Priced out: Some Long COVID and ME specialists charge high prices for concierge care, The Sick Times

[wingate]

Well, according to Dr Kaufman in their latest Unraveled podcast on YouTube they can get many of us to 80%+
Honestly, listening to this naively as a desperate ME/CFS sufferer, I‘m more than willing to go broke for the rest of my existence if they can get me back to living some sort of a life.

I am skeptical of this statistic that he’s getting people back to 80%+, and unfortunately, we can only take his word for it, because he and other doctors making these type of claims don’t have rigorous trials to indicate what’s happening one way or another to their patients.

I think for docs like Ruhoy to be charging $4,250 an hour, there should be some compelling evidence that what she offers is going to help the patient.

 

[Holinger]

It is a scam dressed up as evidence based medical treatment. Most ‘intergrative doctors’ push the regulatory boundaries the same way.

 

[Chandelier]

If they actually had some magic that worked, they’d surely run a successful stufy with the money they have.

Yeah, from what I gather, their magic pill is the „septad“. It’s a diagnostic process that’s explained in more detail in this post over at HealthRising.
They also did an entire episode about it on their Patreon, which they made freely available a few months back.
They are currently in the process of moving all their Patreon stuff to their YouTube channel.

 

[rvallee]

Unfortunately it seems like the solution to this feeling of failure is to generate a never-ending ambiguity machine where you can experience the positive feedback of a patient telling you that supplement #945 seems like it improves their bloating somewhat and they can walk away feeling like they did something good. These doctors realized that there’s nothing in the research to help their patients, and so they move over to the thousands of things that someone-once-said-might-help and spin theories based on poor understanding of the biology as to why it might work.

Yup. A lot of people seriously underestimate the main benefit of alternative medicine from the clinicians' perspective: it's like a slot machine that almost always makes you win a little. It's fake, but it's a constant stream of positive feedback. Exact same reason why psychobehavioral pseudoscience is so popular: they get the thrill of helping, requiring zero effort, and they can always fall back to the position that the treatment can't fail, only the patients can fail it. They can even keep trying again and again. Return business is the easiest business.

The toxic combination of psychosomatic ideology and corrupt evidence-based medicine is making this creep more and more into real medicine. Going to work every day and making little difference is terrible for morale. Going to work instead and feeling a little good about maybe helping every patient just a little seems to provide the same feeling of reward as actually making a real difference. This is probably why psychosomatic beliefs are especially strong in neurology. It's a discipline that deals with such horrible diseases with high disability burdens, and having this stream of patients being "healed" with fake treatments is too exciting to pass.

We're really seeing a world grow more into the idea of faking it until you make it, in a systemic way. The biopsychosocial model is perfect for this. It's completely fake but it always feels like it's working. So the clinicians get the same feel-good out of it, while remaining in real medicine, which makes them feel doubleplusgood because it isn't just helping everyone a little bit, it's science! Well, it's not, but that's the whole thing about biopsychosocial medicine: no actual science, but the feeling that it's fully scientifically valid.

Over time it's guaranteed that alternative medicine creeps closer to real medicine, just as real medicine is adopting alternative ideas. Frankly I'm surprised they haven't clued in on it, you could easily get the exact same kind of boasts out of homeopathy than out of CBT. As long as your homeopathic treatment includes a hefty dose of gushing about how effective it is, backed by systematic reviews and clinical trials. Although most likely it will simply be that "mind-body" garbage becomes the main approach in alternative practices, it's essentially custom-built for this purpose.

 

[Jonathan Edwards]

Honestly, listening to this naively as a desperate ME/CFS sufferer, I‘m more than willing to go broke for the rest of my existence if they can get me back to living some sort of a life.

I guess part of the idea of S4ME is to help people see that this really is rubbish - all made up stuff that sounds medical but is totally imaginary.

 

[Jonathan Edwards]

I’ve wondered the same thing, and what I eventually realized is that these doctors genuinely believe that they’re helping people.

I find that very hard to believe in the context of some of the names that have come up. What is it to 'genuinely believe' in this sort of situation? It certainly seems to be entirely compatible with finding a niche in the market where you can charge huge fees and not worry about too much competition from people who are actually smarter than you (the reason they go into these 'cinderella' markets).

I am sceptical about the idea that all this is deep in the psyche. Get these people into a chat at a dinner or in the bar and the cynicism tends to roll out pretty quickly. They are just very good at putting on the veneer for the clients.

