My 2¢ on some DRY EYE ZONE issues...

[MartyM1985]

Hey DEZ people.

So I haven't been a member here for long... only since the beginning of this year really. Yet, I've noticed something on the forum that kinda bothers me about this community, and I just wanted to share my 2¢ about it.


I think Dry Eye Talk has a problem with some members doing one of two things that, as a result, is affecting the greater community negatively and is also preventing some members from having a clear perspective on how to approach their future treatment of dry eye disease.

1. Members posting their own scientific conclusions regarding dry eye studies and then phrasing their conclusions as facts.
I have a major issue with certain individuals on here who are doing deep scientific research on dry eye disease, drawing their own conclusions on certain matters, and then stating their conclusions as factual evidence to be used when considering certain dry eye treatments as a patient. I'm not going to name any names, but it upsets me to read these "investigations" done by wannabe scientists/doctors on here who have never worked in the field, but are attempting to speak as an authority on dry eye disease. Posting potentially incorrect or inaccurate information, in my opinion, is the worst offense you can do on this site. In my opinion, if you are not an eye care professional or are sharing direct information given to you by an eye care professional, you should not try to connect the proverbial scientific dots regarding dry eye disease based solely on your internet investigations and then present them as factual conclusions. Because most of the time, really, you're probably getting it wrong.

2. Members poo-poo'ing & universally slamming conventional dry eye treatments because said treatments didn't work for them.
Look, I know a lot of us on here are angry and frustrated with the current state of their eye-health. I know many of us have tried EVERYTHING to get better, and it hasn't worked. But just because a certain treatment did not work for you does not mean it will not work for another person. I just get depressed when I see other (usually new) members literally SCARED to try certain treatment options because some of us are so angry that said options did not work for them and are only focusing on the negative regarding said experiences. Yes, you tried Restasis & plugs & other drops and they didn't help YOU, but that doesn't mean the next person in line shouldn't try them as well. It hurts me to read about people who are suffering at home and could be feeling better if they tried some of the conventional treatments, but they are instead being scared off by people's overwhelming negativity. Some people do get better. Sometimes, the conventional treatments work. I'm on month four of Restasis with plugs, and I have been slowly improving.

We just need to be mindful of these things when trying to help one another. I'll get off my soapbox now.

I really just want everyone to get better. Like, by tomorrow would be good. Then we could all go see IRON MAN 3 after having a few beers. That would be nice.

[Guest]

You definitely bring up some good points. I doubt this kind of thing will ever be completely eliminated from a forum like this though.

I think the best way to get a feel for what anyone has posted here is to go back and read a bunch of their old posts to "get to know them" better - you'll get a sense of how careful they are about the kinds of statements they make, how knowledgeable they are etc.

And if in doubt, do your own research into whatever someone else here is claiming and decide for yourself if you want to follow their advice or not.

Start with the DEWS report
http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

Fortunately, I think the benefits of this forum outweigh the downsides, by far, for most people who come here.

[robster]

Couldn't disagree with you more Marty. From what I have seen members tend not to do any such thing and our only voicing their opinion not claiming it to be any sort of medical fact. This forum has been a life saver for me and many others and as SAAG said the positives on this forum far far far outweigh any minor negatives.

[MartyM1985]

From what I have seen members tend not to do any such thing and our only voicing their opinion not claiming it to be any sort of medical fact.

Yes, most often you are correct. I am speaking about the wannabe scientists on here. People who are doing internet research and then drawing conclusions based solely on logic rather than experience or direct information from a doctor.

It is hard to explain without any names, so I'll give you a hypothetical.

"If Fresh Kote turns some patients' eyes red, then it must be causing greater inflammation in the eye, preventing the eyes from creating more tears. Therefore, Fresh Kote is inflammatory and should not be used by anyone."

See what I did there? It's a false statement, but it sounds right logically. That kind of stuff isn't good for this site.

[Guest]

Yes, most often you are correct. I am speaking about the wannabe scientists on here. People who are doing internet research and then drawing conclusions based solely on logic rather than experience or direct information from a doctor... That kind of stuff isn't good for this site.

