Avoiding Medical and Alternative Health Scams
Dodgy little blue pills and dubious anti-aging creams aren’t the only face of medical scams. There are predators aplenty willing to prey on people with health conditions, including Tourette syndrome. How can you avoid being their next victim? Know where to find reliable information about medications or procedures, and know how to recognize a scam.
Some General Rules
When you’re making choices, there are a few rules that can help to keep you safe. First, stick to practitioners who have real credentials. It’s easy to check whether someone has a medical license using your state medical board Web site (http://www.fsmb.org/directory_smb.html). If a doctor is licensed but has been disciplined for some reason, that information should also show up. Credentialed allied professionals such as licensed psychologists, social workers and other counselors may be researched in similar fashion.
Alternative healthcare providers can be harder to check up on. Check with your state to see whether they license practitioners—naturopaths and osteopaths are usually under the medical board, just like MDs, and acupuncturists and massage therapists are usually licensed as well.
Avoid any practitioner who recommends medications, herbal or homeopathic remedies, or nutritional products that they also sell. This is an obvious conflict of interest, but not unheard of. Would you trust a doctor who made extra money for every prescription she talked you into taking?
Whatever you try, keep good notes about dates, doses, and sessions. And before you start something new, decide what would mean “progress” or “success” for you: a reduction in severity of tics, perhaps—but only if it lasts longer than three months. To make sure you aren’t fooling yourself, take the time to count or rate your tic severity all day over a couple of days before starting a treatment. Then you have something to measure against after you’ve given a new drug or treatment a try. As you know, TS tends to wax and wane on its own, and the placebo effect is very real. If you expect something to work it probably will… for a little while.
Getting Reliable Information
Where profit is involved, some people will lie, and some of them lie convincingly well. They will cite studies that don’t actually say what they claim is true, or use meaningless but medical-sounding language. They may also tell you that further research would just take too much time, or that the whole medical establishment is against them!
Even if the treatment or drug is being evaluated by mainstream medicine, that isn’t proof that it’s actually worth trying, or safe. One or two small (e.g., with groups under 20) studies aren’t enough, nor are successful case studies of just a few people. Early evidence may be promising, but what if it goes wrong—and what if it’s you, or your child, that pays the price for trying it too soon?
Here’s where to find reliable information:
- Medline Plus (http://www.nlm.nih.gov/medlineplus/) is a public service of the National Library of Medicine. It includes a decent medical dictionary, drug and supplement information, and general health condition guidelines.
- PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) is a massive database of medical journal articles. Remember, not everything will have been peer-reviewed (checked by other doctors) before it was published, some articles will be speculative, and many will be about just one patient. The articles that are “gold standard” evidence are peer-reviewed studies involving many patients, where a comparison is made between new and existing treatments (or a placebo) without the patients knowing which they received.
- Tourette Association Medical & Treatment pages. The Tourette Association keeps up with all the latest advances and provides high-quality basic information as well.
- Particularly questionable practitioners and treatments may be featured on the Quackwatch ( http://www.quackwatch.org/) Web site!
What to Watch Out For
Just like used car salespeople, peddlers of dubious drugs, supplements and treatments have some favorite tricks. One is saying the treatment comes from some exotic place (Europe or the Far East, perhaps) and putting a huge price tag on it. Exotic, expensive… must be worth trying, right? Wrong.
If anyone tells you what they are selling will “cure” TS, they are lying. Likewise, if you’re told the drug or procedure is a secret, beware: in real medicine, claims must be tested by others who don’t have a financial interest in the drug or procedure, and the results should be published. If you had a cure for TS, or even just a promising treatment, would you keep it a secret? You really have to doubt the motivations of anyone who would…
Another trick is saying something is new and unique, unrelated to anything used before. Think about it—does that make sense in medicine? It’s true that breakthroughs do occur, but usually it’s because existing treatments are investigated until researchers find out how they work and then improved, or tried for different conditions. One medication was found to help reduce tic severity because a few people with tics took part in testing it for high blood pressure. No one ran out and prescribed it for people with TS right away, though, it had to be tested first. Success builds on success, it almost never comes out of nowhere.
Also beware of anyone who claims to have all the answers. Even famous specialist facilities like the Mayo Clinic, with hundreds of doctors and access to experimental treatments, don’t claim to be able to fix everything that ails you. Some supplement-makers claim their wares will fix not only your tics but everything from asthma to warts.
If you’re told to not talk to your primary care physician, or to stop using mainstream treatments, that’s also a bad sign. It’s as if someone has something to hide, isn’t it? It’s crucial to tell your doctor about anything you are trying. Your doctor may be able to prevent you from coming to harm, and he or she also needs to know in case the treatment is successful!
If there’s something new and effective, your doctor, and organizations like the Tourette Association, will want to make people aware of it. So don’t get pulled in by hype and sales pitches: investigate carefully, and choose wisely. Always check with your treating physician about any findings or questions you may have.