Why Giving or Taking Medical Advice on Discussion Forums is Unwise.

[MineralMan]

On any Internet forum where there is a Health section, it's very common for people to ask for, receive, or post medical advice. It's usually done to try to help someone or to report on something that is a health concern from whomever posts. Most non-medical forums, however, don't allow such advice to be asked for or given. DU doesn't allow it, either. There's a good reason for that:

People with health concerns usually know their own symptoms. They're often worried and come to a familiar place to ask about those symptoms. Someone with similar symptoms might offer some sort of advice, perhaps some over-the-counter thing they took that made them feel better. Or, they may stumble on a thread that seems to be about their concern.

The problem is that a set of symptoms can fit a wide range of medical problems. For example, lower GI distress is a common issue for many people. The same symptoms, however, can be caused by a wide range of conditions, from benign and easily-corrected, to life-threatening and potentially deadly. Because of that, giving or taking advice regarding lower GI symptoms can easily lead to not getting a proper diagnosis from a medical professional. That could prove deadly, through failure to find out about something until it is too late to be taken care of. The same is true for many, many health issues.

Usually, a typical discussion forum won't have many medical professionals as members. If it does, the first thing any of them will do when they encounter a thread asking for advice is to recommend seeking medical attention from a professional in the field. They know that attempting to diagnose problems from internet posts is not only unwise, but represents a form of malpractice. Most advice offered on discussion forums is given by amateurs, not medical professionals. Either they had symptoms that were similar, know someone who did, or read something somewhere about something similar. Sometimes, the advice is based on faulty knowledge, poor memory, or on something else altogether. In all cases, however, it is given without knowledge of the actual condition that is causing the symptoms for any individual.

So, here's my advice: Don't take any medical advice from random Internet discussion forums. Don't give such advice, no matter how good your motives may be. The only medical advice that makes any sense on a non-medical discussion forum is the advice to seek professional advice from a healthcare professional. Any other advice could be worthless or even dangerous.

[ProgressiveProfessor]

1. There are some basics that are of value

- Go to real health professionals
- Avoid quacks
- Homeopathy is a fraud
- Anti Vaxers are nuts

[MineralMan]

2. I certainly support your first one.

I support the others, too, but all that is needed is the first one. It will protect you from the others.

[Kennah]

3. I would have to somewhat disagree

I partake in a discussion forum that's health specific, and the one forum that interests and concerns me most is UC. I mostly listen because my UC is pretty well controlled with meds, and my dosage is pretty low.

There are a lot of folks who don't have success with certain meds, and they are searching for something else. There is lots to choose from, and sometimes talking with others let's one learn, "Heh, I was on X, having symptoms Y, but I switched to Z and now all is better." That kind of discussion is valuable to gather information, and I often find folks who have links to published info about studies and results. Armed with that kind of information, sitting down and talking with one's doctor then one is able to more intelligently talk about the subject and set about choosing a better course.

Some of the prime contributions I make are regarding how to go about safely getting meds from Canada, and it shocks and stuns me how many people are just sliding by, suffering, because they can't afford their meds since they don't have insurance, or insurance decides, "Na, we don't cover that. Die you fuck."

There are also diet specific issues that affect a lot of people's UC, and OTC meds like Metamucil and Citrucel can work wonders when one's bowels are flaring.

[MineralMan]

5. That's a very different situation than the Health forum on DU.

[laconicsax]

4. Recommend!

[Lionessa]

6. Better to suggest not taking advise without referencing it with a medical site.

About a year ago, my right shoulder started really hurting. After about a month of no medical results and surgery being threatened, I went on-line. After much searching and adjusting of terms, I found lay-person offering a warning about elder women with shoulder stiffness and pain.

