posted
Hi, Yes, I too was wondering why traffic was so low. There was always great knowledge here. I wonder if algorithms or other methods deter people.
Posts: 697 | From CA | Registered: Dec 2011
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1, people are in general being lured away to the instant gratification - algorithm-driven sites facebook etc that are geared around keeping people staring at their screens scrolling and swiping - unfortunately, that is the exact opposite to the strategic and intentional thinking that is needed to fight this disease systematically - but its what most people want.
2, not many people seem to know this but the rules the search engines work by were changed approx. 3 years ago in response to pressure from governments to deprioritise sites categorised as "alternative health" in the search results this means that would be new members looking for information on "Lyme disease" or "Lyme forums" are less likely to see this site in the first page of results = less new people will visit
3, this sites software and interface is ancient, clunky and off-putting to many new users. esp the younger generation. graphical interface, difficulty posting images, lack of thread tools compared to other forums etc etc
the combination makes for a trend that is only going in one direction I'm afraid - unless something radical is done
i have suggested to other similar forums that some form of members-driven membership drive might be done to help offset the inevitable - but there was little support for the idea - with many members preferring the idea of a small familiar community vs a larger broader and richer one - but with more "strangers" some mods there thought it would be more work for them to manage -
all seemed oblivious to the fact the decline would eventually get to the point where the servers would be switched off as most are paid for by advertising and no longer paying their way.
which is a shame
Posts: 245 | From UK | Registered: Feb 2020
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Well, part of the problem could be fixed if more of us stepped up to be moderators.
Except for Lymetoo, most moderators don't visit very often at all.
I wonder how much it would cost for a new website design to modernize this wonderful site?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8891 | From Illinois | Registered: Aug 2004
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posted
i'm sorry to disagree - but i'm not sure more moderators are needed at this point - as there are only 3-4 posts a day as far as i can see .....
Posts: 245 | From UK | Registered: Feb 2020
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posted
Hi - the mods do pay attention to any posts brought to our attention, and you're right, we haven't been visiting much. Ok, I'll start visiting a little more and maybe we can encourage more discussion.
Posts: 13116 | From San Francisco | Registered: May 2006
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I had put this in Medical because there are so few posts there.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I do notice we get people fairly often in “Seeking a Doctor.”
Really think an updated website easy to navigate and add pics etc would help. But don’t know the cost or who would take that on.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8891 | From Illinois | Registered: Aug 2004
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posted
the kind of membership drive i suggested to the other forum was along the lines of:
each member of this forum encourage 3 new people they know from other forums, real life, etc to visit the forum.
Posts: 245 | From UK | Registered: Feb 2020
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posted
Maybe we can put out the word to come and discuss more here. I still have a large facebook group with whom I have not communicated with recently. I could start there.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I hope maybe there isn't as much demand as before, but it's difficult to know whether that's the case or not.
I suspect it still remains difficult to find a proper diagnosis and treatment.
A big part of the problem with older, website based discussion forums is how well they interface with mobile technology so many prefer.
App based forums and groups seem more immediate. The small screens they're viewed on limit discussion while fostering a sense of immediate gratification.
I have quit referring people here because of the numerous vaccine conspiracy posts.
It's one thing for sensitive Lyme patients to be concerned about their own response to any vaccine and want to make those decisions carefully their own LLMD who understands their symptoms.
It is another thing to see so many pseudoscientific anti-vaccine conspiracy posts on this site. The majority are in Off Topic, but many are posted in Medical.
I don't feel I can refer people to a health information forum that is engaging in and perpetuating nonsense.
The posts go unmoderated. Some are even posted by moderators. I worry it will undermine the perceived quality of other medical information here.
Posts: 487 | From USA | Registered: Feb 2002
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I posted a good word on the Ohio Lyme disease Link Facebook page. Hope that helps.
-------------------- Ann-OH Posts: 1590 | From Ohio | Registered: Aug 2014
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
LymeNet is the BEST website for the most ACCURATE descriptions of living life with Tick Born Infections. 💚
Over 25 years of Lyme patient’s experiences stored in the archives. Very easy search engine. Diagnosis, symptoms, treatments, research and solutions for all things Lyme.
Thank you to ALL the past and present LymeNet posters, who generously shared their experiences to help others in the Lyme community!!!!!!!
We are all in this together. Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Lonestartick, I am one who's been following the impact of the shots. I like to look at what's being reported. I have even watched a summit recently that took me 72 hours to watch! 6 hours a session, interviewing a lot of experts and patients. They are showing tremendous injury from the shots, a high number of deaths.
When that kind of result is happening, it's imperative that we report it. It's not conspiracy - it's injury and death fact, by an industry that has no legal liability. Including a recent pathology study out of Germany showing the shots are causing myocarditis.
Granted, I would rather keep the focus on Lyme and co's here. But at the same time, I will not back down from reporting on the truth of injuries and deaths caused by the shots.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
with the greatest of respect i do not think this the place for lyme vaccine controversy discussions
it is simply off topic - and there are already many many other places more suited to that topic
in addition - no one is disputing that there have been deaths associated with vaccines.
but any discussion aiming to truly inform must spend as much time presenting the evidence for, as well as against any given position.
otherwise all we have is documentation of any given individuals confirmation bias, as they earnestly gather evidence skewed to only one side of the argument.
such a balanced presentation of the facts would show what number of lives have been saved by the vaccines vs how many killed. this data is available and shows the relative risk vs benefit equation for persons in different age group categories, and goes along way towards helping individuals make an informed choice.
more than this is simply off putting to many - and may serve to undermine the credibility of other information provided in good faith by other members on actual Lyme related topics.
i am not entering into a debate on vaccine related topics here - simply pointing out why they are out of place, and not actually helpful.
