Internet Health Support Groups
Coping With "Problem Posters"
by M.E. Peychers, M.A.
Trying to make money dishonestly via the internet happens even within patient self-help groups.
Vendors and sales reps usually pose as ordinary members. A favourite trick is joining a board with a story about how a particular product cured them or a relative. People who challenge their claims might be called cynical and mean. Sales reps rarely admit to receiving commission on sales, but the links they post usually reveal their surnames, which is the giveaway.
"Wonder cures" often take off from message boards, with excited posts from people claiming to have been cured. For that reason, small start-up firms may "get the ball rolling" by paying people to pose as customers. To save money, some firms even do it all themselves.
- Testimonials sent to two health groups by a man whose girlfriend had been helped by a new skin cream were traced back to the firm's President.
- A man who posted what looked like an innocent enquiry about a supplement turned out to be the CEO of a firm manufacturing it.
Never believe anything claimed on the internet without very good cause. Be wary of ingredients kept secret "until the patent is granted," or if you aren't shown independent tests. (Tests paid for by the manufacturer are worthless.) It is never rude to ask for proof, as long as you do it politely.
With incurable diseases, desperate patients tend to be looked on as easy prey. Saying "I would pay anything for a cure" is almost inviting the sharks to come in and bite you. It is important to keep your guard up (Jarvis 1997).
"Resident Experts" may have mixed motives for joining a group. For all you know, they may be there mainly to benefit themselves.
A doctor who offers free online advice is a wonderful asset. He or she is most probably a generous and caring person, deserving nothing but praise. Yet it is also possible that the main aim is to boost someone's prestige or bank balance. One group's "resident expert"' received thousands of dollars a month to enhance the reputation of the medical specialist he kept praising. No one knew until a court case revealed their secret contract.
Patients are sometimes offered cheaper treatments in exchange for posting rave reports on the internet. Occasionally, non-patients have been paid to pose as clients, writing about treatments they never had. It is almost impossible to prove this, unless the fake patients are careless and get their stories muddled. At the same time, many a genuine patient who has recommended a wonderful doctor has left a group in embarrassment or anger after being accused of dishonesty.
Sometimes "'experts" give themselves away when serious gaps in their knowledge are revealed. A trained alternative therapist wrote a book about the treatment of a difficult skin condition after treating only one patient. When she joined a health board to promote sales and look for clients, a few questions were all it took to show that she knew almost nothing about the condition.
Wanna-be professionals may offer help, but be there mainly to exploit members. Their advice, and even their presence, could be harmful. Offering to answer questions on a public board is a simple, first step for people who want to work as semi-professionals but lack the qualifications. Examples of this may include people hoping to set themselves up as life coaches or as untrained counsellors. Looking for paying clients, and for publicity, they target health groups.
One common tactic is to keep trying to bring discussions round to their pet theories of the psychological or spiritual issues behind life crises or health problems. People rarely like being psychoanalysed, especially when it is done badly.
Another tactic is announcing that they are writing a book. The simplest way to do this is by harvesting details from other members' stories and pasting them together with a running commentary. The invasion of privacy is rarely appreciated, unless members are certain that the book will have real value to the community.
Challenging any of these people can seem like more trouble than it is worth. Unless offenders are blatant, it will be hard to prove deception. There may also be great reluctance to risk offending anyone seen as offering expert advice.
If you think your group is wrongly being used for business purposes, don't challenge anyone directly. Instead, report them to the board-owner or a moderator. The group's administrators will usually handle situations like this behind the scenes. If someone is told off or banned, you won't be held to blame. You won't get caught up in any public fights, or have any anger directed at you by other members.
Jarvis, W.T., (1997): How Quackery Harms Cancer Patients
U.S. Food & Drug Administration, (2005): How to Evaluate Health Information on the Internet
U.S. Federal Trade Commission (current): Operation Cure. All campaign
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