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2/08/2009

I'm Still Offline To Rest But I Wanted To Send You A Great Link To A Fellow Blogger Who Wrote About The Exploitation Of Endometriosis Patients

As I mentioned in my previous blog post, Saturday, January 31, 2009 "Jeanne's Endo Blog" Is Offline Indefinitely (Starting Now)..., I need to slow down on blogging for awhile and get some rest!!

For now, I wanted to post a brief update about my health situation.

While I'm online, I also wanted to give readers a link to a great blog post written by Melissa Ralston regarding the topic of exploitation of patients. This is a hot topic because there are so very many scammers going after chronically ill patients and health bloggers. Melissa's post talks about this troubling situation regarding endometriosis scammers.

Sadly, while I have been trying to rest up, the scammers are as busy as ever. One of them posted anonymously to my blog with comments that I have no intention of publishing!! These comments mentioned fibromyalgia and endometriosis.

All chronically ill patients and all health bloggers are potentially vulnerable to scammers who exploit patients and bloggers.

The comments posted to my last blog post were regarding a "treatment center" that I will not name. I'll just call it "treatment center" in place of its name because I'm not going to promote it by even typing its name on my blog. In other words, I won't even type the name of it to complain about it.

This commenter started by telling me (the capital letters below were theirs):

"BE SURE TO RESEARCH AND GET THE FACTS STRAIGHT"

The tone of the comment posted to my blog was essentially that I need to do my research and not be one of the ones who is stealing people's hope from them by steering them away from this "treatment center" that they were raving about.

So the implication here is that if I don't publish their anonymous comment singing the praises of this "treatment center", then I'm going to join the rest of the people who they claim are stealing people's hope by discouraging them from seeking treatment at this "center" making such outrageous claims.

I would like to go on record as saying that I don't advise people on where to get treatment for any of their illnesses. I have never advised patients where they should or shouldn't go for treatment for any conditions.

This commenter's remarks were written as if I need to "do my research" and proceed to publish their comment raving about this "treatment center"... or risk being responsible for people losing hope and committing suicide! (Read on to see their troubling comment about suicide).

Again, these inflammatory comments were posted in reply to my previous blog post about being very sick!

Here is another snippet from the anonymous commenter to me:

"If you are too sick or too weak, (I hope and wish you well) Perhaps you can ask a close friend or family to help you with this."
-- Anonymous blog commenter


Did they read my last blog post that said my husband was helping me out by moderating comments while I was sick and think that maybe he'd just blindly post their comment? This commenter went on to advise me to follow his/her directions and check out this "center". Read what he/she said:

The doctor's at the ["center"] are saving lives. Don't let the others steal your hope. Many are truly well and this could be you too.

It saddens and angers me that there are companies and individuals out there exploiting patients and promising unrealistic treatment results for chronic illnesses such as fibromyalgia and endometriosis.

The person or center that posted to my blog on February 6th had the gall to try to turn people who have spoken out against these scammers into the "bad guys" by suggesting that these brave people (who have spoken out against those who exploit patients) are responsible for patients committing suicide!

Here are 2 more phrases from the anonymous comment I will not be posting:

The comment posted anonymously to my blog on February 6 that was in support of a "treatment center" went on to claim:

"people come in wheelchairs and leave walking and dancing"

This same anonymous comment stated:

"lies are being spread and people are committing suicide because of lost hope"

This last portion of the anonymous comment appalled me. This commenter basically insinuates that anyone who speaks out against this "center" is somehow responsible for people committing suicide! (To be clear... the "people are committing suicide" comment does not refer to any specfic people. This statement is just haphazardly thrown out there by this commenter to my blog).

I want to be clear that I know of no one committing suicide or thinking of committing suicide. This inflammatory remark by the commenter is part of the twisted effort to promote this "treatment center".

I've seen a lot of scams regarding chronic illnesses since I began blogging last June but this is especially upsetting. This anonymous commenter is using the word suicide in an effort to get people to seek treatment at this "center"??!!?? This is totally outrageous!

If you are confused, trust me, you would still be confused if you read the entire comment posted to my blog.