 

[jnmaciuch]

I find that very hard to believe in the context of some of the names that have come up. What is it to 'genuinely believe' in this sort of situation? It certainly seems to be entirely compatible with finding a niche in the market where you can charge huge fees and not worry about too much competition from people who are actually smarter than you (the reason they go into these 'cinderella' markets).

I am sceptical about the idea that all this is deep in the psyche. Get these people into a chat at a dinner or in the bar and the cynicism tends to roll out pretty quickly. They are just very good at putting on the veneer for the clients.

I’m sure many of them are scammy cynics. I’m mostly thinking about a few examples I’ve met both as a patient and as a research assistant, some who actually ended up making less money when they switched to the alternative practice because the office was run so that they didn’t see most of the profit. It’s not the only reason, but it is one I believe drives a good number of these doctors at least at the beginning

 

[wigglethemouse]

As a counter point we should mention that seeing a specialist in the US without insurance is incredibly expensive. Even a recent GP appointment (in a large medical practice) with bandage wrap as treatment supplied was $1000+ before insurance discount, and after discount I was left to pay $225 co-pay after insurance had paid it's bit.

Lab tests are also expensive if not covered by insurance. Often insurance has a negotiated rate of 5-10% of invoice for lab tests. If not covered by insurance you pay 100% of invoiced cost. e.g. You have insurance but test not covered for the diagnosis code listed =>$250 vs $12.50 if it were covered. Oh, and diagnosis code coverage varies state by state for that test.

 

[Jonathan Edwards]

Even a recent GP appointment (in a large medical practice) with bandage wrap as treatment supplied was $1000+ before insurance discount, and after discount I was left to pay $225 co-pay after insurance had paid it's bit.

Yes, but that might have included a clinical assessment and an x-ray that usefully excluded something needing other treatment. For the clinics described in by the SIck Times we are talking about paying five times as much for an imaginary diagnosis.

I am intrigued by this because I had always thought US patients were more savvy about doctors and less likely than UK patients to meekly do what they are told and thank the nice therapist for being so helpful (and give a nice big score on the PROMS sheet). I thought US patients assumed that all doctors were potentially grifters and incompetents and called them out when they tried to fob them off. I certainly found US citizens much more questioning and hot on their rights.

Yet it seems that this sort of entirely bogus medicine flourishes in the US in a way it hardly does here.
I was amazed that there are even medical schools training people in 'Osteopathic Medicine'. I also get the impression that this is something that has evolved since the 1970s-1990s, when US medical education material was by far the most rigorous and US clinical research was productive. All that seemed to fade out, at least in rheumatology, by 2000.

 

[Hutan]

For the clinics described in by the SIck Times we are talking about paying five times as much for an imaginary diagnosis.

Oh, you'll probably get several imaginary diagnoses for that price.

 

[Jonathan Edwards]

BOGOOMF?

(Buy one, get one or more free)

 

[Braganca]

I am intrigued by this because I had always thought US patients were more savvy about doctors and less likely than UK patients to meekly do what they are told and thank the nice therapist for being so helpful (and give a nice big score on the PROMS sheet). I thought US patients assumed that all doctors were potentially grifters and incompetents and called them out when they tried to fob them off. I certainly found US citizens much more questioning and hot on their rights

US patients more have an expectation for “good customer service” and expect to have to pay for it. These doctors listen, spend time, and are nice. People take that as “they’re helping me” and this is “good service”.

Socially, we are being constantly conditioned and pushed in the direction of charlatans. Charlatans are the new normal in both healthy and sick culture.

I would say 98% of ME/CFS patient conversation in Facebook groups and on Twitter is discussing these theories / treatments / badly powered studies / experts like they are real and trustworthy medical solutions. It takes years as a patient to start to separate the fluff from what’s real. The only people who see through it all are here on this forum. 90% of what is being offered to people with ME is fluff. So the numbers go against us. Plus, you have your friends and family 90% of whom have signed on to wellness culture and positive thinking and action above inaction encouraging you to explore these routes.

The other social construct I’ve noticed ever since getting sick is if you join a FB group for a particular treatment, it turns cultish pretty quickly. You’re expected to conform to agreeing that this treatment works or get iced out in the group.

And, people now raise thousands for “treatments” — they’re down a path where they cannot admit to themselves or the people who contributed money that it didn’t work.

 

[Liie]

I was amazed that there are even medical schools training people in 'Osteopathic Medicine'.