She said, beware, if it is Shoulder Impingement Syndrome, you'll pay a lot to find out nothing but time works. That lead me to both the Mayo Clinic and various other legitimate sites with a term in hand. Having gone before, I was regularly searched to "Bursitis," which this was not, I had bursitis before and this wasn't at all the same. Anyway, upon double checking this specific term at a reasonable number of medical sites, turns out all agreed that likely (98%) I had this syndrome. And on my own I could try anti-inflammatories, but if they worked it wasn't SIS...I had tried and it hadn't worked. I could try gentle stretching, but that was really more just to make one feel like one was doing something... and most importantly, surgery was in NO WAY the answer, regardless of being told that it was the next logical step by my caregiver.

This information saved me surgery, money, and in due time the shoulder went back to normal. BTW, six months into the right shoulder impinging, the left shoulder also impinged. Since the data I had found warned me of this possibility, I didn't panic. Also it says it's a once in a lifetime (per shoulder) thing, generally in mature women, and I paraphrase something to the effect of, "your doctor may recommend many things from medication to physical therapy, but there is no proven effective solution except time. The condition can last in varying degrees from 6 months to 3 years." Just imagine how much I would have wasted and danger I'd have put myself into if I'd had firm dedication to the osteos who, I have no doubt, are really pissed they didn't profit off of either of my shoulders.

[unblock]

7. thanks for the medical advice!

all snark aside, while i agree with the cautionary tone, i disagree as to the blanket nature of the advice.

seeking advice from qualified medical professionals who are in a position to help figure out exactly what ails you and exactly what might best suit your situation is certainly good and very important advice. this should be the first piece of advice and second should be a fairly distant second.

however, i don't think it's a good idea to dismiss the value of suggestions from non-medical internet boards any more or less than it's a good idea to dismiss the value of suggestions from non-medical friends and family. it should be taken as advice from NON-MEDICAL people, to be sure, and should not carry as much weight as advice from qualified medical professionals, but it should not be dismissed out of hand.


for one thing, medical professionals these days can cost a lot of money and precious time off work, and many of them keep their office visits very short, too short to fully investigate your circumstances. consequently, they often misdiagnose as well. that's why it's important to know what symptoms and experiences and other medicines or supplements or foods in your diet, or allergies, sensitivities, etc., to be sure to inform your medical professional about.

for another things, medical professionals are essentially bribed to push certain drugs, and may not be as eager or even aware of certain alternatives. it's important to ask about a certain medicine if you think it might be right for you. listen to your doctor's advice, of course, but don't leave it undiscussed if there's a reason you think some other treatment might be more appropriate or at least worth investigating.

finally, some doctors are just plain committing malpractice, and how are you to know? just wait until you die and let your family sue? no, it's a good idea to discuss with other patients and other who have experience so you know what to expect, what is normal side-effects, what is a get-to-the-emergency-room-now side effect, and when your treatment is going off the rails. again, calling you doctor is always good advice, but knowing when to stop listening to your doctor is a potentially life-saving skill as well.





the bottom line is that the best patient is an INFORMED patient. value most the advice from those best trained, and also those in the best position to fully understand your unique situation, but don't ignore other advice; just take it for what it's worth -- unqualified and non-specific advice. maybe not worth much, but not worth nothing, either.

[MineralMan]

8. And a MISINFORMED patient is the worst sort of patient.

There are ample amounts of misinformation, I'm afraid, on discussion forums. How do you tell the difference between information and misinformation? That's why it's to consult experts, not amateurs.

[unblock]

10. please re-read my post.

the advice to rely totally on vendors of health-related tests, diagnoses, treatments and procedures and to completely dismiss any and all advice regarding same from your fellow consumers is facile.

yes, i agree completely that it's risky to rely on internet diagnoses and an expert has a better shot at determining the actual problem. but to take your advice at face value means running to the doctor every time you sneeze or feel the slightest twinge or ache.

i get about 250 migraines a year. any one of them is symptomatically indistinguishable from a brain hemorrhage or tumor, but it's obviously not reasonable for me to go to the e.r. for a cat scan that frequently. as a practical matter, i have no choice but to self-diagnose, at least until an unfamiliar symptom comes along.

