For those with MS, Internet discussion boards and chatrooms are usually a bad deal December 15, 2008Posted by Rebecca Hoover in Uncategorized.
Unfortunately, for those with MS, 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 as 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? Also, sadly, a lot of these fakers are psychologically sick and consistently recommend dubious treatments that involve considerable discomfort or pain for those with MS. One such faker recommends those with MS have all of their amalgam fillings removed, have chelation treatments viewed as unnecessary by doctors, undergo detoxing with enemas and other uncomfortable methods, and endure the hunger caused by fasting. 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. 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. If all of the miracle cures that have been sold actually worked, no one would still have MS.
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.
Last but not least, 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 sounded 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, scientific studies show 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. These businesses are also not going to tell you of the many individuals who participate frequently in online forums because they have such severe psychological problems that they have no friends in the real world.
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 let me know if you find my blog helpful. Please add a comment. What did you like? What would you like added? Thanks! Together we can change the way the world views MS. Please also join the Intelligent Guide to MS page on Facebook. I will use that page to make timely posts on new research and other issues likely to be of interest to others.
Please remember to consult with 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
Tags: Beat, MS, Multiple Sclerosis, Internet, Addiction, Depression, Bullies