[Discussion] Medical Quackery

This is a follow up to the thread "Medical quackery in the US upsets me very, very much". The aim of this current thread is to take up the discussion on medical quackery (widening the scope since the US isn't the only country concerned), discuss news item pertaining to it and the potential responses to address it.
The definition of medical quackery is not up for debate and includes, among others, homeopathy, vaccine skepticism, naturopathy, crystal healing, psychic healing.

Thanks, all, for your comments.

We did go cold turkey on both Concerta and Prozac for her. It was during Xmas break so my wife and I were able to keep close tabs on her.

When she started Concerta and Prozac, about 2 years ago, we saw immediate benefits from the meds. Over time those benefits faded. She’s been off of them long enough now, and if anything we see improvement. Though very slight. But it’s a step in the right direction.

I’m just not excited about spending $70.00 US per month for a placebo. Next step is to get some bloodwork done and look at folate levels and well as other things.

Im curious about this topic: Stem Cell Clinics

They popped up over the last decade and there are apparently now hundreds in the US offering treatments with no proven benefits. Im struggling to come to terms with a reality in which these places can operate.

This came up because of this article. The DOJ is civilly suing 2 companies
https://arstechnica.com/science/2018... so great, the feds might properly penalize ~2 doctors while the industry continues to milk millions or more from people.

I found this blurb about what treatments may exist using stem cells right now

The list of diseases for which stem cell treatments have been shown to be beneficial is still very short. The best-defined and most extensively used stem cell treatment is hematopoietic (or blood) stem cell transplantation, for example, bone marrow transplantation, to treat certain blood and immune system disorders or to rebuild the blood system after treatments for some kinds of cancer.

Some bone, skin and corneal (eye) injuries and diseases can be treated by grafting or implanting tissues, and the healing process relies on stem cells within this implanted tissue. These procedures are widely accepted as safe and effective by the medical community. All other applications of stem cells are yet to be proven in clinical trials and should be considered highly experimental.

Beware of stem cell treatments offered without regulatory approval or outside the confines of a legitimate and registered clinical trial.

So that's like 3 things and they sound like they need to be performed in a hospital. Why is it legal to create a business centered around unproven treatments? This should be part of business and medical licensing. There are systems in place that should be protecting the public and are failing.

Why aren't there criminal proceedings against doctors harming patients?

I believe there actually are criminal proceedings against doctors harming patients this way. I’m 100% certain that the Order of Doctors in France would come down, hard, on doctors who are so unethical. We’re supposed to operate on the basis of current knowledge, current evidence based medicine. Which is not the case for stem cell therapy at this time.
I’m fairly certain there are a couple of class actions in the US, but I’m not entirely clear on everything that’s going on though, being a bit far removed.
I’ve seen one case here of a patient who had a retinal detachment, was treated here in France, but insisted on traveling to the States for stem cell therapy as a last ditch resort. This was against the advice of her surgeon (whom I know personally). So she went, and cane back with a filthy mess of a vitreous (the inside of the eyeball, in short). Like a dense, opaque mass of cells swimming around. It was unsalvageable. What a shame.

Sadly, in the U.S. quacks can hide behind certain key words like “supplement” for fringe medication therapies and “complementary” for fringe procedural therapies.

Right, usually they are very careful in the wording to not claim medical results, as that will bring the regulators down on them. Same way all the 'medical' massages, acupuncturists, homeopathy and supplement scams and so on get to operate.

So I'm on call this weekend and am seeing a case of quackery gone very wrong. Very healthy gentleman with history of a medical condition went to a clinic of some sort and was given high dose IV vitamin nonsense along with chelation. Not sure where they get it (I assume a compound pharmacy) but within 12 hours he developed diffuse pain and fever. Came to our hospital and now is gravely I’ll with organ failure. It looks very grim.

Will be reporting this one to the department of health who I expect to do nothing. Not even going to bother with the medical board (the person who gave the treatment is an MD), they wouldn't even return my call last time I tried to report something like this. I'd love to notify the media but I can't because of HIPAA.

