http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=222x110664Oh my.
You know, MineralMan attracted my interest some time ago when he made a violently anti-osteopathic medicine screed on Skins's island. I had, and still have, no opinion, either way, about osteopathic medicine, but it struck me how passionate, how rabidly vehement, MineralMan was about the topic.
Anyway.
MineralMan (1000+ posts) Sat Oct-15-11 01:44 PM
Original message
Why Giving or Taking Medical Advice on Discussion Forums is Unwise.
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.
Good advice, but primitives aren't exactly famous for taking good advice.
ProgressiveProfessor (1000+ posts) Sat Oct-15-11 01:53 PM
Response to Original message
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 (1000+ posts) Sat Oct-15-11 01:55 PM
Response to Reply #1
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 (1000+ posts) Sat Oct-15-11 02:19 PM
Response to Original message
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 ****."
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.
Okay, damn it, the primitive's being secretive here, when there's no reason to be secretive.
What the Hell is "UC"?
I'm guessing "uncontrolled colon," but I'm probably wrong.
MineralMan (1000+ posts) Sat Oct-15-11 04:27 PM
Response to Reply #3
5. That's a very different situation than the Health forum on DU.
Lionessa (535 posts) Sat Oct-15-11 04:38 PM
Response to Original message
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 (1000+ posts) Sat Oct-15-11 04:43 PM
Response to Original message
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 (1000+ posts) Sat Oct-15-11 08:08 PM
Response to Reply #7
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 (1000+ posts) Sat Oct-15-11 11:53 PM
Response to Reply #8
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.
astral (1000+ posts) Sun Oct-16-11 03:29 AM
Response to Original message
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 (1000+ posts) Sun Oct-16-11 10:15 AM
Response to Original message
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 (996 posts) Sun Oct-16-11 10:47 AM
Response to Original message
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.
MH1 (1000+ posts) Sun Oct-16-11 11:09 AM
Response to Original message
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.
I agree with MineralMan, but am troubled by something.
Sometimes one simply isn't given medical information by a medical professional, no matter how much one asks, persists, nags, and cajoles. I dunno why medical professionals treat certain information as if privileged state secrets, but they do.
One time, I wanted to know how low my blood pressure had to go, before I should panic.
Over a period of five months, I inquired of four medical professionals, all of whom were, or are, intimately acquainted with my blood pressure.
They all refused to answer the question, hinting it was "irrelevant."
I dunno why they said that, but that's what they said.
I finally consulted the internet, to find out how low is too low; when one should panic.
On the internet I found out it was 50/33--later verified as accurate by a fifth medical professional--and as I was usually 80s/40s, I recovered my usual mellow serenity and peace of mind.
It drives me nuts, when certain medical professionals treat harmless information as privileged secrets to be known only by their own kind.
