Thursday, January 29, 2009

Carnival of MS Bloggers #28 - Internet Forum Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Forums and Message Boards for the Chronically Ill

Many readers are aware that I participate in various MS communities online and am somewhat skeptical of the quality of information and support which is often given. You may also be aware that I try to keep up on research related to multiple sclerosis and share some of that with readers.

As important it is to know 'how' to read the latest news or announcements of medical advancements and clinical trials, it is equally important to know how to find credible, reliable objective health information on the internet.

Something which we don't often think about is the quality of the online communities in which we choose to participate. Some are moderated and require that every post be approved by a human, but some have little to no moderation in place. Then there are the forums which are designed to collect and analyze patient data and behavior- see "what can happen when patients have access to one another's data."

This Carnival edition is meant to focus on the drawbacks and dangers of online forums for patients, not to highlight the benefits. We will need to feature the positives in a future collection of posts. First, the bullies.

by kmilyun
The first open use cyber-bulletin board I remember using was way back when (hear my bones creaking here) . . . a Prodigy one that was accessible via a V.22 1200 bps modem. It had a simple menu with four items and you had to wait a day for any reply to be posted. It posted on a board for recovering alcoholics. And, here is the point, there were “trolls” and “bullies” then and there are “trolls” and “bullies” now. They just have more available means and mediums to flourish in.
Recently I have joined a few multiple sclerosis forums. I don’t post - I lurk. Why? I do not choose to hang myself out there and be annoyed by the trolls and bullies. I have learned a lot reading through the posts. Some forums are better moderated than others and I have to apply some common sense in distinguishing the facts from the B.S.

Just remember you are never as anonymous as you hope online and words do hurt and there are alligators out there waiting to snap.

Cyberchondria has been on the mind of Nina lately.

There have been a few articles over the last couple weeks on how people are using the internet in relation to health issues. Microsoft published a research study. The results are interesting:
Our results show that Web search engines have the potential to escalate medical concerns. We show that escalation is influenced by the amount and distribution of medical content viewed by users, the presence of escalatory terminology in pages visited, and a user’s predisposition to escalate versus to seek more reasonable explanations for ailments. We also demonstrate the persistence of post-session anxiety following escalations and the effect that such anxieties can have on interrupting user’s activities across multiple sessions. Our findings underscore the potential costs and challenges of cyberchondria and suggest actionable design implications that hold opportunity for improving the search and navigation experience for people turning to the Web to interpret common symptoms.
The research has been getting some media attention from NY Times and Guardian.
I agree and disagree with it. I don’t believe I escalate my symptoms. I educate myself on what I am experiencing, but not in an unhealthy way. I do think I am probably on the abnormal side of the fence though. From reading message boards on MS, I totally see this happening on a regular basis. Heck, Tom had an eye twitch and he thought he had brain cancer. It happens everywhere.

I know that doctors are recommending people not read about their condition on the internet. My doctor warned me and agreed with my opinion of MS message boards. There are a lot of people that get some tingly feet and think its MS. There is a long jump from tingly feet and MS. Maybe if I did escalate my symptoms I would have found out about the MS 3-4 years ago.

Which brings up an interesting point… would I have made different choices if I know about MS 4 years ago? I think I would have which scares me a bit.

Finally, Rebecca says that for those with MS "internet discussion boards and chatrooms are usually a bad deal."

Unfortunately, for those with MS [ed. some of us], the use of Internet discussion boards and chatrooms is usually not a good idea. One exception is looking at these boards and chatrooms as a way to possibly uncover the side effects of medications and treatments. For example, some of the drugs for MS cause hair loss, yet this is often not mentioned by doctors or pharmaceutical companies. Other than using the boards and chatrooms to find information on side effects, the boards and chatrooms are of limited value and can even lead to unwise and unhealthy decisions.
These problems occur in part because the online discussions are often frequented and even controlled by those who, because of psychological problems, are only imagining they have MS. Problems also occur when fake doctors find their way to these discussions, when sellers of quack cures are looking to make a quick buck, when hustlers prey on the natural sympathies most of us have, because group members sometimes encourage others to engage in unhealthy behavior and because the knowledge of group members is often dangerously limited.
The problem with control of discussions by individuals who do not have MS occurs because some individuals with psychological problems seek attention by faking MS symptoms. Such individuals have often been told by their doctors and neurologists that they do not have MS but these individuals will often persist in saying that they have “probable MS”.
Such individuals are not necessarily easy to identify in Internet discussion groups. Often they will come off a charming and supportive–at least until they are no longer the center of attention. The advice they give, however, is usually poor. Because they seek drama, they encourage others to have dramatic treatments. Why take an aspirin when a chemo drug may be thrown at a problem? These MS fakers do resort to bullying to get their way. Unfortunately, bullying is common in Internet discussions.
Other fakers in discussion groups include fake doctors. These individuals will call themselves doctors but they are not medical doctors and have limited knowledge of multiple sclerosis. Just because someone calls himself or herself a doctor, does not mean he or she is actually a medical doctor. The person may have a mail order PhD degree or some other degree actually requiring little training.
The fake doctors may be looking to make money off of desperate MS patients. After they have participated for a short period of time, they may offer a miracle cure for sale. Or they may encourage discussion participants to use their services.
Others also participate with an eye to quick profits. It is not uncommon to see hustlers trying to sell various miracle juices or supplements that supposedly cure MS. Or a more sophisticated ruse is to build a web site, sell advertising based on the web site and then use discussion groups to generate visits to the site. In this case, page views at the web site add up to additional advertising dollars.
Finally, there are those who try to get money out of others without offering anything other than a good sob story. While many with MS are impoverished, a wary attitude towards those requesting money from other members of discussion groups is appropriate. Some of those requesting money do not even have MS and should be out looking for a job.
Another group of problematic individuals active in Internet discussions are individuals with addictions–usually alcohol, drug or food related. These individuals are problematic because they will tell newcomers that factors such as drinking alcohol or diet do not matter even though doctors treating patients with MS know different. For example, doctors know it is difficult to cope with both obesity or malnutrition and MS. Diet matters.
Finally, there are individuals who are honest, loving and caring but who have such limited knowledge that their input is often not helpful. For example, one patient in a discussion group described symptoms that sounded like a heart attack but another person said these symptoms sound like MS and suggested that the person with the chest pain rest. The person with the chest pain should have been advised to see a doctor immediately.
It is important to remember that Internet discussions cannot replace face-to-face contact with others and real social support. If you feel lonely and socially isolated because of MS, call your MS society and ask for advice on how you can break out this loneliness. Or call a church and other group you trust and ask for help. Maybe a change in jobs or housing is needed so it is easier to maintain contacts with others and develop new friends.
Also, if you do feel lonely, promise yourself that you will do something to break out of isolation. Unfortunately, use of the Internet for more than a limited amount of time increases depression. This is the last thing you need when you are already coping with MS.
Remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Also remember that the articles you read on how great Internet discussions are have been carefully placed by businesses trying to make money. These businesses are not going to tell you about the many real problems involved in Internet-based discussions. These businesses are not going to tell you about the MS fakers, the hustlers, the alcoholics, the very obese, or all of the bad advice.
Again, remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Please remember to consult your doctors about how to stay as healthy as possible. Nothing here should be interpreted as medical advice. Instead, please use the information you find here in your discussions with your doctor.
Copyright 2008 Rebecca Hoover

