Helping women with chronic illnesses

Where is @jeanneendo?

Twitter account known as @jeanneendo
July 13, 2008 – November 11, 2009


Looking for the @jeanneendo account on Twitter? It no longer exists. I just closed it down.

Why? That is a loaded question. I am unable to post a satisfactory answer just yet. The process of completely cleaning out and closing down my account was quite exhausting… and I am very behind on my work. I will certainly provide more details at a future time. For now, I wanted to post something (anything) for anyone who is confused, looking for me on Twitter, unsure of why I haven’t responded (to messages that I haven’t even seen), etc.

For now, I can tell you that I have been unable to even access my direct messages (with a couple of brief exceptions) for approximately a month now. So, if you sent me a message and didn’t hear back from me, odds are very good I never saw your message.

I do plan to explain things in more detail as soon as I am able.

In addition to explaining why I left Twitter, I hope to share some Internet safety tips in the future.

Right now, I am too drained to get into more detail. However, I encourage you to stop back here again as I will be updating about this as soon as I can.

I have met many wonderful, thoughtful, kind people on Twitter and it is sad to leave them. Hopefully, some of them will pop over here for a visit once in awhile but I know I’ll lose contact with others.

I did everything humanly possible to notify people regarding what was happening with my Twitter account but it proved an impossible task to tell everyone everything I had hoped to, when I would have liked to. There were numerous obstacles in my way. I apologize for any inconvenience. I really did do my best.


For more information, please see:

Why I Left Twitter

This page gives more information behind my decision to leave Twitter and I hope to periodically update the link with Internet security tips. The dedicated link is also located in my blog’s left sidebar under “navigation”. Thank you!

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: Where is @jeanneendo?


1 AvivaNo Gravatar { 11.12.09 at 1:17 am }


Don’t apologize or feel bad. You were put in an awful position, and I’m sorry that it’s been so hard on you!! Your loss will be felt in the #chronicillness community on Twitter, but I can’t imagine that anyone would fail to understand why you’re not there anymore.

I look forward to hearing the entire story when you’re able to share it. But until then, just know that so many of us care for you and are rooting for you!

.-= Aviva´s last blog ..The Little Things =-.

2 JeanneNo Gravatar { 11.12.09 at 2:47 am }


Thank you, Aviva. You have no idea how much your kind words mean to me! It has been a grueling process to close out my account. It took me a full week from when I started cleaning it out (manually deleting 8,533 public tweets alone). My goal was to delete all data from my account. I got the vast majority of it. I wasn’t able to get everything… simply because I was getting Twitter errors and there was no telling when they’d be fixed. Considering it took 27 days to get them to address the impostor account, I wasn’t going to hold my breath for anything else. So, I did have to delete my account with some data still in it. I was reluctant to do so but it was the only practical solution at this point. Thank you!


3 Keri EaganNo Gravatar { 11.12.09 at 4:35 am }

I just spent time growing my twitter following which is now at 387. I’m watching very closely for the next installment . . .

Keri Eagan
.-= Keri Eagan´s last blog ..Mutiny at the Asylum! =-.

4 JeanneNo Gravatar { 11.12.09 at 9:46 am }


I will write more details when I can. I’m so tired. Just be aware that the number of followers you have is getting into the territory spammers LOVE. The higher my follower number got, the more problems I had. Also, having a large number of followers makes it difficult, if not impossible, to really maintain a relationship with each of them.

If there is anyone in that 387 who you never really talk to, you might want to considering unfollowing them… for your own sanity. You are definitely reaching the territory where spammers will be attracted to your account simply because of your numbers. I was just talking with a friend last night and she has experienced the same thing as me with Twitter. One day you’re pretty spam-free and the next you’re getting hit with lots of spammy followers. By the time I reached the highest point (of having 600+ followers), I had installed 4 anti-spam applications (in a desperate attempt to manage the spam) and was still blocking up to 35 account per day.

These were plain spam, money-making schemes, teeth whitening schemes, pornbots, spambots, “how to get more followers” schemes, etc). When I deconstructed my Twitter account, I noticed that once my numbers got lower again (by me unfollowing and blocking people as needed), the spam stopped. It literally stopped. Before the four anti-spam programs were installed, I was easily getting 60 spammers per day following me… that I was manually “blocking and reporting”. This was not fun. It took an enormous amount of time blocking to keep my account clean.