For those who did not have the benefit of reading the entire comment, let me just put things in context and say that I am aware that many patients have reported this "treatment center" to authorities and that the Attorney General of the state which hosts this "center" has apparently done some investigation into this place of business. I do not know the current status of the "center" legally. I just know that many patients have complained about it.

Having read the entire anonymous comment posted to my blog and having concluded that there is no way I will post it to my blog... even to rip it apart, let me just say that this commenter would have me and my readers believe that there are people who are keeping patients from obtaining treatment at this "center" and that these patients' lives are being put at risk (of suicide) by those who are speaking out against the center!!

I know this is confusing because I'm quoting snippets of the anonymous comment. I apologize for the confusion but there is no way I would feel comfortable publishing the comment. So bear with me.

The bottom line is that I do not know how some people sleep at night!

It is bad enough when scammers try to fleece people out of their money by scamming them with "treatments" that are talked about as virtual cures. That is shameful enough! But to go around posting comments on people's blogs about suicides? It is beyond the pale. For someone to try to use my blog to get people to seek treatment at this "center" by implying that suicides are happening due to people being stopped from seeking treatment at this "center" is just mind-boggling to me.

The bottom line is that this very inappropriate comment was posted to my blog, I will not publish it, and I am sharing this story with all of you so that you can be on the lookout. If any person or "treatment center" approaches you or your blog with wild claims about leaving your wheelchair to go dancing, please be aware that some people will say anything to make money.

I can't tell you how upset I was about this comment to my blog. In my experience, anytime a scammer like this approaches me, he/she usually approaches my fellow bloggers as well. So please be aware that there are some very unscrupulous people out there!

MY UPDATE:

I am not sure when I'll be able to get back into the swing of things but I am still very exhausted and I still need more time. I'm still not going to be communicating via the many methods I usually do.

As some of you are already aware, last Friday night I had an adverse (allergic) reaction to a medication that I was taking and the on call doctor last weekend told me to go to the emergency room. The drug reaction was potentially fatal and last weekend was scary... but I made it until Monday morning when I talked to my regular doctor and we figured out what I should take in place of the drug I reacted to. Thank goodness for Benedryl! My doctor called in a prescription to replace the one I had discontinued and my body is getting acclimated to that.

I have been overdoing things, to say the least, for some time now and this wakeup call has forced me to step back, slow down, and recognize the importance of rest. Too many insomnia-induced all-nighters culminated in a very unpleasant weekend last weekend. While a drug allergy is what finally forced me to slow down, my body is unhappy with me for other reasons. I have not been getting enough rest and my body told me so this past few days in ways that could not be ignored.

For example, my body let me know it was ticked when I slept until 2:00 pm one day this week. (The only reason I even woke up then was that I had asked my husband to call at 2:00 to make sure I had woken up. As it turns out, I had not)!

In any event, it's going to be a bit before I'm back to blogging very much. I still have comments from a couple of weeks ago that are not yet moderated or replied to. The only comments that have been posted were to my last post before this one.

MELISSA'S ARTICLE:

I would like to ask readers to check out a very important article on Melissa Ralston's blog... Endometriosis: Facing the Battle Head-On. The article is called "The Exploitation of Illness". It's a topic near & dear to my heart because I have seen many heartbreaking examples of patients being exploited by fake doctors, people promising "false cures", and any number of other scammers who try to make money off of patients (in this case endometriosis patients but all chronically ill patients are vulnerable to these attacks).

In fact, I was troubled to find an upsetting blog comment dated 2/6 from one of these "exploiters" posted right to my previous blog post about me being sick! (There are times I just adore being able to click on the reject button). Apparently me being sick enough to drop blogging for a bit made me look vulnerable/an easier target for them. Incredible!

I had already planned on blogging this post directing readers to Melissa's article (above) before I received email today from an exploiter who posted comments to my blog that really disturbed me. While I was hoping for a bit more resting time before writing this post, I felt compelled to get this posted in light of the fact that a scammer had the gall to post a scam comment in response to my last post. Since I was planning to direct readers to Melissa's article anyway and since I do not have the energy to write my own detailed post about the many scammers I have encountered (be they endo scammers, fibromyalgia scammers, or scammers about some other chronic illness), I decided the best way to respond to the ludicrous comment that I rejected in response to my last post would be to direct readers here to Melissa's great post which references a great article by Hans Evers of the World Endometriosis Society.