Docjoe wrote:

Will be reporting this one to the department of health who I expect to do nothing. Not even going to bother with the medical board (the person who gave the treatment is an MD), they wouldn't even return my call last time I tried to report something like this. I'd love to notify the media but I can't because of HIPAA.

If it isn't already on your list of places to try to report it to, I would contact the State Board of Pharmacy as well. They might be very interested in what you have to say.

Docjoe wrote:

I'd love to notify the media but I can't because of HIPAA.

HIPAA doesn't apply to his next of kin, right? You could always suggest to them that contacting the media might be the only way to prevent this "clinic" from doing the same thing to other people.

Or the big push for "right to try" bullsh*t. Bleeding desperate people dry on "treatments" that are expensive, and not going to work.

that is crazy, and I cannot image how wildly frustrating and heartbreaking that is, for you, for him, for his family.

It is pretty sad the regulators are not even responding to complaints.

Due to HIPPA you cannot tell that story but you can alert the news to the practice of these clinics and point to any high profile stories and let next of kin know you're passing along other high profile information to the news if they'd like to join.

I know some MD was trying to sell an old health plan I worked for on covering this as a benefit. Was billed as a cure all. Seemed like snake juice to me.

a maxim that has always been and continues to be true: "Cure-alls cure nothing"

Keldar wrote:
Docjoe wrote:

Will be reporting this one to the department of health who I expect to do nothing. Not even going to bother with the medical board (the person who gave the treatment is an MD), they wouldn't even return my call last time I tried to report something like this. I'd love to notify the media but I can't because of HIPAA.

If it isn't already on your list of places to try to report it to, I would contact the State Board of Pharmacy as well. They might be very interested in what you have to say.

Would you be able to relate details of the story to an acquaintance? Like some well meaning folks from an online forum that you’ve participated in for years? And then maybe those folks might give some of the details to a media entity?

And what if one of those folks was another MD who practiced medicine in another country, like maybe France?

Would that still be a violation of HIPPA?

If this person loses their life from the actions of a quack, it would be a real shame if the story just faded into obscurity. Even if they get the organ transplant and survive, this is the type of story that needs to have a very bright light shined upon it.

From my understanding (am a lab tech so HIPAA is also important to my job) he is already running dangerous close to the line just posting here. There's no personally identifiable details, but even "a guy with these symptoms and this history" is a grey area since it is talking about a particular person and not a hypothetical and a De-IDd sample.

I'm not saying the story doesn't need to get out, i just woulkdn't want to risk a valued community member damaging their job/reputation to do it.

thrawn82 wrote:

From my understanding (am a lab tech so HIPAA is also important to my job) he is already running dangerous close to the line just posting here. There's no personally identifiable details, but even "a guy with these symptoms and this history" is a grey area since it is talking about a particular person and not a hypothetical and a De-IDd sample.

I'm not saying the story doesn't need to get out, i just woulkdn't want to risk a valued community member damaging their job/reputation to do it.

You’re right. Actually I went back to my original post to remove details.

Will post further thoughts later when I have time.

thrawn82 wrote:

There's no personally identifiable details, but even "a guy with these symptoms and this history" is a grey area since it is talking about a particular person and not a hypothetical and a De-IDd sample.

Yeah, my wife works in IT for a company that does medical stuff (Best Doctors) and when salespeople or others ask for reports that break things down in certain ways she'll point out "If you did an 'anonymous' query of our employee database by office you would know which entry is mine because I'm the only person who works (from home) in NC." Depending on your audience it can be easy to break that kind of stuff if you're not careful.

Effectively anonymizing data like this is a difficult manual process. You basically have to take the data and ensure that there's no way it's categorized that puts more than some minimum number of people into any one bucket (say, 100 people, although optimally more). When you have geographic ranges as one dimension, you can sometimes just increase the size of the ranges until each one has the minimum number of people. If there's just no way to include a dimension (like "works from home") without going under that minimum, you can't include it. And you probably need trained statisticians working on things to sort out whether any information that shouldn't be included can be derived from what's provided.