You said the magic words, “I just spent time…” Twitter can turn into a huge time-suck once you’re blocking spam all the time. I wouldn’t wish it on anyone. The onslaught of spam happened before an impostor followed me on Twitter. I had been doing battle with spam for awhile leading up to that. So, just be aware that your following number is reaching the zone where you really become a target. If you comb through your followers, you may find that you already have spammers attached.

I had accounts that looked “normal” when I followed them and then morphed into spam sometime after we got connected. In other words, the person changed the name and avatar and started tweeting on totally different topics than when I started following them! I literally watched an account morph before my eyes one day. I saw the avatar pop up on TweetDeck and it looked very spammy (something I would have never followed). Yet, it was coming up in my “all friends” category as if I were a follower. When I pulled up the account for a closer look, the account name was initially one I remembered following but it changed its name while I was checking out the account. It had been a “normal-sounding” name but then the name changed too. The new name, too, was spammy.

So, essentially… this person had created an account that looked “normal” (some sort of chronic illness type profile that I would follow) but then it turned into a nasty spammy avatar and spammy name and began sending obnoxious tweets. Needless to say, I immediately did a “block and report spam” to Twitter on the account. It disturbed me, though, that people can “trick” others into following their spammy accounts by taking the time to first pose as whatever they think will appeal to the person and then morphing the account later. I found this troubling. I went on to see other incidents of people posing as chronic illness patients (more serious incidents). It is upsetting to me that people are out there posing as chronic illness patients and befriending actual chronic illness patients… but it’s happening. So, just be really, really careful who you share personal info with and who you trust because there are definitely people out there pretending to be chronically ill patients who are not. Sorry to be the bearer of bad news but this is the reality.


5 Jannie FunsterNo Gravatar { 11.12.09 at 2:15 pm }

As to your “I will lose contact with others,” good luck on getting rid of ME, Jeanne!! No such dice, Woman. I hereby threaten to keep on coming back here again and again ’til we are both all grey, wrinkled and such, –so get used to it…

That whole thing sucked for you. But there’s got to be a rainbow in here somewhere. There always is.

.-= Jannie Funster´s last blog ..First Pictures With My New iPhone 3GS =-.

6 JeanneNo Gravatar { 11.12.09 at 2:35 pm }

Jannie… I mean “Woman”,

You mean it? You’ll still speak to me? Whew! I was afraid I was never going to hear from you again. I had a terrible, haunting vision of you leaving my Healing Posse! I was traumatized. Thank you for reassuring me that you are, in fact, sticking around. Whew!!

As far as the gray hair is concerned… it may be awhile for that on my end, honey. For as you are fully aware… my hubby just colored my hair. (Hey, that rhymes). That’s right, folks. Months of trying to find a chemical-free hair color are over. I found something I can tolerate despite my multiple chemical sensitivity. It’s chemical free. Woo hoo! So, it may be awhile on my end, Jannie, before gray hair becomes an issue because I just got a fresh color on Halloween. I couldn’t have Harry Potter walking around with silver streaks in his hair. So Halloween was the day I found the courage to try another hair color. This one did not cause any bad reactions. Hubby did a nice job applying it too. Sweet, huh?

Now, the wrinkled part I can help you with already. That is already happening. Hey, I earned every wrinkle. I’m not complaining.

I took the hard way of closing my account (cleaning it out before deleting it) but I had my reasons. It took FOREVER but I would do it the same way again!

You are wise as ever, Ms. Funster. Every cloud has a silver lining. I’m free as a bird. I have flown the coop. I am free. Woo hoo!


7 Dorothy StahlneckerNo Gravatar { 11.12.09 at 7:03 pm }

I look forward to hearing what happened to you I have a feeling it’s important to many of us.

Dorothy from grammology
.-= Dorothy Stahlnecker´s last blog ..The Mind and Body needs sleep =-.

8 Keri EaganNo Gravatar { 11.13.09 at 8:08 pm }

THANK YOU for all the time you just put into explaining that. I actually thought I was being clever by installing “Related Tweets”, a plugin for WordPress that tweets for me related to topics I select which are often quotes. I noticed a few days ago someone joined Twitter under 5 to 7 different names. They sent THE SAME TWEETS at the same time. So I check the tweets and there is a whole page from this one person using different aliases. I just left it….figuring that if I get a huge following I could sell stuff – rethinking that one!

