• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

why the hell do chronic fatigue specialists charge so much?

Messages
40
I'm disturbed by the coupling of $$ and medicine. surely very disabled people are going to also be the least likely to pay for their treatment?

someone is going to say, "because they can", but before you say that, I'm just going to mention, "I know", and also: "that doesn't make it right".
 

manna

Senior Member
Messages
392
have you asked for a low income concession? might be worth a try. i don't actually think there are any me/cfs "specialists". to me, specialist would imply regular total cures. i suppose it also depends on why you're going to see them; whether that be for less symptons/improvement or to recover. recovery is surely worth breaking the bank for but that doesn't seem to happen. should be a part refund if you don't fully recover because, really, thats the carrot that got you there. anything less is, more than likely, a waste of money as me/cfs folk quickly retox. should be two tier, one price if they get you home and another if they don't.

i did go to see one, though he specialised in cancer as well, and he was good and let me pay £20 instead £120. at the right time, the merthods he used could have done it too, i think.

generally though, expensive wee.
 

Aerose91

Senior Member
Messages
1,400
I guess if you look at it they charge about the same as regular specialists just without the insurance. The medical industry will never be primarily based on helping people, it's money first. There's a reason why rich people don't get or stay as sick as us.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
It's not just CFS specialists. I just went to a dentist who looked at me as a cash cow. My teeth aren't even that bad and if I did all he said I should do it'd be about $10K. He attitude was as long as I could finance it then what is the problem? I immediately found another dentist.

I pay $125 for 1/2 hour with my naturopath.
 

Butydoc

Senior Member
Messages
790
I'm disturbed by the coupling of $$ and medicine. surely very disabled people are going to also be the least likely to pay for their treatment?

someone is going to say, "because they can", but before you say that, I'm just going to mention, "I know", and also: "that doesn't make it right".
Hi Ricericerice,

What do you consider a fair charge for a specialist? I know I had been in private practice for almost 30 years as a specialist. My overhead was 60 percent of my collections. I paid 36,000 dollars a year for malpractice insurance even though I never had a claim against me. My training required 4 years of college, 4 years of medical school and 8 years of surgical residency. I was 33 years old before I could start to earn a living. When I finished, I was saddled with considerable debt from student loans.

Maybe a better question would be how we can change our medical system so that those individuals who decide to become doctors would have a easier route and a lesser need to charge so much. I personally believe a single payor system where doctors are compensated by a fair salary and their educational and living cost during their training is subsidized by the single payor entity.
 
Messages
40
Maybe a better question would be how we can change our medical system so that those individuals who decide to become doctors would have a easier route and a lesser need to charge so much.
no kidding. there are a lot of problems with our medical system, and this is a very good point indeed. esp as knowledge becomes more and more decentralized there ought to be easier and cheaper ways to obtain credentials. actually I have very casuallly considered the possibility attending med school myself and the thought of spending a million dollars upfront scares the crap out of me and one has to wonder why we are asking anyone to take on so much personal risk.

but $700 an hour, really? that's just outrageous. there has to be a way to get the services to the people who need it the most, and chronic fatigue patients need it very much indeed. in fact I wonder, very cynically, whether the reason no one's bothered to find a cure for chronic fatigue is because we all run out of money eventually and quit pestering the one family practice doc our crappy state-sponsored insurance will pay for us to visit, who, let's face it, is most likely relieved to see the back of us.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
Many of the dr.'s the have ME/CFS only practices charge more b/c they spend more time w/ patients. And a lot of extra time dealing w/ patient insurance companies and writing disability letters. Many of them also spend a good part of there time doing clinical research and just plain research to try and figure things out.

They can't get in a new patient every 10-15 minutes like a general practice. They still have overhead and staff and insurance. It's got to come from somewhere, if you want the time and the thorough eval. then it costs -- at least for the initial consult. I'm thinking people like peterson, lapp, cheney, etc...
 

Legendrew

Senior Member
Messages
541
Location
UK
My guess would be the extra time required, that being said I suspect on a slightly more cynical level that some may charge it because they know many patients are desperate enough to pay, whatever the cost may be.
 

Butydoc

Senior Member
Messages
790
My guess would be the extra time required, that being said I suspect on a slightly more cynical level that some may charge it because they know many patients are desperate enough to pay, whatever the cost may be.

Hi Legendrew,

Unfortunately there aren't many csf/me physicians. If a physician is completely booked and has no more room for new patients, his or her choice would be to see patients that can pay for their expertise or those patients that cannot afford to pay enough to cover overhead. Most physicians that I know, see some patients pro bono, but not such a volume that would affect the earnings. I don't see grocery stores giving away their food according to what one can afford. Neither does the gas company or water department. Unless health care is nationalized, then you should expect to pay for physicians who are in private practice.

Warm Regards,
Gary
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Hi Ricericerice,
Maybe a better question would be how we can change our medical system so that those individuals who decide to become doctors would have a easier route and a lesser need to charge so much. I personally believe a single payor system where doctors are compensated by a fair salary and their educational and living cost during their training is subsidized by the single payor entity.

