This is what I got as a reply to the eMail I sent:

Hi Moofie,

I wanted to let you know that we have deleted your profile and posts on Wellsphere from your blog at http://moof.blogsplot.net/.

I wondered if you might like to connect with me personally, perhaps with a chat by phone.

Feel free to call me on my cell, XXX XXX-XXXX, or send me your number and a time, and I’ll be happy to call you.

Cheers, Geoff

Geoffrey W. Rutledge MD, PhD
Chief Medical Information Officer
Wellsphere Inc.
Dr.Rutledge@wellsphere.com
(XXX) XXX-XXXX

This was my reply:

Dr. Rutledge, I honestly don’t know what we’d talk about. All of the points I’ve made are true, and have been witnessed and/or experienced by a great many other bloggers.

At first, I just felt cheated after I joined, because you dumped me into parenting – exactly where I told you I didn’t want to be, and where you reassured me that I wouldn’t be. I was writing some pretty dark posts on my blog at the time, and those were being rss’ed into the parenting group! Even when I wrote to tell you about that, I didn’t hear from you. I had to stop blogging on my own blog until I could figure out what to do – those posts were never meant to be fed to a mommy group! I ended up having to manually delete myself from the Parenting group. The deletion worked, but that just dumped me into general medicine.

That’s when things began to be more than just personally disconcerting. Although I have absolutely no medical training or experience, you put a big blue EXP next to my name, and labeled me as a “Health Maven for the General Medicine Community”, and as a “Top Health Blogger.” This was enough to give unwary readers the false idea that I might be able to offer some “general” medical advice. Not only that, but you *encouraged* your “mavens” to answer as many questions as they could so that they could achieve “Top Health Maven” status. All of that with no consistent or official medical oversight! Looking through the questions, most went unanswered … and of those that someone actually did reply to, a great many were answered by people who have absolutely no business “practicing medicine”. At this time, if the answers given to your readers were compiled and researched, I think that some medical board someplace would be completely nonplussed to realize that a large (very large) part of the questions were answered by people who are not legally (or practically) qualified to give medical advice. And you, a physician, allowed (actively encouraged?) it …

I wonder how many people have been seriously hurt by this …

Even before I joined, I was a bit wary of the fact that alternative medicine groups were given equal footing and credibility as the science based medical groups. That shows yet another lack of concern for the well being of people who trusted you.

If you want to talk, I’m willing … but as I said above, I don’t know what more there is to say. Since you have taken the Hippocratic Oath, and receive immediate respect and trust from so many because of the initials after your name, I can only hope that you yourself were duped by someone further up the food chain. But even then, I don’t see how you could have not known what was going on.

Doris “Moof” Ballard
Berwick, ME
All Blogged Up: A Moof’s Tale
(XXX) XXX-XXXX

Anyone else have something to share?

This is the email I just shot off to Wellsphere … and for good measure, to their “buyers”. They should know that they’ve been duped.

To whom it may concern:

Please remove me, my blogs posts, and everything that concerns me, from Wellsphere. I will otherwise be forced to resort to tactics I’d rather not employ.

Once I realized that being a “health maven” meant that I was going to be ENCOURAGED to answer medical questions that I’m not trained or educated to respond to, and that there was no medically responsible oversight of what people were being “advised” to do … it really scared me. You put “Expert” and “Top Health Blogger” next to the names of practically every non-medical person in there, giving your readers a false impression of security and trust. That’s conscienceless … and if people were actually harmed, criminal. When seen alongside the sale of Wellsphere … it’s also a misrepresentation to both your bloggers, and to those who are buying Wellsphere, not to mention that it was a very dishonest way to make a buck on other people’s work and trust.

It’s sad to realize that Wellsphere turned out to be just another glorified blog scraper … and particularly dangerous one, at that.

Doris “Moof” Ballard
All Blogged Up: A Moof’s Tale

A few more interesting links:

Beyond Meds … via Robin from Survive the Journey

A Different Perspective on the Sale of Wellsphere via Dr. Val from Getting Better with Dr. Val

(Thanks for the TWEETS ladies!)

There’s a wave flowing across the medical blogosphere … and it’s gaining momentum!