Woke up this morning to 18 direct messages from twitter – invading my email. I doubt I would even see a tweet from someone I care about if I check my home page b/c of the volume of messages.

I also have noticed the posing by others who pretend they have serious illness…..and here is something that really works! Pathetic. I’ve only been a member for three or four weeks so won’t be much of a burden for me to ditch most of the followers.

Keri Eagan

9 JeanneNo Gravatar { 11.14.09 at 3:49 am }

Welcome Dorothy,

Yes, it was quite a saga! The Twitter impostor situation was very upsetting. There were other Internet security issues that came to light while I was dealing with all that… very upsetting. Then, I closed out my Twitter account (a decision to be blogged about more in the future), etc.

It really was an eye-opening experience for me and it was disheartening to see just how complex the problems were. Ultimately, I felt compelled to walk away from Twitter. I’d been on it since July 2008. So, I had to accept the fact that some of my contacts there probably won’t keep in touch with me now that I closed my Twitter account but it was the right thing to do. More details to come on all that… for sure. I’ll be blogging about Internet safety in general too because I witnessed things that I feel compelled to share.

I just visited your blog and found some lovely, thought-provoking posts. I left you some comments and I have a feeling we’ll connect again soon.


P.S. I watched one of your videos (didn’t have time to watch more right now). I have a YouTube video channel. If you just click on the red YouTube heart on the top right sidebar of my blog, it will take you right to my videos, if you’re interested. I’m overdue to make one but you may find something in there that interests you. I vlogged about acupuncture, for instance. I LOVE ACUPUNCTURE! 🙂

10 JeanneNo Gravatar { 11.15.09 at 2:28 am }


Glad you got my messages. I am looking forward to summoning up the energy to blog about Internet security and obviously Twitter will be part of that. I know that Cassie, who helped me redesign my blog and move it from Blogger to WordPress, is a big advocate of keeping the number of plug-ins to a minimum. So I only have a few.

I’m not surprised that you saw multiple accounts tweeting alike simultaneously. Lovely (not!) that you got a page of tweets from one spammer alone. I personally would think long and hard about the whole huge following/selling stuff notion.

So, the 18 messages were from Twitter? Do you mean email notifications sent by Twitter accounts? I hear you about sheer volume of messages.

Yes, the notion of people posing as chronic illness patients is so troubling. So you’ve only been on Twitter about 3-4 weeks? I agree. If you decide to ditch your account… it will be far easier now than once it’s built up.


11 Dorian aka coffeesister |_|)No Gravatar { 11.21.09 at 4:05 am }

I cannot express sufficiently how serious to take Jeanne’s experience on Twitter — which she will share more fully, time & energy allowing — yet feel compelled to offer a counter-point. Inasmuch as her Twitter experience turned quite sour, I know first-hand that she was glad to be there while she was able to actively use it. In turn, I’ve not had a negative experience on Twitter — outside the same level of spam blogs used to get, equally unchecked, when they too were new — & just wanted to remind anyone who might be somewhat fearful of Twitter now that, just as with chronic illness itself, everyone’s mileage will vary. Such mediums always have their down-side yet, if the up-side’s still tipping the scales for you, don’t be too quick to give up. Twitter’s still a growing company that’s only now starting to improve their service since they got waylaid the last couple years by their astronomical growth. As they become more & more mainstream, there will initially be more & more spammers/schemers/advertisers/et al but Twitter will grow into themselves with better management tools; just as blogs did. DO heed Jeanne’s warnings, just bear in mind that accounts like mine (@coffeesister) provide that counter-point I mentioned. I have over 900 followers with very few issues. Finally, my intent is not to argue but I know Jeanne’s intent is also not to diss Twitter outright. After all, without it, we wouldn’t have found each other! 😀

“Each [tweet] represents a world in us, a world possibly not born until it arrives.” — Anäis Nin [edited by @coffeesister]
.-= Dorian aka coffeesister |_|)´s last blog ..30 Things About My Invisible Illness You May Not Know (for Invisible Illness Awareness Week) =-.

12 JeanneNo Gravatar { 11.25.09 at 9:17 am }


I apologize for the delay in posting this. You have a knack for writing comments that I have to digest a bit before I feel I can properly respond. 🙂 (By the way, that’s a compliment).