Posts: 245 | From UK | Registered: Feb 2020
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Agree Lonestartick.
Garz quote; “more than this is simply off putting to many - and may serve to undermine the credibility of other information provided in good faith by other members on actual Lyme related topics.”
Agree Garz.
This disagreement on LymeNet has been going on for a few years. I have personally heard from many disgruntled members that state they can no longer, in good conscience, refer LymeNet to sick Lyme patients due to all the controversies.
I believe we are the silent majority in hoping LymeNet management finally steps in and devotes ALL its energies to the treatment of Lyme and Tick Born Infections.
Here is my exchange with the moderators concerning the far-right conspiracies views posted on LymeNet from 2021;
“I remember and will always remember, my first visit to the Lyme forum. After 3 1/2 years and 19 doctors with no answers, I found LymeNet. Hopingandpraying found me a LLMD. (3 years later, she would ask me if I could help on that forum which I take great pride and honor in).
LymeNet was the holy grail of ALL things Lyme. 💚
After years of doctors, family, friends dismissing my symptoms, I finally found a community that welcomed me offering compassion and support and reliable facts.
I wasn't crazy. I wasn't a hypochondriac. I wasn't looking for attention. I was sick.
My concern is that new sufferers that come to Lymenet, come with great doubt in is this a real disease. They need to trust in the information.
Lymenet must be held to higher standards than Facebook posts or YouTube. Which it does consistently with researched journals, documentations, and the latest treatments and trials. First-hand member's experiences who have lived through this devastating disease is invaluable!
My concern is that new visitors to the sight will say wait a minute, what kind of site have I entered, anti-vax and anti-mask? I believe this will affect their decision on their Lyme health wellness journey moving forward.
Will the trust be lost?
For me, it's not about the Alternative Topics or the anti-vax or anti-mask. It's about not alienating new Lyme sufferers / future members. It’s about the big picture.”
The reply from moderator; “After contacting all parties, we have decided to let the challenging threads stand.”
I am at a loss as to how to proceed on LymeNet.
Posts: 2977 | From Florida | Registered: Nov 2016
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I have stopped coming to LymeNet or posting here a couple of times because of the rash of anti- , and political and non-scientific rantings that appeared.
Most of it goes in the face of plain truth.
When it is being posted by moderators, it is very hard to convince them that the Off Topic board is there for them. They can decide what goes where,
I don't see a solution with the way things are being run here.
So much of what is posted here IS very kind and helpful and well documented and really fits in General support.
But I can see where many patients would not want to believe anything posted here when they see stuff that is only negative opinion on topics that are not related to Lyme disease.
to the mods who i am sure feel that what they are posting is helpful and wanted by the members
rather than assume this is the case - why not ask the members if they would like this type of content?
eg do the members want off topic Pandemic, vaccine, vaccine injury and conspiracy thinking discussions:
1, in the main Lyme disease forums (medical questions + General)
2, in a separate forum - where people who are interested can read it if they want.
3, not at all in a lyme support forum thank you
after all - as moderators - its your role to serve the community and its wishes - not to assume your agenda is as important to every one else as it is to you and then use the platform as a personal soap box.
this forum does have the facility for a poll which would be an easy way to do this.
sadly, if the consensus comes back that most people want this off topic stuff in the main forums - that's fine, but to me it is no longer a Lyme disease support forum and instead just another outlet for individuals conspiracy theory's - so i will be leaving - i suspect many others will do the same.
there are after all other, better moderated forums that don't fill up with this type of polarized off topic debate.
this seems to me to be a fair and equitable way forward
Posts: 245 | From UK | Registered: Feb 2020
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Garz, I agree with you. Well said.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8891 | From Illinois | Registered: Aug 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Great idea Garz
Moderators?
Posts: 2977 | From Florida | Registered: Nov 2016
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Amen to that, Garz.
-------------------- Ann-OH Posts: 1590 | From Ohio | Registered: Aug 2014
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posted
Thank you Hiker, Bartenderbonnie, Ann-Ohio and, especially Garz, along with anyone else I missed.
I agree.
I sincerely hope the moderators and administrators take each of your comments to heart.
Garz, your ideas are excellent! It would be wonderful if moderators conducted your well thought out poll.
I have referred individuals to Lymenet and the recent feedback I received was skepticism about the validity of Lyme disease information as result of the conspiracy content.
This was always the one place I felt I could direct individuals to for accurate answers, advice and support seeking a diagnosis and for support while navigating their own healing.
In the event moderators ignore suggestions here, or decline to follow up and continue to use Lymenet to advance other, personal agendas,
please pm me with suggestions for alternative Lyme forums and groups I can refer patients to.
quote:Originally posted by Garz: as a simple solution
to the mods who i am sure feel that what they are posting is helpful and wanted by the members
rather than assume this is the case - why not ask the members if they would like this type of content?
eg do the members want off topic Pandemic, vaccine, vaccine injury and conspiracy thinking discussions:
1, in the main Lyme disease forums (medical questions + General)
2, in a separate forum - where people who are interested can read it if they want.
3, not at all in a lyme support forum thank you
after all - as moderators - its your role to serve the community and its wishes - not to assume your agenda is as important to every one else as it is to you and then use the platform as a personal soap box.
this forum does have the facility for a poll which would be an easy way to do this.
sadly, if the consensus comes back that most people want this off topic stuff in the main forums - that's fine, but to me it is no longer a Lyme disease support forum and instead just another outlet for individuals conspiracy theory's - so i will be leaving - i suspect many others will do the same.
there are after all other, better moderated forums that don't fill up with this type of polarized off topic debate.
this seems to me to be a fair and equitable way forward
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