I totally agree that in a perfect world no-one would come on here and post about stuff that turns out not to be true... but you've got to cut them some slack... this forum tends to attract those that have freakishly bad cases (like me, haha), and for people in this situation, even medical doctors often let them down and give *gasp* bad/incorrect advice. They're grasping at straws, desperate for answers, and they have little choice but to be "wannabe scientists" as you put it... if they wait for their doctor to cure them, they'll be waiting a lifetime. (Not saying all doctors are of no use... but dry eye isn't exactly an exciting thing to specialize in, and many of us have seen multiple doctors who simply dismiss you since your eyes don't look as bad as you say they feel). It's tough to find a good doctor with "our" kind of issues.

So sure, some people will err and think there is a connection or cause and effect relationship between 2 things when, in fact, there is not... but most don't go overboard with it, so not the end of the world. Now, if they went on, and on, and on, writing long diatribes about how right they are repeatedly, when, most everyone else can see that they are waaaaaay off base, that's another story. But luckily, those folks don't come around very much, or, if they do, they are reigned in and/or stopped entirely.

Most people will say something along the lines of "this worked for me, maybe it will for you too" or "I think this is true based on x,y, and z" and leave it at that for others to ponder... Maybe they're right, and maybe not... but no harm done really...

I look at it as this being a good place to vent, toss around ideas when mainstream medicine has failed to cure you, compare notes, and find out about new treatments etc. Then if anything is of interest, research it on your own and decide for yourself.

[littlemermaid]

Absolutely, SAAG and Robster

Something to guard against, Marty:

I have really no experience with your problem, but I would say look into PROSE lenses. That might be your remedy to keep your eyes protected.

I personally think Restasis does exactly what it promises... reduces inflammation in order to restore the natural tear flow cycle. But whether or not the patient's eyes still have the capacity to produce tears is still the ultimate question though. If the lacrimal glands are busted, one could be out of luck.

Do we really need a disclaimer? Isn't it clear people are talking from personal experience after trailing round loads of docs and everyone is here for mutual support? Also sometimes people are seeing very good and interesting professionals and are sharing the fruits but don't want to name the medics to protect them and that isn't immediately obvious, which is another reason my family keep up with the news here.

Very good point about people not trying treatments because they've read somebody else has had a problem with it. I've been worrying about the same. Now you've noticed it, if you see someone vulnerable suffering reluctant to try treatments because of something they've read, step in with some experience and positive encouragement.

Everyone here is a gutsy self-starter seeking out a way forward from this trouble, making good use of the global village, aren't they? This opportunity has saved my daughter's eyesight, hopefully.

People sometimes don't realise how different the aetiologies are when they are new here. Maybe we should all put it in the signature, like you and SAAG have.

Have you not seen Iron Man 3 because of the dry eyes? I wouldn't mind seeing Star Trek 2 again as a team-building exercise

[MartyM1985]

Absolutely, SAAG

Something to guard against, Marty:


Do we really need a disclaimer? Isn't it clear people are just talking from personal experience after trailing round loads of docs and everyone is here for mutual support? Maybe if you see someone suffering reluctant to try treatments because of something they've read, step in with some experience and positive encouragement.

I think it's true people sometimes don't realise how different the aetiologies are when they are new here, and that causes confusion. It might be very useful to put that in the signature, like SAAG has.

Have you not seen Iron Man 3 because of the dry eyes? I wouldn't mind seeing Star Trek 2 again as a team-building exercise

I preface all my opinions by stating they are my opinion. I also use the words "might" and "could." I don't speak in absolutes.

The users I'm describing DO speak in absolutes. They are attempting to speak as an authority based on their internet research alone. That's what I have a problem with.

[littlemermaid]

The warning triangle bottom left brings unhelpful posts to the attention of the Moderators if you need to. I haven't noticed them, sorry. Or maybe you could just write a kind and common-sense reply on the thread and pick it up that way.