other peoples' experiences and opinions and information, even if taken with a large grain of salt, can put you on the right path. if hearing about a new medication online gets you to go to the doctor, that's great, even if the doctor ends up prescribing something else or nothing at all. if the online suggestion is that a doctor's visit would be a waste of time, you should err on the side of ignoring that advice just to be on the safe side -- to the extent that you can afford it and that you're not just feeding a medical paranoia or hypochondria. and if online advice suggests that your doctor is a quack or ripping you off, that would be the time for a second opinion and careful consideration of your treatment.

[MineralMan]

15. Migraine headaches like yours are a chronic condition, and you

recognize them. I'm sure you've seen a doctor for them. So, if they don't change, the treatment for them is pretty much set. Unless the symptoms change dramatically, you know that you still have migraine headaches, not a brain tumor or a stroke. So, you take your medication, as prescribed. I suffer from cluster headaches, and know their symptoms all too well. I know what is needed when they pop up again after a period without them, and so does my doctor. He writes the necessary prescriptions after a brief visit.

That's not what I'm talking about at all in this post.

[BuddhaGirl]

9. +1

:thumbsup:

[astral]

11. Medical Advice is something that should not be given by non-medical professionals, I agree.

I frequent many sources of health information online, often looking at symptoms and solutions to problems that aren't mine, but are common among people I know my age. Maybe I can say, "I heard this can help," and they can look into it themselves, or not.

I have had some serious medical problems recently that I seem to have recovered from without the aid of a physician. The medical profession shrugged their shoulders, saying there is no cause and there is no cure, we can only help with symptoms. They even refused a diagnosis of the suspected source of my illness so I had to fumble around trying to find 'cures' myself.

Out of the many things I learned and tried, I am not certain to what extent which items helped me, and to what extent time alone helped me recover.

I believe talking about it can help other people help themselves, so long as I put it,
"This is what happened to me."
"This is what I did."
"This is how my health has changed."

... and over what period of time it took. I have no claim to have the cure or answer to anyone's health condition, but I know someone who has symptoms similar to what mine were, who is getting told by the doctors, "there is no cause, there is no cure, you will have this for the rest of your life."

I share my experiences and wonder if the things I did for myself can help this person if they try to do some of the same things too.

I know it's easy to be perceived as having crossed that line and given 'medical advice,' but when what you are advising isn't 'medical,' when doctors are not offering a solution, and the things can not cause harm to the person who may try them, is that bad?

[BadgerKid]

12. What I look for in online forums

is the information that will help me narrow my search for rational, scientific understanding of either the condition, cure , or both. I consider myself skeptical enough not to buy into hype.

I had a crappy MD misdiagnose my shingles by 12 hours, but his arrogance and self-assuredness kept me from going back after I had the full blown breakout. And I don't know the circumstances, but years later he was no longer working there.

[CanSocDem]

13. Your "healthcare professionals"....

...are in business to make a profit, not encourage public health.

These forums serve the 'public interest' by opening up the discussion to a variety of public health options. That sounds consistent with the goals of DU.

.

[uppityperson]

18. So if my doctor makes a profit, can pay his bills, this means he's not encouraging public health?

seriously? No health care professional can make a profit AND encourage public health?

My Nurse Practitioner I see only serves the public health if she doesn't get paid for it? My massage therapist? My dentist? My acupuncturist? None of these can encourage public health if they also make a profit?

What?

[CanSocDem]

20. If your coterie of health professionals...

...were given the choice of treating you (for a profit), or working for peanuts in a free clinic somewhere, what would they do?

Would you attend a "free clinic" for your treatments? Probably not, because, in the bizarro world of free market medicine the consumer equates quality service with high prices.

