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Endometriosis Advocacy and the Media

Today, I received excellent news from fellow endometriosis patient, Diane Neal, PhD!

One of the letters to the editor recently sent to The Intelligencer (regarding the article discussed in these prior posts Media: Endometriosis Misinformation (Edited) and Endometriosis and Media) was published today. Hers!

This is wonderful news for endometriosis patients, many of whom have been writing such letters to the editor in the last few days.

It is very heartening to know that our voices are being heard and it is exciting that The Intelligencer has printed this letter (headline titled by the paper: “Corrections in “The doctors didn’t even examine me!”)

I am writing about the misinformation provided in the article “The doctors didn’t even examine me!” by Dr. Gifford-Jones, posted on Feb. 4. As a person with very severe endometriosis and a history of ovarian cysts, I was appalled to read that Dr. Gifford-Jones thinks that (1) endometriosis can be diagnosed by a pelvic exam, and (2) the nature of ovarian cysts can be diagnosed by ultrasound.

Endometriosis and ovarian cysts can only be diagnosed by a laparoscopy. I also noted that comments on the article have been closed; hopefully this was not done because of the patients who were starting to correct Dr. Gifford-Jones’ facts. Please see, for example, the Endometriosis Association’s website to confirm the need for diagnostic laparoscopy (Endometriosis Association).

Endometriosis is a widely misunderstood, misdiagnosed, and stigmatized disease. Please do not further hinder the plight of endometriosis sufferers by disseminating incorrect information.

Diane Neal, PhD London, Ont.

The publication of this letter to the editor to The Intelligencer is excellent news because there have been so many occasions where endometriosis patients have written in to various news media outlets about errors regarding endometriosis and been ignored. This time, our voices were heard and feedback about endometriosis misinformation was printed in the same newspaper that had published errors just a few days ago. This is wonderful news!

Yesterday, in my second letter to the editor of The Intelligencer, I included the following petition. I would like to think that the petition didn’t hurt our chances of getting a letter to the editor published. That means if you signed this petition then you helped in our effort to correct the misinformation that The Intelligencer had printed about endometriosis.

If you haven’t signed the petition yet, just click the link below:

GoPetition

I think we should capitalize on this success by getting momentum going so that any time we see endometriosis misinformation in the media, we will band together (as we did in this case) and send in letters to the editor, comments to the online article, etc. This case is a model for what we can do in the future when similar endometriosis misinformation stories appear in the media.

We can make things better by working together! Thank you very much, Diane, for writing a letter to the editor that got the attention of The Intelligencer. Also, thank you to everyone who commented to the online article and/or wrote letters to the editor in this case. By working together to put pressure on this newspaper, we succeeded. The newspaper printed a correction, in the form of Dr. Neal’s letter to the editor. This is a milestone considering how many times in the past many of us have written in to various media outlets expressing our concerns about endometriosis misinformation.

Let’s use this formula in the future. If any of us sees an article that spreads endometriosis misinformation, let’s bring it to each other’s attention. Then, let’s post online comments refuting the errors if that is an option (as it was for this article before the comments were closed). Let’s also write letters to the editor. Finally, in cases like this, I plan to send the link to the online petition (as I did when I wrote my second letter to the editor this time). Let’s keep spreading endometriosis FACTS and do what we can to prevent the spread of endometriosis misinformation.

If we work together, we can improve the way endometriosis is covered in the media. It’s not going to change overnight… but I DO believe by working together that we CAN make a difference!

Thank you!


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis Advocacy and the Media

16 comments

1 Jannie FunsterNo Gravatar { 02.10.10 at 7:26 pm }

Now that IS good news!!

ha.

whoopity-whoo!!

2 AvivaNo Gravatar { 02.10.10 at 8:37 pm }

Yay! I wonder if it made a difference that Ms. Neal is Canadian. I don’t know if she’s local to the paper, but I know that can make a difference sometimes with papers and broadcasters. They often care a lot more what the locals think than what someone in another state or country have to say. But whatever made the difference — YAY! :-)
.-= Aviva´s last blog ..Eating Out, Gluten Free =-.

3 StephNo Gravatar { 02.10.10 at 8:39 pm }

YAY!!!

Thank you Diane Rasmussen Neal! Thank you Jeanne! Thank you everyone! We’re rockin it, kickin down the disinfo wherever we can find it.

Who needs respect and compassion? WE NEED RESPECT AND COMPASSION.

Who needs the truth out there? WE NEED THE TRUTH OUT THERE.

Love to my sisters…
.-= Steph´s last blog ..Antiangiogenic drugs to be developed to curb rogue cell growth in endometriosis? =-.

4 AllisonNo Gravatar { 02.10.10 at 8:43 pm }

Hooooray!!!!!!!!!!!!!!!!!!!!!!!!!!
.-= Allison´s last blog ..Weird Weekend =-.

5 EndochickNo Gravatar { 02.10.10 at 10:46 pm }

To an outsider, this is just a letter to an editor. To the endometriosis community, this is acknowledgment and awareness. It’s the realization that with unity is strength. Together our voices were heard thanks to Dr. Rasmussen Neal. Let them never be silenced.

