ENDO Messages for January, 2003: Sponsorship and censorship

Sponsorship and censorship

From: Lone (anonymous@obgyn.net)
Fri Jan 17 06:17:48 2003

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HI everyone!

As Lea said: this is a good discussion, and it will not be shut down as long as it remains as sober as it has been so far. My only previous concerns in this forum has been when people have been slagging each other off with personal comments, which is so unnecessary, as opionions will inveriably always differ. This has not happened so far in this discussion, so it is not being censored. I think this is fair enough, don't you?

Now I shall add my comments: Firstly I just want to say that I am the current (not former) chair of the Danish Endometriosis Association (Endometriose Foreningen), but that this is an independent, national association and is not formally affiliated with the EA. It works with any other endo group which will collaborate. I hope I am not bias, but I guess we all are to some extent in anything that we do – our experiences alone makes us bias (but this is a different, philosophical discussion).

My personal bias is towards helping women with as much (free) information about endometriosis which I possibly can so that they are able to make as educated and as informed a choice as possible about their treatment options. In the Danish association we do this by providing written materials, by maintaining a website, and phones lines to answer questions. We arrange regional and national meetings for members and non-members, get information into the press, and are represented at national meetings for doctors and nurses. In addition, I travel to medical conferences all over the world to convey the message from women with endometriosis to practitioners, and am known by physicians as "the patients' advocate". These activities cost money that cannot always be covered by membership dues alone, and thus we – like most other of the established endometriosis associations around the world – accept money from sponsors, including pharmaceutical and surgical instrument companies. We do have a strict policy however, which means that a) we never ever advertise for a company or its product (neither on the web nor in our newsletter), and b) we acknowledge all donations (amount and company) in our newsletter. Some companies have a problem with that (ie that we will not advertise) and thus have refused to sponsor our activities. So be it.

Secondly, I am the former European Representative of the Endometriosis Association, and worked for the organisation for five years. Since I no longer work for the EA, I really do not feel it is up to me to comment on their source(s) of funding. May I suggest, however, that those who have concerns about the EA's funding and the advice they provide, contact the EA directly for their comments? The same goes for the ERC. The idea of having their official statements posted in this forum may be a good one.

Personally I have always felt that the EA has provided unbias information (to the extent that any of us can), and has taken care to mention all potential treatment options in their materials with the view that – and let's face it, it is true – some treatments work for some and not for others. Lupron has worked well for some (several women that I know swear by the drug) whereas others have had hideous side effects and consequences (I cannot comment from personal experience, as I have never tried it).

Finally, I want to make it absolutely clear that whilst obgyn.net does accept advertising fees from companies, then this is the only way a website such as this can survive. Information may be free to you, our users, but regretfully it costs money to produce it, so income has to be generated. This is a fact of life in any business. Our editorial boards are made up of physicians, who may have differing opinions – and opinions which may differ from ours too – but in the spirit of providing as much information to docs and women about various as diseases as we can, it is only ethical to have that breadth of opinions and information available, even if we do not agree with the conclusion of every single paper that is published. This is why we provide discussion forums (free of charge), so that all views and experiences can be represented.

Whilst companies sponsor various forums, including EndoZone.org, then we remain independent as editors, and I for one have been given complete editorial control of EndoZone.org, with no input nor conditions imposed from any of our commercial sponsors. There are no "conditions" at all associated with my position here. (I would no be here if there was). I am in turn "kept in line" by an editorial board, which you can see represents both surgeons, medics, general gynaecologists, and nutritionists from all over the world, who specialise in endometriosis, in order to ensure the information we provide is of good quality ...and that those who may disagree with a paper, can voice that opinion and have it published alongside.

One of my goals this year is to expand the board to have more complementary practitioners represented, as well as representatives from national endometriosis groups around the world.

Anyone, doctor, nurse, scientist, lay person, etc, can submit papers for publication on Endometriosis Zone, for the board's approval. We have also just launched The Coping Zone, edited by Ellen Johnson, whom many of you may also know from forums such as Witsendo, which provides news from the different groups around the world, as well as papers with "tips and strategies" for living with endometriosis (free of charge). We have done this because we feel strongly that we all need to be armed with as much information as we can to deal with this disease.

I hope you are all happy with these replies and that your concerns about "censorship" are relieved. This is a good discussion and let's see if any conclusions come out of it too. We do not all have to agree, but it is interesting to see the differing views.

This response got a bit long-winded, but I felt there were many questions that needed answering, and hope that I have managed to do so. I am happy to take comments offline too if anyone would prefer that – lone@endozone.org

Best Lone

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