Again, endometriosis is just one chronic illness that can make patients vulnerable to scam artists. Anyone with a chronic illness should stay skeptical, ask questions, and generally be on guard against scammers who prey on the sick.

Finally, here is a quote from within one of the sources for the article Melissa Ralston included in her blog post. I will close with this quote because it highlights the point I am trying to make... and to give credit where credit is due to Hans Evers, who took the time and energy to write about the topic of people who prey on endometriosis patients. Whether it's endo, fibro, or some other chronic illness... it is important for patients to be educated about the risks out there for people preying on them because they are chronically ill which can make them "easy prey".

"Women with endometriosis belong to a very vulnerable group, they should not be exploited".

Professor Hans Evers, World Endometriosis Society President


I would like to thank everyone who has left me words of encouragement and comfort this past week. I appreciate your support more than you know. Please keep being patient with me because I'm still on the road to recovery and need to take my time getting back into the swing of things.

Thank you to everyone for your patience! I am going to try to catch up the best I can but it's going to take some time. I have been pushing things too hard and I really need to pace myself better. My body has been screaming at me this week. I'm listening to its message. So I'll do my best to catch up without making myself sicker in the process.

P.S. I recently won several blog giveaway prizes and have not yet posted my thanks for them. I'm behind on everything. Stay tuned in a future post to hear about the great prizes that I won. I apologize for getting behind on posting these. Also, I'm sorry to Amanda for not yet posting the award she kindly gave me awhile back. I am really behind on everything but I haven't forgotten!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

12 comments:

Yaya said...

Those scammers are outrageous. Seriously, nothing better to with their lives then prey on those who are ill. I know you are spending a lot of your energy to stop them in their tracks, just don't overdo it!

Melissa Ralston said...

Dear Jeanne,

Great follow-up to the discussion I created earlier about the exploitation of illness. This highlights exactly what I was mentioning; that the vulnerable are those who are often exploited by those with the seductive charm and alarmism used to attract and play on our despair.

As someone who holds both a psych and a social work degree, I understand the very importance of hope in our society and exactly what a lack of hope leads towards. I did a university paper that was very well received on the topic of suicide amongst Aboriginal youth. While the events leading up to the suicides are not the same (health reasons vs. social/community factors), the underlying theme of a lack of hope is present.

There have been a multitude of studies done that show that when ill people feel that their concerns are being heard, that someone is willing to take the time to help them, and that they have an inner belief that things will improve, often their physical health is reflective of this. After all, when you take steps forward, no matter how small, towards something that you believe will help you, it's the progression of moving forward, of moving towards something, that can make a difference in how we perceive things. Just the feeling of being "heard" can improve our mind, can shift our thinking from the negative to the positive, and help us cope with life better. Hope in this way can be thought of as a placebo effect.

What hope cannot do is cure us. Hope alone cannot move us forward, we have to take the steps on our own to keep the hope alive. While I certainly hope everyday that they come up with a cure for the arm-length list of ailments I suffer, I know that I must also do whatever small steps are in my power to get me towards my goals. Yes, positive thinking does get me further through each day, but it doesn't change the fact that I live my life in daily pain. It does make it easier to deal with.

I'd be interested in knowing through *independent research* studies exactly how many of these people who have used this centre and claimed of significant relief, had the placebo effect happen for them. Is this idea separated out from the effects of the actual medical intervention when they conduct their own research studies? And if not, how valid would those research studies be in claiming that their particular treatment leads to such dramatic results?

Sorry if I sound skeptical, however it's always best to ask questions in the face of those who would try so eagerly to push their wares on the vulnerable.

Take care,
Melissa

Jeanne said...

Alicia,

Yes, it's absolutely incredible the stunts that people will pull trying to scam patients out of their money. It's very upsetting! You are right that I need to watch it. I could easily make myself sicker if I allow the scammers to really get to me. So I need to guard my energy!

Jeanne

Jeanne said...

Melissa,

Thanks for the great comment! You made some great points!

The comment that was posted to my blog on 2/6 (which I shared with you offline) is a classic example of how pain and despair absolutely can be exploited by those with bad motives!