Thank you, Diane Rasmussen Neal, PhD

6 DianeNo Gravatar { 02.10.10 at 11:38 pm }

I’m so glad I could help! I couldn’t believe they published it. I’m sure that all the letters that they received from all of us added up, and they probably thought, “OK, let’s give in and publish this one from the Ontario ‘doctor.’” :-)

Diane Rasmussen Neal, PhD :-)

7 SonjaNo Gravatar { 02.11.10 at 12:24 am }

Yay!!!!!!!!
.-= Sonja´s last blog ..When Endo Sisters Unite: Victory is Ours! =-.

8 PoobaNo Gravatar { 02.11.10 at 12:44 am }

Jeanne that is just awesome. To actually have an impact must feel great! I mean, they really do read comments and concerns!

Woot! Woot!!!!

9 JeanneNo Gravatar { 02.11.10 at 11:39 am }

Jannie:

Yes, it is very good news!!

Aviva:

I’m not sure what made The Intelligencer decide to publish Dr. Rasmussen Neal’s letter but I’m very glad they did! I’m hoping that we can replicate this success in the future!

Steph:

Isn’t this just wonderful news? Yes, thank you Dr. Diane Rasmussen Neal! Yes, thank you everyone! We’re making a difference and making our voices heard. Our letter writing has finally paid off… in the form of a media outlet hearing our voices. When is the last time any of us saw that happen? Ever? This is great news!

Yes, we need respect and compassion! Yes, we need the truth out there!

Yes, Steph, if we all work together and share the love we have for each other as fellow patients with this challenging illness, we all stand to benefit. ;)

Allison: Hooray indeed!!!!!!!!!!!!!!!!!!!!!!! ;)

Endochick:

You hit the nail on the head. This is far more than a simple letter to the editor. You are right. To the endometriosis community, having a letter to the editor published that corrects errors made by the gynecologist who wrote the erroneous article is huge! I agree this is acknowledgment and it increases awareness of endometriosis FACTS. This is the first time I have ever seen a media outlet actually listen to the voices of women with endometriosis… despite so many letter-writing campaigns before this. Someone finally listened to us! Yes, with unity there is strength! Yes, Dr, Rasmussen Neal’s letter got the editor’s attention and this is so exciting! We’ll never know if the editor took a moment to look through the heartbreaking comments on the endometriosis awareness petition or not but perhaps they actually did take a moment to look at some of the comments from the hundreds who have signed it. Let our voices never be silenced, indeed!

Yes, thank you Dr. Rasmussen Neal!

Diane:

You have no idea how excited I was when I received your message that The Intelligencer had published your letter! This truly is a milestone! After all of the letter-writing campaigns in the past to various media outlets, your letter to this paper got printed! I don’t think the flood of emails they received from endometriosis patients hurt. Whatever it was that prompted them to print your letter, I’m just happy that they did! :)

Thank you, Dr. Rasmussen Neal!

Sonja:

Yay is right!!!!!!!!!

Pooba:

It is so awesome! We have written so many letters to so many media outlets over such a long period of time. To have them finally print one is just great! They must have read at least some of the comments emailed to the editor if they printed this. I think that we were hard to ignore in this case. We organized a pretty strong contingent of patients to write letters to the editor. I’m very grateful that they printed Dr. Rasmussen Neal’s letter to the editor! From when I started blogging in June 2008 until now, I have been involved in countless letter-writing campaigns concerning endometriosis misinformation in the media. This is the very first time I have seen such a response from the media. This is huge! ;)

~~

Jeanne

10 Dorothy StahlneckerNo Gravatar { 02.13.10 at 2:29 am }

This is great news, together we are able to accomplish so much.

Dorothy from grammology

.-= Dorothy Stahlnecker´s last blog ..Internet Dating soars: hot stares out, love-at-first-click in? =-.

11 JeanneNo Gravatar { 02.13.10 at 3:12 am }

Dorothy,

Yes, this is truly beyond great news because endometriosis misinformation in the media is absolutely rampant. The article in question here could leave the mis-impression not only of how endometriosis is diagnosed but how other conditions (such as ovarian cancer) are diagnosed.

As an ovarian cancer survivor, I’m sure you can appreciate that if a physician were to misdiagnose a patient with endometriosis when the correct diagnosis was really ovarian cancer (due to him/her not following proper protocol for establishing a diagnosis), valuable time could be lost for getting the patient proper treatment.

The scariest part of this article to me was that I personally could see its potential for contributing to actual deaths. While that may sound melodramatic, that is my perspective based on how it was worded as opposed to what I know about the topics discussed in the article.

The fact that the author of the article in question is a gynecologist (the irony!) just complicated matters even further.

For years, we endometriosis patients have done letter-writing campaigns in cases like this where articles had misinformation in them… to no avail. To have a letter to the editor which corrects the initial article actually get printed in the newspaper is a massive victory!! :)

Jeanne

12 Interesting posts, weekend of 2/14/10 « Feminists with Female Sexual Dysfunction { 02.14.10 at 5:54 pm }

[...] related, some of my readers here have endometriosis, and so here is another one from Jeanne about Endometriosis Advocacy and the Media. There’s more health-related blog posts this week, including Ms. M on Living With Chronic [...]

13 JeanneNo Gravatar { 02.15.10 at 4:42 am }

K,

Thank you for sharing this link with your readers. It was wonderful to finally have a “win” regarding endometriosis and the media this week!

Jeanne

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