"High prices" for 'quality' service limits public access. Just keeping YOU alive isn't serving the public interest unless you devote your life to increasing the publics' access to your medical team. That would mean the end of high-priced medical attention and you would have to share your 'team' with every Tom, Dick and Harry that walked in the door.

How would you feel if your money didn't move you to the front of the line...???

.

[uppityperson]

21. You mean given the choice between being able to buy food, pay bills, or be homeless in poverty?

Yes, my health care providers (and me being one), most of us have chosen to make more money than what it costs to do business.

You may look down upon me for only volunteering at a free clinic once a month, for only volunteering a couple hours a week in the past at our local Family Planning clinic, but unless I make enough to pay my business costs (license fees, continuing ed, insurance, rent, utilities, equipment) AND make enough to buy food, pay my housing costs, buy gas, then I won't be able to do that for long.

My money has never moved me to the front of any line. And sure, I've not only worked at but attended those "free clinics" for treatment.

Yeah, the doc I worked for, the FP clinic I ran, my own practice, all low cost, all eating much in uncollected money, all charging less than most everyone one around BECAUSE we try to increase access. I can't say the same for all my current crop of providers I use, but none of them are getting rich off being providers. Even the docs. None of the ones I know. And I have no problem letting them earn more than peanuts, make some profit, since what I see them making isn't that much.

I do not think health care providers making a profit is the problem of increasing health care costs. Look to insurance, both for providers and patients. Look to what happened to family farms, being bought out by big "health care corporations" who then demand more more more and giving less less less from their providers with less less less while costing more more more to us.

Maybe things are different where you are.

[uppityperson]

19. Do you mean people who post here and make money off suppliments?

Or no, they make a profit so, according to your opinion, they aren't encouraging public health. Do vitamin manufacturers, suppliment makers not in the business to make a profit?

[MH1]

14. I agree with your main point but I think there are exceptions.

Here's an easy example: if someone has great difficulty falling asleep, or they wake up and can't get back to sleep, then they may need to see their doctor about medical causes for that. But there are some tried-and-true techniques that are benign, that the person might not have thought of, such as making the room completely dark, and/or getting one of those eye masks that people use on airplanes; trying a white-noise technique; reading light fiction or something deadly dull before bed rather than, say, a political forum ;) . On the other hand, I wouldn't include suggestions to take certain supplements as something benign, because there might be side effects for some people.

I also concur with some of the objections voiced by others here, mainly that our 'medical health' establishment in this country is unfortunately primarily about profit. Sure if someone's found a competent doctor that's not as big a concern. But what if someone hasn't found a doctor they trust yet? No one should take anything they read anywhere on the internet as ready-to-use medical advice, but it can be helpful to point in the right direction and ask the right questions of the medical professionals you finally end up with.

It's kind of like wikipedia: don't quote it directly, but use it as a set of pointers to valid information.

Of course the common thread is that the information consumer needs to know how to discern credible from non-credible sources.

[hedgehog]

16. What I use the Health forum for is the same as talking to people in real life-

for example - I came across a reference to Vitamin D and SAD a few years back. I looked around and found out that there was a lot of research going on because Vitamin D is involved in so many functions. What I did with the information was to talk to my doctor and to suggest (OK, insist) that my family members do so as well.

People complain about pharmaceutical ads, but it was only when the ads went on the air that hundreds of people went to their doctors to talk about restless leg syndrome. Others scoff and insist there is no such thing, but hundreds of people put up with a chronic condition until they were made aware that there was a treatment. Don't criticize them until you yourself have been awakened several times a night, night after night!

So, if a Health forum makes people aware that there are treatments or that they should go see a doctor, it's worthwhile. Many people are reluctant to bother a doctor with that annoying little problem, and put off treatment until a small problem becomes serious.

[MineralMan]

17. And that's how the forum should be used, I think.

Factual health information is very worthwhile. Sales oriented information is rarely worthwhile. There's so much good health information out there, that it's a shame it's diluted by those who seek primarily to part people with their money when they're suffering. On all sides.