Don't worry about sounding skeptical. I think it's actually imperative to be skeptical when one is bombarded with false cures and promises of treatment results that are not realistic!

Patients need to be wary of anyone who may be trying to prey on them because their illnesses make them vulnerable.

Jeanne

Sherril said...

I wanted to respond to Melissa's comment (below) by saying that in my opinion any relief experienced by those who attended this "Center" is from the daily massages they were given, along with the absence of all the normal stresses of home, as most people have to travel to a vacation resort area and stay there for weeks or months at a time in order to attend the "Center."

RE: the "Center's" own research - THERE IS NONE. They keep promising it's coming, but guess what? It never does. The closest thing to their own research would be what's in "the book". I did several blog posts about the "Center" and as part of my due diligence in researching it and its founder I purchased the book. I'm pretty sure that if you could see what they're trying to pass off as research in this book, you would laugh. Or cry. Or both. If you would like a better description of it, contact me directly.


From Melissa's comment:
"I'd be interested in knowing through *independent research* studies exactly how many of these people who have used this centre and claimed of significant relief, had the placebo effect happen for them. Is this idea separated out from the effects of the actual medical intervention when they conduct their own research studies? And if not, how valid would those research studies be in claiming that their particular treatment leads to such dramatic results?"

Jeanne said...

Sherril,

Thank you for the info regarding the "center". Your theories on how/why patients might sense some temporary improvement make lots of sense.

I'm not surprised there's NO research done by the "center": after everything I read on your blog combined with the garbage they tried to post in my blog comments.

I'm sorry you had to spend money on that book. It sounds like it was full of junk!!

Thank you for stopping by and clarifying things. Thanks. :)

Take care,

Jeanne

Aviva said...

Wow. I got either the same email you did or one very, very similar to it. Mine was sent via normal email, not as a comment to my blog, but I still recognized the dirty manipulation they were trying to do. While I was ready to just delete it as spam, what concerned me most was their use of an unusually spelled name that was very close to one of their detractors' names.

Anyway, I hope a break from your blog and anything else you need respite from is very restorative for you. And good for you for not even giving "the center" the pleasure of seeing their name in yet another place that someone doing a Google search might think the number of hits validates the scam.

Jeanne said...

Welcome Aviva!

I'm sorry about the upsetting message you got. I know how upset I was about the comment posted on my blog.

As I blogged about on this post, I find such instances appalling. Preying on patients is just... wrong!

Melissa Ralston's post about exploitation of patients contains some helpful info.

Yes, I forced myself to stay off my blog for a few days.

I wish I could say that I have everything under control... but I'm quite overwhelmed now.

Yes, I decided "the center" was specific enough. Their reprehensible manner of nonchalantly throwing around terms like suicide was very upsetting!!!

Yes, I chose not to give this unethical "center" airtime!

Thanks for stopping by. You're the 3rd person I have heard of who seems to have gotten this same letter. :(

Have a great night!! :)

Jeanne

Sherril said...

Huh. And they didn't even send me a copy. I feel kind of left out. ;-)

Sherrillynn (of the unusually spelled name.)

Melissa Ralston said...

Sherril - You're right on, if I had a 2 month vacation in Lake Tahoe and multiple massages done daily, I would certainly feel more relaxed. And when we're more relaxed we're able to cope so much better with the pain. But this is far from the reality that most of us must live with.

I've read through some of the links on your site to the specific doc, such as those who have visited such clinic. It's so sad to think of the last remaining hope that some of these people have had being completely shattered. When they say that people have avoided committing suicide due to the treatment received at the clinic, I'm thinking it's more likely to cause deep depression and suicidality after the return of the very symptoms that led to their depression in the first place!

I only wish that people like this were not allowed to operate in our world, however they are way too alive and well while the rest of us struggle to make it through another day.

Thanks Sherril for all that you do.

Jeanne said...

Sherrilynn of the unusually spelled name,

You are cracking me up...

I'm guessing that they didn't want to draw your attention since they know that you "have their number". :)

Keep up the great work you do exposing scammers and those that take advantage of vulnerable patients!

Jeanne

Jeanne said...

Melissa,

Regarding everything you said to Sherril... DITTO!!

Jeanne

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