Last year, I received some flattering emails from a fellow name Geoff Rutledge. I ignore the first few emails because I simply wasn’t interested, but when one of the emails mentioned getting to answer questions asked by other users, and having opportunities to ask some of our own, I imagined that it would be something like WebMD … and I joined. Dr. Rutledge was very kind and attentive until I actually bit … and then, well …

When I agreed to join, he wanted to put me in the parenting group. Sorry people, but I’m way too old to fit in that group – my kids have kids, I’m a bit old fashioned about raising children, and I simply do not approve of some of the more popular child raising ideas. I told Dr. Rutledge that I would join, but that I didn’t want to be in parenting – I wanted to be in the “Kidney Failure” group. He assured me that I would be.

When I logged on for the first time, I saw that I had, indeed, been placed in the parenting group after all. I wrote to the dear man, and asked him to please move me out of there into something more appropriate. No reply … no action. At the time, I was just coming back to blogging, and had written some pretty gnarly, dark posts. I was humiliated and disturbed when I realized that those posts had ended up in the parenting group’s collection. Dr. Rutledge had told me that each subject would appear in its own group – not so! I wrote to Dr. Rutledge again, this time expressing my desire to be removed from that parenting group a bit more forcefully. Still no reply.

In a fit of pique, I logged in and deleted my connection to the parenting group – wondering what would happen. I found that it just dumped me in the General Medicine Group instead. Poo! Again not my department … but at least better than parenting.

I did my best to answer questions when I felt confident enough with the subject, but that wasn’t very often. In fact, it began to bother me that no one seemed to be moderating the comments or the replies. I’m supposed to be a “Health Maven” in the “General Medicine” group … and I got my qualifications from …. a Cracker Jacks box? Wellsphere made it appear as if I was someone knowledgeable in General Medicine, and no one was checking in to make sure I wasn’t killing someone with bad advice! Dude! In fact, most of the questions which were sent in weren’t being answered at all, or they were being answered by numbos like me. Answers from real medical professionals were meager. Imagine if the readers took Wellsphere seriously, and actually trusted our replies!!!

Anyway, I had gotten pretty irritated with the place, and I began deleting their emails a while back. I had no idea what was going on until I saw Wellsphere come up over and over on Twitter last night, and decided I’d better take a peek. What I found out really put me off …

It seems that HealthCentral Network has acquired Wellsphere! Whoa! Wait a minute! That’s my blog content they’re selling! That’s not much different than what Bitacle was doing back in 2006.

My personal opinion of Wellsphere is not only are they thieves, they’re also dangerous … they let everyone and his brother give medical advice over the internet, with little or no moderation. They also lie about a person’s qualifications to give advice! Health Maven indeed!

“No, I’m not a doctor, but I did sleep at a Holiday Inn Express last night”

---

Here is a list of bloggers who are posting about Wellsphere … please take a look:

Getting Better with Dr. Val

In Sickness and in Health

Musings of a Distractible Mind

Rural Doctoring

Symtym

Doctor Anonymous

Kevin MD

Chronic Babe

Science Based Medicine

Six Until Me

Medi Medi Mary

Twitter Comments – through Vijay

And don’t forget the Dr. Anonymous show tonight at 9 PM
(Thursday the 29th of January)
… they’ll be discussing this very subject!

I expect that as soon as this post hits Wellsphere’s site, mine will look a bit like Six Until Me’s account! ;o)

When I first woke up this morning, any part of me that was sticking out from under the covers felt … frosted over. Now, that’s not new, since we’re in an old, drafty house, and have no regular heat … and – we’re in Maine … so, I didn’t think much about it, except to make a quick decision to not get up yet! ;o)

Anyway, a few minutes later, Doug and I were re-awoken by water dripping onto the shelf at the top of our waterbed headboard … and it was dripping long, loud, and fast! Ugh! Without thinking, I grabbed the little bucket that I always keep at the bedside, and tossed it to Doug (thank God I hadn’t had any queasy problems overnight, or he’d have gotten a real surprise!) and he quickly put it under the waterfall leak.

He wondered aloud if the pipes in the bathroom overhead had frozen … which I doubted, because they’re in the middle of the house, and although it goes below 40F (4.4C) in there, it seldom freezes.

