight garbage and i have never gotten a search result i wanted
- because its so broad spectrum it sometimes feels more empty even though i am kinda sure there are more people then here
- its a forum for me-cfs basically. not every chronicaly infected person falls into this criteria. new lymies may not even find the forum and the lyme subthread is at risk of dying out with no new stream-in.

yeah i guess i dont really know any other forum so i just wanted to bring my personal pro/cons up
Posted 4/15/2024 10:17 PM (GMT 0)
it looks like its a convention only at PR

i just signed up with a second account to check and i can post in threads without answering any questions

so if anyone is concerned about having to answer questions - i would just state that you have lots of fatigue, possible lyme disease and are there looking for help and support - but not comfortable answering more questions just now.

i think they will be fine with that
Posted 4/15/2024 11:48 PM (GMT 0)
Would be very sad if the current forum disappeared. I haven’t really posted, but come to the site nearly every day to read the posts.
Posted 4/16/2024 12:11 AM (GMT 0)
I think Blazer’s idea of deciding in advance where to go is an excellent idea.

I wonder if a brand new Forum could be set up by one of the current members who is technologically minded or who has experience with this sort of thing.

No idea how easy/practical this would be to do or whether anyone would want to try to do it. Apologies if this thought is a ‘non-starter’.
Posted 4/16/2024 4:04 AM (GMT 0)
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.

It is a good idea to pick out a forum to go to if this one suddenly shuts down for those who want to continue on.
Posted 4/16/2024 4:27 AM (GMT 0)

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.🤔

Post Edited (astroman) : 4/16/2024 6:43:11 AM (GMT-8)

Posted 4/16/2024 7:27 AM (GMT 0)
I think we are on the same page, Astro.

I wrote:
“It is a good idea to pick out a forum to go to if this one suddenly shuts down for those who want to continue on.”

So I do think it’s a good idea to have a backup plan.

But - in the meantime - I prefer to stay here.
So far I haven’t found another forum that I like.
Posted 4/16/2024 8:07 AM (GMT 0)
then lets bring up a few alternatives and make a poll.

i mean as long as its running we can stay here and have the backup plan just in case? doesnt mean we have to leave today or tomorrow.
Posted 4/16/2024 9:34 AM (GMT 0)
Hi, this forum is great and I have benefitted so much from it - how decent, respectful, clear and insightful communication is - compared to my previous experiences. I have been also a little on FB and reddit.com In any case wherever you guys will move I will move there too, as I have enjoyed your company and friendship a lot. Best regards, B
Posted 4/16/2024 11:16 AM (GMT 0)
Hi,

I just write here to parcipate but unfortunately I dont know any forum on this topic. Is it possible to create a new one in a free place? have no idea just wondering

Bee.
Posted 4/16/2024 11:33 AM (GMT 0)
i don't think its very hard to create a forum as such -

the problem i think is more to do with how you fund it

there is a cost to running them - server space and traffic etc and if you notice most of the patient owned and run forums are struggling to keep going - continually on funding drives begging for donation etc - which is one model - but one that seems a little fragile.

the "free" forums platforms out there that allow users to create their own new forum - are actually using the traffic generated by the forum users to generate advertising and data analytics revenues - so that model is actually the same as is being used here at healing well - and has the same issues - its not run for the benefit of the members and the owner of the server / site can shut it down at any time.

the solution to that would be to buy a domain and server space - set up our own forum - and potentially choose our own ads etc to help pay for it - but we would still need traffic .....

this is the key issue because, although there are only a handful of posts on healing well a day - there are thousands of past threads and thousands of page views per day where members and guests visit to read - even if they don't post - and it is this non-active-member traffic which is being monetised by the owners - who gather data about visitor behaviours, data analytics and ad clicks.

so perhaps the real problem is if the 20 or so active users here all went to another site - it would not have the traffic to support itself
IT is not my specialist subject so i may be off on some of the above - but i think thats the basic gist of it
( anyone with real IT knowledge please do correct me if i have it wrong)

in any case - i think there is enough there to see that, for a forum to be long lasting and stable, to help its members - it needs to be run like a business - ie able to wipe its face as well as help people
Posted 4/16/2024 3:17 PM (GMT 0)
Emma is right - I am also active on the LymeDisease.org forum, which is just a straightforward email list. No ads, no profiles, just messages. For reference, today there were three new posts and eight replies to old posts. Sometimes there are fewer, and often there are many more. It feels pretty active to me, actually increasingly so in the years I've been a member.
Posted 4/16/2024 3:51 PM (GMT 0)
in case anyone is concerned about intrusive questions -
here is an example i picked up from the PR forum of how someone with Lyme answered

Do you have ME/CFS? I'm investigating (I have ME/CFS-like symptoms)
If not, what is your interest in this illness (eg, caregiver, medical practitioner, researcher, etc)? Post on Igenex and lyme
location Southern california
Gender Female (she/her)
When did you come down with ME/CFS? October 2022
Any treatments/protocols you are trying? Any doctors or practitioners you have been seeing? I’ve not been diagnosed with this particular
ME/CFS severity and level of activity (scale of 0 to 10) 3 — MODERATE: Leave house several times per week, 2 hours work/activity a day.
Please tell us a bit about your ME/CFS history and symptoms so members can respond appropriately I am told I have lyme disease

no one demanded anything more - and in fact if you posted "prefer not to say" to any of those - i am sure that would be fine also
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