First, before I can reply to what you wrote… I must take a moment to publicly thank you for all of your support, time, and effort you provided when I was in the midst of dealing with having an impostor pose as me on Twitter. You spent an enormous amount of time helping me to get the word out about what was happening, educating people on details like how to block the impostor account, helping people understand which account was which, and explaining on my behalf what was happening… at a time when I was unable to use Twitter myself to communicate. Your assistance was indispensable, your support was outstanding, and your wisdom was unmatched! You really helped me at a time when I was incredibly overwhelmed and upset. So, THANK YOU!!

Now, on to replying to your comment. I certainly couldn’t agree more with your first comment! This was a serious situation… far more serious than the vast majority of people witnessing it seemed to comprehend at the time or even since. This was identity theft, plain and simple. As you alluded to, I haven’t written the meaty type of update I want to write about my Twitter experience as of yet for multiple reasons. One reason is that it’s still such a sore subject and I haven’t been ready to write beyond what I have already written. Another is that several of my friends have been going through crises and I have been focusing on trying my best to support them. In other words, my Twitter story and Internet security tips will have to wait a bit.

I have seen traffic coming in on my “Why I Left Twitter” page (and on this very post) and I know I need to get to it ASAP, though. I have about 5 different posts (on various topics) I’ve been writing in my head at once in the past week. I just need the time/energy to write them all out.

On to your comment, “I know first-hand that she (meaning me) was glad to be there (Twitter) while she was able to actively use it”. That is a correct statement. To be clear, the Twitter impostor is not the only reason I wasn’t always able to actively use my account. Before the Twitter impostor incident had even occurred, I had reached a point where I was using 4 anti-spam applications and I was still manually blocking 30-35 Twitter followers a day. (This was with approximately 600 followers).

This (spam) was not only slowing down my progress on Twitter but keeping me from other things (such as my blogging). Twitter was sucking my time. In short, the quantity of spam I was receiving had gotten out of control. My conclusion, based on talking with other endo bloggers who are on Twitter, is that the “robots” that scan keywords have a tendency to target accounts like my former Twitter account for certain types of spam. In short, because I wrote on Twitter about women’s health issues… I became a target for “pornbots”. For those of you blessed not to have been followed by a “pornbot”, it’s a Twitter follower with a scantily clad or even naked woman (or women… or one Twitter account that followed me was a nude male/female couple pictured in the avatar). Trust me, the tweets for these accounts were just as colorful as their pictures. These pornbots were driving me mad. I spent many hours blocking them. I did not want such accounts following me and showing up on my Twitter page.

Also, even after Twitter closed the account of my impostor, I was unable to access my own direct messages. I couldn’t even look at them. I talked to several other Twitter users who couldn’t access their DMs either. We all kept getting Twitter errors for DMs. I also got my share of “fail whales”. Twitter was clearly under strain. My account was partially inoperative. Since it took nearly a month for Twitter’s customer support to close the account of my impostor, I didn’t have very high hopes for them fixing my DM problem anytime soon. I finally had to abandon my DMs.

Now, for some Twitter accounts, these pornbots may be seldom, if ever, seen. I am not suggesting that if you use or sign up for Twitter that this will automatically happen to you. I am simply speaking to my own experience. To back up a little… the first many, many months (starting July 2008) I used Twitter there was no spam at all. Zero.

As Dorian pointed out, I DID have good experiences with Twitter. For example, we accomplished an immense amount for endometriosis awareness on Twitter in March 2009. Through events such as the worldwide contest on Twitter (May 2009) for tweeting to create awareness for ME/CFS, I tweeted so often that I placed 2nd in the contest. I met Dorian via the Blue Ribbon Campaign to promote awareness of ME/CFS. 🙂 In more recent times, I campaigned very aggressively for a campaign near and dear to my heart: health care reform. These are just three of many, many examples of causes I worked on, using Twitter, that helped people.

Dorian has been blogging for a very long time. She is a pioneer in that sense. Seriously, Dorian, how many blogs have you had now and how long have you been blogging? I absolutely understand what Dorian is saying about how it took time for blog spam to get under control in the early days of blogs. I understand that Twitter has had rapid growth. I fully understand that getting Twitter spam under control overnight is unrealistic.