This concludes the 28th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 12, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, February 9, 2009.

Thank you.
Comments for this post.


  1. Hi! Lisa
    As for researching on the web, sure you have to be careful to not go overboard, however going online and checking out blogs has been a tremendous help for me. Rather than escalate my concerns,it calmed them.

    I had no clue what MS was when they suspected I might have it. My first neuro was a jerk. The MS society was OK but they sugar coated everything. Reading websites and blogs,I could take my time,take it all in. Reading about the various symptoms I can at least be prepared for what might come, Bonus if it doesn't .

    It's also such a relief to not have to explain myself to other MS'ers .
    When I say I'm tired they know what I'm talking about and it's great to know the majority think "yeah Ms sucks"

  2. Hi Carole (I was just leaving at comment at your place, hehe)

    I AGREE!! Bloggers tell it like it is which is very helpful in getting grasp on the 'real' life of MSers.

    In one forum which I was thinking of in putting these posts together has an interesting phenomenon going on. There have been several folks who became VERY active on the forum (exclusively MS) thinking that they MUST have MS.

    Then when the testing was finally complete and it had been determined that they in deed did not have MS, they decided to stick around. So at what point does having non-MSers participating dilute the unique type of understanding and advice which only MSers can give to each other?

    Just something I ponder, but with the blogs there's much less ambiguity which I like.

  3. Carole and Lisa, I agree that it can be helpful when other discussion participants actually have had the same experience and know what one means. On the other hand, the fakers, who sometimes can really take over discussions, just drive me nuts--and I haven't been on a discussion board yet that did not have MS fakers. No amount of fake empathy does it for me.

    But, you can tell from my contribution here that, after participating in a few a these forums, I have a negative view of them. I decided to set up a yahoo group, with a limited membership, so I could avoid the fakers, the nuts and abusers that frequent these forums. Also, I found some research that showed that discusson groups are most effective when they are homogeneous (i.e., are limited to persons with just one disease). That research convinced me to just set up a group with others I know have MS and to include only nice people. Anyway, the use of yahoo groups is free,

    Lisa, I thought you did a great job of putting together a group of opinions here. I think it is very helpful to share information on experiences with MS discussion forums.

    I hope a lot of MSers read today's post. I think it will help a lot of folks understand they are not alone in having bad experiences with these discussion boards.

  4. Gee, I was quoted on the Carnival. I have arrived!!!(a little mirth there)

    Lisa, with regard to the MS bloggery, I take EVERYTHING with a grain of salt, and some things are more salty than others. I rate your blog "heart healthy," BTW.

    Since you're the researcher extraordinaire, how would you like to compile a list of MS fora for the rest of us who are too lazy to do it (ahem).
    In your free time, of course. :-)

  5. The only "forum" I like is Joan's biweekly chatroom. I stay off the other sites.

  6. Hey Lisa - thanks for the topic, it makes for some thought provoking reading.

    Maybe chatsites and blogs et al are the 21C equivalent of London's Speaker's Corner where arming oneself with a suitable size grain of salt (like Webster mentioned) was also always a good idea?

  7. I tend to stay a distance from 'forums' because I like the sound of my own narcissistic voice too much. LOL I know they are a helpful place for the right time for people...I just prefer to bury myself reading old blog posts of my favorite bloggers and continue to stay insulated in my own, little world...which is a quite lovely world, I might add...I DO come here after all.

    Linda D. in Seattle

  8. I browsed message boards a while back but I just got inundated with too much information. People's own opinions. Very subjective and a bit of an overload. I like to turn to credible websites--- MS Society's, Web MD, Mayo Clinic, CDC, and so on--- for straight facts and blogs for personal stories and experiences, but I think message boards and forums can mix the objective with the subjective WAY TOO MUCH. But that's just me..hehehe!