It's one reason I'm always skeptical about any effort to provide bulk anonymized medical data for whatever purpose. The people who should be responsible for making the decisions about what's available rarely want to spend the resources they need. The people who want such data rarely understand the privacy issues at play, or just how vague the data they're allowed to have will be.

Whee.

OK, veering away from HIPAA and back to quackery........

I think it is largely incumbent on the patient to report this kind of stuff. I think it usually comes off as the unenlightened "western medicine" doctor trying to shut down the alternative medicine practitioner if I do it. And in my experience, it is very rare that the patient pursues anything when they have a bad outcome because they are too emotionally invested in the alternative treatment. This case is different as it is a potential public health issue so hopefully something comes of it, at least an investigation of what the patient actually received (since it had to be compounded somewhere).

I had a case a while back of a patient undergoing "thermography" which is advertised as a safe alternative to mammography and advertised on their website as being more effective. The FDA actually submitted a warning last year that there is no data to support it's use as a replacement for mammograms. She had a palpable mass in her breast which was continuing to get larger over a 2 year period. She had 3 of these tests and was told that there was no sign of cancer. Never had an actual exam. Finally, she went to a breast center when it was starting to eat through her skin and by then the cancer had of course widely metastasized.

I tried calling the medical board to report this place but they would never return my call. The patient made the comment that the test didn't seem to be as good as advertised but wasn't too upset by it. I'm guessing if she had complained to the medical board, there would have been some sort of follow-up.

Mammograms are not perfect either which is why palpable lesions need to be biopsied even if the image is negative. I'm sure this would have been a lawsuit (with a large settlement) if it had occurred in a traditional breast center.

Docjoe wrote:

Not even going to bother with the medical board (the person who gave the treatment is an MD), they wouldn't even return my call last time I tried to report something like this.

I'd do it again, anyway. Obviously it takes 0.001% of the effort for me to make this suggestion than to enact it, but whoever picks up the report may be a different person and you might get a different result.

I just wanted to share a recent personal experience. One of my best friends, who I've mentioned in this thread before, just had a medical quackery explosion. She's always been into alternative treatments going so far as to spend thousands of dollars to become a certified instructor in a meditation technique that causes your energy to vibrate (it actually just makes you hyperventilate but whatever). Recently she's been having some major nerve pain in her neck that's been giving her migraines. From what she's told me here's what she's tried and the results. Wet & dry cupping, didn't help. Accupuncture, helped for 2 days. Dry needling in her ear (no idea what this even is) didn't help. Massage therapy with energy field manipulation, felt better for a couple hours. She was now a couple weeks into this non-stop pain and was afraid she might have to go to the ER because she was starting to lose vision in one eye. Eventually went to a regular MD, they prescribed a strong anti seizure medication and she's been pain free for a couple weeks now. The doctor told her to come back in a month and they would take another look and see if the problem's gone. She couldn't recall what the doctor had said her diagnosis was but she already didn't trust them and said her own research had shown that the anti seizure meds they'd given her, which were fixing the problem, usually resulted in people having to increases dosages and years from now they'd no longer work so she was already off looking for other treatment options. I reminded her that her doctor had stated this was only temporary and could resolve the problem without need for taking it longer. Too late though, she'd already decided this was just poisoning her body and that her doctor was trying to make her dependent on a prescription.
For a second opinion, she called her massage therapist for advice because she said "he's a wonderful spiritual healer!" and requested options for "chinese herbal remedies", changes to her diet, any other accupuncturists or healers he might know. I mean, I get wanting to be healthy, that's only normal. But to turn your back on literally the only thing that has helped you while continuing to chase after "ancient wisdom" and alternative medicine just blows my mind. She's always done one or two alternative things in addition to regular treatment for any issues she's having but for some reason this time she's just going all in on allll the alternative treatments with no seeming rhyme or reason. She's spent several thousand over the last month trying all these different options. Heck she was even going on about how she probably needed to up her fish oil intake. I pointed out a recent article that talked about how it was found to be of no benefit and was actually environmentally harmful but she disregarded that because she's "seen the benefits" firsthand of taking fish oil.