Doug got up post-haste, threw his clothes on, and gingerly ventured out of the bedroom. Not only had the bathroom frozen, but the kitchen pipes were all frozen solid too. The sink has an irritating hot water leak which splashes all over the place, and it had also frozen, leaving the sides and bottom of the sink cased in a clear, lumpy sheet of ice. Apparently, the kitchen had gone well below freezing overnight. Brrrr!

I decided to blog about it … and that’s when I realized that I didn’t have any internet … *sigh*. Right about then the phone rang … it was my husband’s place of work putting off his return for yet one more week. He’s only worked about 4 days since two weeks before Christmas. So now he’s home until January 26 instead of the 19th.

Blog Friends, I lay back on my nice comfy waterbed and started laughing! Hey! What else can I do?

Anyway, the pipes are thawed, although I doubt I could do dishes or laundry, because those are separate from the sinks. Miraculously, nothing burst! Yay us! The wood stove has warmed things up enough so that I can’t see my breath anymore, although my hands are still cold, and I’m sure the rest of the house is still geezely uninhabitable a bit, ummm … frosty. My internet revived when the modem and router were reset … so no harm there, either. Except for an icy mess and a cold, rude awakening, we’ve had no permanent damage this time.

Anyone in a warmer climate looking for several (semi-permanent) house guests? *innocent blink*

Welllllll … here I am again with an update. All of the neat (and not so neat) stuff I wrote about earlier sort turned into a pile of dust, and up until last Friday, none of it had settled at all. Now, at least one of the issues has some sort of temporary solution, and I’ll share it with you as best as I can.

In November, I wrote about the pre-dialysis fistula and port surgery which had been put off from the 29th of October to the 17th of December. I explained that my poor nephrologist had been accosted by a nurse about scheduling it without consulting her first, and that was the reason for the first postponement. Well, I chuckled a little too soon – I got a taste of what he experienced … :p

In early December, I got a call from the local “PD nurse” (peritoneal dialysis nurse). She wanted to set a time for the instructions to begin. Although I was dreading the entire experience, it was nonetheless a relief that something definite was happening, and even more of a relief when I realized that I would finally be past the stage I’ve been worrying about for the last six years: the worrying about actually getting to ESRD and needing to start dialysis, and then the actual start of the dialysis itself, it would all soon be behind me. I would be able to settle in and try to adjust to the new reality. Those of you who’ve been long-time readers have probably noticed by now that things are not always quite that simple for me. Murphy has my number on his speed-dial list.

The conversation with the PD nurse started out really well. The date set for the PD training was from yesterday (January 12) through the 16th. We seemed to be flying through the details … until …

… She told me that they like to start at 8:30 AM. I told her that we didn’t have transportation at home until 3 PM, and that I’d still need time to get to wherever I was going. She asked all of the expected questions … could I get a ride … could I get my hands on another car … and so on … and to each question, with my heart sinking lower and lower, I replied in the negative. Still, I thought (hoped) that we would be able to work something out; it’s no small thing to be told that you won’t be able to do the type of dialysis which you’ve been planning on for years, and which would work the best for you and your family, simply because you can’t seem to set up the times for the training.

We went through a whole lot of talking, and with each minute, my heart sank ever lower. I won’t go into detail, but I will say that she lost her patience with me, although there was nothing I could do about any of the commuting situations. There were other problems, too, which I won’t go into unless someone actually asks for the sordid details. We communicated twice. The second time was a few days later when I found a way to jump through her first few hoops … but she immediately shot it down when she heard it.

By the time we were done speaking, (I mean, she was done speaking – as I was about to ask her another question when I heard a click. I don’t know if she thought we were done, but she hung up without warning) I was in tears. I realized that even if I could meet her requirements, I didn’t think I would ever be able to deal with her every other week for the rest of my life. I could certainly see why my poor nephrologist backpedaled so quickly when she jumped on him. Ouch!!!

I went ahead and canceled the surgery, since it became apparent that I was not going to be able to get the training I needed in time. I began calling other dialysis centers and asking them for information, and that was when I discovered that the PD nurse had lied to me on at least two very important points. Apparently, she just wanted me to do it the way she wanted it done … period. Being that this woman is the only PD nurse in our entire area, if I wasn’t able to jump through her sometimes arbitrary hoops, she could effectively stop me from having PD, and I would have to submit to HD in a dialysis center three times a week for the rest of my life. The thought had me vacillating between despair and anger.