Apparently in the USA the term "osteopathic medicine" refers to a tradition that has evolved and shed most of its pseudo-science origins and embraced normal evidence based medicine. Those medical schools give a proper MD degree. I don't know how much of the old pseudo-science that is left. A good part of the USA physicians have this degree.

"Osteopathy" on the other hand refers to the full kook alternative medicine pseudo-science. This is for example what our old friend Phil Parker studied.

 

[Jonathan Edwards]

I don't know how much of the old pseudo-science that is left. A good part of the USA physicians have this degree.

It seems bizarre. The only thing I can think of to explain it is that for some reason its introduction allowed people to train in 'medicine' on the cheap or with lower grades on exams. Maybe the osteopaths put up some endowment funding?

I strongly suspect that the label somehow allows doctors to be 'liberal' with their clinical decisions - 'holistic' perhaps. In other words to throw in as much pseudoscience as you like.

 

[Hoopoe]

I am intrigued by this because I had always thought US patients were more savvy about doctors and less likely than UK patients to meekly do what they are told and thank the nice therapist for being so helpful (and give a nice big score on the PROMS sheet).

My impression was that most medical fads and quack treatments are invented in the US and then spread to other countries. The unaffordable healthcare there makes people search for alternatives.

 

[Trish]

There are plenty of quacks in the UK too ripping off sick people with homeopathy, crystal healing, acupuncture and a host of other things. I guess the difference from the US is that most of them aren't doctors.

I think there is a growing problem of UK universities that don't have medical departments getting into vague fields they call things like 'health science' and giving postgrad degress to people like Phil Parker for terrible research into quack therapy. I know someone who did a Masters' degree at a UK university based on her practice as a homeopath.

 

[Kitty]

I think there is a growing problem of UK universities that don't have medical departments getting into vague fields they call things like 'health science'

Yup. Training people for the workplace, because that workplace actually exists.

Future social history teachers are going to need whole terms to cover this.

 

[rvallee]

Yet it seems that this sort of entirely bogus medicine flourishes in the US in a way it hardly does here.
I was amazed that there are even medical schools training people in 'Osteopathic Medicine'. I also get the impression that this is something that has evolved since the 1970s-1990s, when US medical education material was by far the most rigorous and US clinical research was productive. All that seemed to fade out, at least in rheumatology, by 2000.

I don't know about that. I'd say it's far worse in the UK, and in many other countries, because they straight up made the woowoo official. There is more of a free market thing going on in the US, but with consumers being able to shop around, it hasn't allowed for something like top-down alternative medicine being not just part of the system, but mandatory. With punishment for those who refuse it.

I see a lot in the LC community blame the for-profit US system for their failure to make progress with LC, but things are significantly worse in countries like the UK because the woowoo is imposed from the top-down, with no one having any choice or influence in the matter. Hell, they do it despite their entire models having been debunked, they straight up don't care. They can simply get away with it. I really don't see any way the biopsychosocial ideology is any better than any of the crop of other alternative medicines. It's all the same to me.

That's probably one of the reasons why things are somewhere in the middle for us in Canada. We don't have a national health care service. We have ten, it's a provincial authority. They don't coordinate in ways that allow for this kind of top-down "that's just the way it is, if you don't like it, fuck off". Not that things are much better, there's just nothing, but at least bogus medicine isn't a fanatical obsession like we see so commonly in Europe. Because it takes top-down imposition for something like this to become systemic. Like autocracy, it doesn't happen organically or through merit, it needs constant efforts, even violence, to maintain the peace.

 

[poetinsf]

* The highest concierge fees range from $5,000 to $8,500 monthly, with treatments billed separately. Despite physicians charging high rates, patients struggle to receive consistent care from providers or affordable referrals when priced out of a specialist’s practice.

Good cripes. People should stop seeing doctors once they are satisfied with their ME/CFS diagnosis. There is nothing they can do for you. They'll only can make you feel worse with BPS recommendations.

 

[Kitty]

There is nothing they can do for you

People don't want to accept this, though, and some people with ME/CFS are complicit in perpetuating the notion that they shouldn't accept it.

"There's always hope!"
"You haven't had all the tests yet!"
"Doctors are often wrong!"
"There has to be something!"

And private doctors are happy to oblige. God knows the NHS has caused us enough problems, but the better doctors are capable of the blunt truth.

"We don't have any treatments for it, I'm afraid."

I'd have liked a "yet" in there, but all the same it was preferable to fudging it.

ME/CFS is still what they call on the news a life-changing injury. The real problem, the one that no-one mentions whether they're good physicians or just in it for the grift, is that people aren't supported accordingly.