Wednesday, March 9, 2011

5 Commentary: Looking At Lyme Groups on Facebook

After there's been much brouhaha over my first forum banning - more than I expected, actually - I'd like to take a little time-out from that to look at the many Lyme disease-related groups on Facebook.

But before I begin, apologies, to those of you who ended up on this page after using google and realizing it's the wrong page...

Sorry, to you who are tourists on your way to Connecticut who just found this page and are scratching your heads after you googled looking for information on Old Lyme and Lyme, Connecticut - I suggest you put "- disease" in your search box in order to remove mention of Lyme disease from your results.

And to the residents of Lyme and Old Lyme, I am very, very sorry... you have probably had enough of your beloved hometowns being associated with a tickborne illness. That really sucks, as both towns have things to see and do which do not involve infectious diseases, like visit the Florence Griswold museum.

The rest of us reading along hope to someday be amongst the residents to your north in Hadlyme... if that name has anything to do with the condition of its residents, that is.

Okay, now that those who are looking for other things have gone elsewhere - such as their fabulous vacation to Old Lyme - you should know upfront that if you are expecting an in-depth review of groups here, that is not what you're going to get today.

Do you know why? Because there are too many groups and pages for Lyme on Facebook.

Just typing "lyme disease" into the search box led to my poor arthritic finger getting worn out from hitting "More Search Results" at the bottom of the page. I don't know where to even begin, and anyone on Facebook who is new to Lyme disease probably won't know either... It's like 300 channels of cable, baby, and nothing on!

Okay, it's probably not that bad, but...

The images to your left are just a fraction of the groups which exist on Facebook for those who want to learn more about Lyme disease. I only posted about three screens of them... I could have copied and pasted more, but I do have a limit to my energy (and sanity) for all of this.

Imagine being diagnosed with Lyme disease and trying to find information and support on Facebook.

The options are overwhelming.

Obviously, if you know to look for a local support group, the task might be easier for you because you can start by looking up the nearest town or city which has a support group.

But there's a lot here to look at... and sort through overall.

Other than by your location, how do you determine where to begin when you are totally new to the scene?

And even if you aren't new to the scene, how do you find specific subsets of groups you might want to join without knowing where to look in advance?

Maybe you want to sort by different categories of Lyme support  or information groups - but there are none organized there to sort by.

Looking at it all, I think one thing that would help is if people got a whole lot friendlier... You all need to get closer together and support one another, it's important in these times.

For example, let's say I'm new to Lyme disease and I want to find friends who can relate to what I'm going through. So I type "lyme friends" into the search, and here's what I get...

Wow, a lot of Lyme friends!

(Again, apologies to the East Lyme Friends and Friends of Lyme groups... I think you are probably waiting to befriend those tourists I was talking about earlier...)

But as for the rest of you - especially those poor 2 people at the very bottom - you seem kinda lonely down there...  And yet, you are friends, too.

Wouldn't it be nice if you got together and all made one giant group of friends?

Or, if that doesn't work - and you are all fighting each other - can't you each at least call yourself something else different?

There are so many places where I can see the possibility for combining forces, really, and that alone would cut down on the sea of groups I am drowning in...

Like you guys...

Ought to get together with these guys...

And you guys...

Really need to talk to these guys...

Maybe these guys...

should seriously work with these guys, too, no?

I also think that these guys...

really need all the support they can get, as Lyme disease has been considered even more controversial to have in their country.

I really wonder sometimes about people's individual stories, too...

Maybe this person should consider....

getting together with this one?

Maybe they can help them with Lyme Disease and support each other in getting well and getting back to class.

On the other hand...

I think these guys...

probably shouldn't talk to these guys...

unless they stop using the word "gay" because it could possibly lead to some heated arguments.

The healthy thing, of course, is to take on the right attitude...

And probably avoid looking at the dark side of things too much.
Including the unfortunate side of Facebook, where Facebook's format and coding just messes everything up. 

Such as...

3 people like this?

No one likes that. 

Bad, bad, Facebook. You're not getting a gift next Christmas. Not even coal.

And not to be outdone by the poorly misplaced "Like" above, there is always the unfortunate placement of seemingly unrelated events to others...
I knew some of us needed medication, but this is ridiculous..

Okay, "Thorazine Overdose" looks like it's the name of band, but why is it next to entries about Lyme disease?  

Note to bands: If you are holding a Lyme benefit, put that at the top of your announcement.  

Almost last but not least, if you are really lost in all of this and there is no way to find your way around this - someone put together one group to rule them all...

With 488 members - and possibly more now, since I've posted this - there has to be some sort of index or guide to it all!


  1. Do have any plans on how all these disparage groups can be convinced to work together?

  2. cave76,

    I think you meant to say "disparate" rather than "disparage" - if not, that was an incredible Freudian slip given topics on this week's radar - hats off to you.

    I think there are potentially two questions in your question.

    One is about how Facebook could provide a better infrastructure so groups and pages return results that are more meaningful in a top level search.

    One is about how the actual groups of people involved in the groups and pages can work together rather than divide into smaller and smaller groups.

    I think the former is easier to solve than the latter and would involve some web developer to take some time out of their schedule to improve group and pages categorization - and also for people creating their groups to make more specific names.

    For example, add specific tags embedded for each entry (page or group):
    Location - city, state, country
    Interests - advocacy, outreach, hobby, social, political, support, creative, health, science, research
    Religious affiliation - major religions, other
    Special interest - religious, fundraising, LGBT
    Group goals (would need to be better defined for tag options)
    Alliances (with other Lyme groups - cross index using semantic web)

    I'd have to think about it a little more in terms of what information or tags could be appended, and then after maybe the first 10 results are returned, have a small dialog box that says, "Refine your search?" with little checkboxes next to each tag set stating "Sort by" or "Select only".

    If you can't get people to glom together into fewer groups right away - whether it's impractical or because their goals and needs really are different - then at least set up the site so it's easier to winnow down big result sets so you can more easily find the specific groups that interest you.

    Make it more userfriendly to people who get tired and achy repeatedly clicking buttons or links, somehow... it's one thing I utterly dislike about iPhone's Facebook app - I try to look at previous entries and I just kept getting booted back to the most recent one, *every time*.

    I'd have to think about it some more? This is off the top of my head and a snap answer.

    The possible other question in your question is probably not suitable for the space of a comment, even though I have left quite lengthy comments before. I also need more time to think about the answer.

  3. Yeah.

    Why can't the commentators who said that the Facebook groups are so much better, so much more informative, you know, the one on the banning post who made claims for Facebok, why can't they simply point us in the right direction?

    Too much to ask?

  4. Camp Other------ LOL----- You're right, I left the 'd' off of 'disparage'! Freudian, maybe. Not paying attention---- most likely.

    RJ "Which" direction?


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