My goal is not to make people fearful of Twitter. Do I think it has some serious weaknesses? Yes, I do. Do I like the fact that anyone can follow anyone on it (as opposed to needing to be “approved” such as on sites like Facebook or MyBlogLog)? No, I don’t. Do I think that the set-up where anyone can follow anyone they want invites various problems? Yes, I do. Does that mean Twitter’s all bad? No, it doesn’t.

For a long time, I was a heavy tweeter (and a staunch defender of it actually). Dorian is right that “everyone’s mileage will vary”. When I started Twitter, I was confused and clueless and didn’t quite “get it”. I was going about 5 mph. By the time I reached my “high point” with Twitter, I was zooming at about 100 mph and loving it. By the end, my account had been spammed massively and then crippled by an impostor. So I was down to nearly zero mph at the end.

A couple of people have asked me, “couldn’t you have kept your account open after the impostor account was closed?” Yes, I could have if I wanted to.

I chose not to… for a variety of reasons.

Yes, every medium has its downside and, no, Twitter is not alone in that regard. If someone’s up-side is still tipping the scales, I am not suggesting they leave Twitter – though they may find my upcoming safety tips/suggestions helpful… Readers, please keep your eyes peeled for my upcoming “Why I Left Twitter” page (left sidebar). [It (“Why I Left Twitter”) will probably be a work in progress and I probably won’t write it all in one shot. It’s simply too complicated].

Twitter is most definitely a growing company. In my humble opinion, it may be growing too fast for its own good. Honestly, I do not believe it should take 27 days of contacting Twitter to get them to close out the impostor account (of what they referred to as “a clear impersonator” when they closed it). Also, getting Twitter’s automated emails complaining about how short-staffed they are didn’t exactly reassure me during my identity theft crisis! Frankly, if they don’t have enough staff to manage something as serious as impostors committing identity theft in a timely fashion, they should hire more staff. Seriously.

Also, the huge influx of spammers and scammers could be drastically reduced if Twitter required approval before someone could be listed as a “follower”. After all, MANY accounts on Twitter are all about the numbers. With apparent pyramid schemes where the follow numbers seem to be paramount, I don’t understand why Twitter continues to allow anyone to follow anyone. I think this warmly invites the spammers and scammers who have a harder time on other sites (i.e. Facebook)… warmly invites them to take haven on Twitter.

I hope to write my “Why I Left Twitter” piece soon. I have not had the time or energy to deal with it given what’s been happening lately.

Without a doubt, if you are on Twitter and you’re not already following @coffeesister, I highly recommend doing so. Dorian is a wise, wonderful woman and I am very grateful to have met her via Twitter!! If “dissing Twitter outright” equates to not appreciating meeting you, Dorian, then there’s no way in heck I’m “dissing Twitter outright”! I am saddened by the things I learned before leaving Twitter. I saw much good accomplished on it and it was upsetting to see the flip-side of that.

Again, though, as Dorian pointed out… if it weren’t for Twitter, she and I wouldn’t have even met. That alone is enough reason for me to be very grateful for the good times on Twitter! 🙂

Thank you again, Dorian, for helping me (greatly) in a time of need and spending hours contacting my Twitter friends regarding the questions and confusion that arose regarding the Twitter impostor posing as me. Your assistance came at a time where I was overwhelmed with the task of notifying my Twitter contacts about what was happening and getting hammered with questions that I was unable to answer at the time. Your help was really invaluable, Dorian. Thank you!!


13 HeadacheSlayerNo Gravatar { 11.30.09 at 7:24 pm }

I’m definitely sorry to see you go, but totally understand. I’m grateful for your blog and your friendship!

As to my own Twitter experiences…good and bad. Mostly good, which is why I stay. I wound up going private around the whole Dave Ryan fiasco and that has made the experience MUCH more enjoyable for me. But I understand why others would not choose that option–it does limit who can find you. And I had a person who is no longer my friend take some of my tweets personally and rip me apart on her blog. I had to block alot of people, not knowing who I could trust anymore.

But I’ve met more wonderful people, such as yourself, this way, and therefore it’s been a blessing. I’ve cut back on stuff so it’s not such a time-suck 😉

Do take very good care of yourself, know I think of you fondly and will be reading your blog 🙂
.-= HeadacheSlayer´s last blog ..GoodReads Book Review: A Little Bit Wicked =-.

14 JeanneNo Gravatar { 12.03.09 at 2:14 pm }


Thanks for sharing your Twitter experience. I’m glad making your Twitter account private is working better for you.

Wishing you well.


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