A bit later, I got a call from my nephrologist, and we tried to decide where to “go” from the current position. At one point he said “You know, you’re going to have to take some responsibility for your own care” … say what? A new reason to not be fond of the PD nurse: I realized my part of our conversations had been misrepresented. I was quite upset that he even thought that I would take such a position, and the shock made me brave enough to tell him what had happened from my own perspective. After hearing only a few of the basics, he told me with an embarrassed chuckle: “[name] likes to be on top of things.” He also told me that there were things that she’d told me were necessary – which weren’t … one of the most important being that I would not have to drive all the way to Portsmouth every other week for what could be the rest of my life – once a month was all that was necessary. By the end of the conversation, I realized that I wasn’t the only person who thought the PD nurse was some sort of control freak, but the knowledge didn’t help my position: the most important hoops were still impossible for me.

Dr. M. and I agreed that we would discuss the matter further at my upcoming appointment. It had already been changed twice, because they wanted to see me before the surgery, and my appointment had been the day after the procedure. They moved my appointment with Dr. M. ahead of the surgery, and sent me a notice by snail mail, and whaddya know! The time and date were the same as an appointment with a different doctor, and both offices are just under an hour apart. Murphy, remember? Anyway, they set it for the for the 12th of December … a Friday. On that day, I already had two other appointments … one in the morning, and one in the late afternoon, and they were all in different towns. Well, I shouldn’t have worried, since the 12th was the day we were hit by the December ice storm, and over a million New Englanders lost their power for up to a week and a half. When I woke up that morning, I sat up in bed and peeped out the window … groaned … and went back to sleep. I wasn’t half as upset as I sounded, though! ;o)

When we got our power back, I called my three doctors to reschedule my appointments. I was dreading calling the nephrologist’s office, because that’s the sort of place that gives you a 6 month wait between appointments, cancels on you, and then sets your next one for 6 months later. With one remarkable exception, I’ve had some very bad luck with the office help over the years … but I’ve almost always had a good PCP who would pick up the slack.

[side comment] … that scheduling nightmare I mentioned above actually happened to me. It happened at a time when I was totally without a PCP, and the nephrologist was all I had. I simply couldn’t wait another six months to see someone. After about five years of struggling with this sort of thing, meds not faxed in, labs not faxed in, rude workers, etc., I left the group and went to a fellow who had his own practice. I hated to leave my nephrologist, because I really liked him, but I just couldn’t deal with the silliness anymore. Within 2 months of starting with the new fellow, he joined the first group! That meant that there was suddenly only one group of nephrologists in the area, and I was back where I started from. Did I mention Murphy? [/side comment]

There where no openings for a time that I could actually get there until the end of March. He didn’t wanted to see me before that, and I certainly agreed, but there were simply no openings. About a week before Christmas, or just a little more, my husband was laid off until the 19th of January. It was going to be a really rough Christmas. However, Murphy must have slipped up a bit, because having my husband home also meant that I’d have access to transportation at any time of day! I was finally able to get in to see Dr. M. last Friday … and we discussed a lot of different options. He convinced me to get the fistula, and see where we can go from there. He still wants to put me on a donor list, but I haven’t acquiesced yet, because I’m not sure that it would be the right thing for me to do. He also told me that it’s even possible to do HD at home, if I continue to have transportation problems. That was encouraging … and I’m glad he said that … because …

… On my way out of the office, I stopped to talk to the “remarkable exception” I mentioned earlier. I commented that I’d heard that there were no more doctors from that practice going to the dialysis center that’s only a short drive from my home. I wanted to know what was up. She told me that they’ve closed it down, and are now building a new dialysis center more than 20 miles away. I thought of how difficult it would already have been to get to the center that was nearby …

By the way, have I mentioned Murphy yet? Ugh!

So, that’s where we stand now. I expect to hear from the surgeon’s office any time, and they will make an appointment for me to see Dr. S. again. We’ll set a new date when I go. I will try to blog through the experience …

Hopefully the telling will be less convoluted, and I’ll be able to keep it short and sweet. Hope none of you got eyestrain. Actually, left out a lot of the story, or it would easily have been three times longer than it is already!