Just to stick my neck out, Marty, you might like this on Tony Stark/Iron Man and post-traumatic stress http://www.hollywoodreporter.com/hea...es-tony-520868 What we have here on Dryeyetalk is a safe place, well worth supporting and belonging.

[Guest]

I preface all my opinions by stating they are my opinion. I also use the words "might" and "could." I don't speak in absolutes.

The users I'm describing DO speak in absolutes. They are attempting to speak as an authority based on their internet research alone. That's what I have a problem with.

You'll drive yourself crazy trying to change people. I prefer the use of more precise language also, but with so many people coming and going on a forum like this, it'll never be the case that 100% of users will do so. Just have to go with the flow

[spmcc]

Another thing to keep in mind is that some people's first language is not English.

[Rebecca Petris]

Coming a little late to this party

Very good point about people not trying treatments because they've read somebody else has had a problem with it. I've been worrying about the same. Now you've noticed it, if you see someone vulnerable suffering reluctant to try treatments because of something they've read, step in with some experience and positive encouragement.

I totally agree that that is a problem and I agree even more with LM's approach to addressing it.

I spend a lot of time on the phone with people... many of whom have read stuff on DEZ but haven't participated. You never know whether a certain post on DEZ that is really, really wrong might be the only thing they read on a particular topic because it's what was there that day or what came up first in a complicated google search. Can't tell you how many people I've spoken with who have written off treatments solely because of some comments they've read here and that's so, so unfortunate. So I tend to feel very protective of our members/readers though of late years I've let the board become much more laissez-faire than it was originally.

Marty, when you're concerned about a particular post, please use the report post button. It really, really, really is helpful. Over the years we've occasionally had members who habitually used an authoritative 'voice' (I don't know any other way to describe it!) and constantly made dogmatic statements that no disclaimer would really make a difference to anyway. I have on rare occasions removed members (kicking and screaming) for this reason. I hate doing it and use it only in truly exceptional cases. Where possible I'd rather counteract dogma with the voice of reason. What motivates me to occasionally do something drastic is when it's eating way too much time/energy or when I see firsthand that it is harmful to vulnerable readers. The calibre of discussion here is sometimes such that it's easy to forget there are many readers/members who have a harder time sorting out information and opinions on complex medical topics.

[dryeye4ever]

you are right marty. I have thought i knew things about dry eye and stuff but no.... I thought lactoferrin was the main cure for dry eyes but its more complex. Though lactoferrin is something to focus on. We all claim to be nutritionists of ocular health but there are a lot of thigns we dont know and i apologize if i stated false things. Pessism is also something i always focused on with dry eyes but life is too short, lets forget about pessimism.

[MartyM1985]

you are right marty. I have thought i knew things about dry eye and stuff but no.... I thought lactoferrin was the main cure for dry eyes but its more complex. Though lactoferrin is something to focus on. We all claim to be nutritionists of ocular health but there are a lot of thigns we dont know and i apologize if i stated false things. Pessism is also something i always focused on with dry eyes but life is too short, lets forget about pessimism.

Truth be told, I actually wasn't referring to you at all.

[browneyesblu]

Marty I totally agree with you, littlemermaid and Rebecca as far as scaring vulnerable people away from treatments that may help.

As far as your other concern, maybe some people do tend to be a little dogmatic, but I haven't seen one post on this site that struck me as having been written by someone who was not genuinely trying to help others.

When someone spends the time, effort and in some cases, cash, to research dry eye issues, and then posts what they have learned for our benefit, it is an act of generosity. My concern is that if we beat them up too much because we don't like their writing style, they will stop feeling so generous. A lot of that information is very valuable.

[Guest]

When someone spends the time, effort and in some cases, cash, to research dry eye issues, and then posts what they have learned for our benefit, it is an act of generosity. My concern is that if we beat them up too much because we don't like their writing style, they will stop feeling so generous. A lot of that information is very valuable.

Agreed... they may be wrong about their conclusions sometimes, but I'd rather see them post it in case they are on to something, compared to having them hold back out of fear of a backlash or something.

I think Little Mermaid's approach is perfect!