Anyway, I just needed to vent. I hate seeing someone taken in so wholly by quackery. The biggest issue seems to be actual medicine will say "this will hopefully work but there's a chance it won't, we just have to try and see how your body reacts." whereas quacks will say "this will fix you! no question!". Couple that along with buying into the lie that all medical doctors want to keep their patients sick to make money off treating them, and suddenly the confident charlatan seems to be your best bet and if the dry needle in your ear doesn't fix your migraines then it's probably because you ate something unhealthy afterwards or maybe your negative emotions prevented the healing from happening. There's always an excuse for a "healer" but if an MD doesn't fix you first try or recommend surgery then it's a scam.

It's weird they'd think that we want to keep patients sick. As if there weren't enough sick people in the world? There's more than enough to go around. Way more than enough. Heck, lots of public hospitals have surgeries and treatments backed up for months, even years! If you've got a backlog that high, how does it help you to NOT try to cure people?

I mean, a significant number of doctors work on an hourly basis. All company and government workers I know do, and it's not like our medicine isn't standard. We get paid whether or not we see anyone! It would be much to our benefit to keep everyone as healthy as humanly possible so we can just go on the internet and post on message boards!

Why is it convincing to say that doctors want to keep people sick? Is it because they'd do that very thing in our shoes?

Why? Because doctors are smart and "elite" so they're frequently targets of anti-intellectual conspiracy theorists that want to let people in on the secret truth "they" don't want you to know.

LarryC wrote:

Why is it convincing to say that doctors want to keep people sick? Is it because they'd do that very thing in our shoes?

Because, at least here in the US, it's hard to tell if a doctor is prescribing you a particular drug because they've done all the research and determined if it's the most efficacious for your condition or because the attractive pharmaceutical sales rep bought your doctor a couple of steak dinners or sent them to a "medical conference" at a four star luxury resort.

Last year the Journal of the American Medical Association published a study that found that doctors who received at least one free meal--worth $20 or less--from a pharma rep prescribed that drug more frequently than doctors who didn't receive free meals. Doctors who got four or more free meals from a pharma rep prescribed that drug upwards of five times more frequently.

That study just says doctors prescribe branded treatment medications presumably against similar nonbranded medications. It doesn't say that treatment patterns were affected. That would ring up against insurance company Clinical Pathway protocols, so I don't know how likely that would be. You'd need to write up something like that in triplicate if you were deviating.

LarryC wrote:

That study just says doctors prescribe branded treatment medications presumably against similar nonbranded medications. It doesn't say that treatment patterns were affected. That would ring up against insurance company Clinical Pathway protocols, so I don't know how likely that would be. You'd need to write up something like that in triplicate if you were deviating.

To a layperson that study says that doctors can be very easily manipulated by the sales and marketing efforts of pharma companies.

If you are a medical woo person the odds are exceptionally high that you already intensely distrust the pharma industry, either believing that drug companies would rather sell a lifetime of expensive medicines that merely treat diseases instead of developing an actual cure or that said medicines are less effective than more natural remedies (or perhaps even poisonous).

So it's a quick hop and skip from "drug companies want to keep people sick" to "doctors who are easily influenced by drug companies want to keep people sick, especially because they also financially benefit from repeated treatments vs. actually curing a medical condition."

I'm not a medical woo person, but even I understand that a great deal of drugs aren't prescribed because they're needed or because they are the most effective form of treatment. They're prescribed because drug companies actively market them to doctors and consumers.

The leap from distrusting doctors to implicitly trusting random wackos on the street is where I fail to understand the logic behind any of this.

JeremyK wrote:

The leap from distrusting doctors to implicitly trusting random wackos on the street is where I fail to understand the logic behind any of this.

Indeed - any rationale for distrusting doctors applies tenfold to quacks.

Its why logic and rationale are not useful tools in these cases.

The wackos don't trust doctors either, so they present themselves as being "on your side" which makes people more willing to listen to them.