Sounds like you're describing the NHS. Until recently all educational and living costs 9for all students) were paid for by the tax payer. Not so now.
Once employed by the NHS doctors are paid exceptionally good salaries, the best in Europe, most do a massive amount of work outside of their NHS work once they get to consultant level. A neurologist will charge £250 for an appt. I paid this, the neurologist didn't put his hands on me, took nothing of a history, in a word useless. But very well paid for being so.
 

Butydoc

Senior Member
Messages
790
Sounds like you're describing the NHS. Until recently all educational and living costs 9for all students) were paid for by the tax payer. Not so now.
Once employed by the NHS doctors are paid exceptionally good salaries, the best in Europe, most do a massive amount of work outside of their NHS work once they get to consultant level. A neurologist will charge £250 for an appt. I paid this, the neurologist didn't put his hands on me, took nothing of a history, in a word useless. But very well paid for being so.
I don't think the quality of physicians, either private practice or NHS, are any different. Their motivations may differ by how they are compensated.

Best,
Gary
 
Last edited:

Aileen

Senior Member
Messages
615
Location
Canada
All the various medical schools, hospitals, government health plans etc were set up in a different era. People died much younger and so we did not see the chronic conditions associated with old age. Testing was much simpler and less costly. An x-ray was as fancy as it got. Much of a doctors time was spent diagnosing childhood illnesses most kids no longer get. Far fewer medications existed.

Now we have new infections like Lyme, hoards of autoimmune diseases, fancy expensive tests and hospitals the size of small villages. We need a complete overhaul of our system. Doctor training, the organization of specialties. Who the patient first contacts, the referral system, how new technology is used etc. Also how doctors are paid, insurance schemes. Absolutely everything from the ground up.

Someone needs to pretend there is no such thing as a medical system, no formal medical training, no medical specialties, no payment schemes, no nothing. Start with a blank slate. It won't be easy.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I saw a specialist who didn't charge any more than my other docs and charged my insurance, which paid at my out-of-network rate, leaving me with a coinsurance but this was what I expected going in (family helped with the bill).

Frankly I was surprised how they could afford to pay the doctor and all the techs I saw on that amount (maybe they couldn't? as my insurance paid them a lot less than they asked, and more similar to an amount they pay my primary care doctor, but the visit I got at ME/CFS specialist was more similar to a visit at a specialist such as cardiology where they do extra things at the visit).

The lab tests were expensive but it is the lab and the insurer who decides this and the lab gets most of the money; the industry standard is to pay$30 or less for drawing blood, doing all the prep work, and mailing or couriering the tubes.

I’m afraid it's too much to expect that a"specialist" would necessarily mean they could offer a potential cure. In cancer this is sometimes possible, yes, though treatment failure often means death in cancer. But if you consider other illnesses where one might have a specialist like muscular dystrophy, Lupus, and Alzheimer's disease it becomes apparent that a specialist is simply someone with the appropriate training and experience to diagnose and manage a complex disease hopefully according to the best and latest scientific advances.

Usually they would have a board certification but we do not, as of yet, have that option as no certified specialty recognizes us as their practice area and we have not developed our own.
 
Last edited:

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
I have had personal friends who are/were doctors, dentists and I share the complaints, but candidly, if I were in their shoes I would do the same (and admit it)!

Maybe it's that we business people acknowledge our profit motives while doctors and lawyers
hold themselves above the laity with some 'higher calling' - and then get money for effort rather than
results that makes us disdain them so.

Close friends in the medical profession openly admit that it's the money that keeps them at it. The docs say if they had it do all over they would not get into a profession with all the details to attend to (responsibility, acessibily, and all the paperwork from insurance companies, and government regulations,
some absurd).

The dentists say that the government leaves them alone so they can charge whatever the market will bear.
...Now, you talk about a money-making business - hand over fist!

Recent media says the GP's are running for the the hills to get out of primary care - they are miserable,
poor things. Of course they don't deserve their own misery, or do they? Check these articles/links:

How Being a Doctor Became the Most Miserable Profession - The Daily Beast

12 Million Americans Misdiagnosed Every Year, New Study Shows

Only 12 million?!!! (Follow up to worst profession)

Synthesizing the results of three separate studies, researchers from Houston Veterans Affairs Medical Center and Baylor College of Medicine calculate ...

Source: http://www.forbes.com/sites/melanie...icans-misdiagnosed-every-year-study-suggests/
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
They dont all charge a lot more but some certainly do and I can understand this.

1/ Treating ME/cfs people takes more time during an appointment. Much more time.. Ive had first appointments with CFS specialist which was 5hrs! (my case is very complex) with a 3 hr follow up appointment (interestingly that one didnt charge me and just took my medicare.. but he certainly wasnt getting paid for all that itme), ones after that were all around 1hr to 1.5hr appointments.

2/ The doctor to be a good ME/CFS specialist has had to put in a heck of a lot of time looking into this disease.. answers on what to do and how to help us are not like handed to them on a silver platter with easy to follow recommendations on how to "successfully" succede in helping us (unless they want to follow the standard route and try to get us to do GET and CBT).

3/ We are the "heartsink" patients which other doctors dont want, we are stressful for doctors to try to be dealing with.

4/ Maybe they deserve a bit more as these doctors are often putting themeselves at some risk esp those who are doing a little experimental treatment with us.. as their treatments of us arent standard and may not be very accepted by other doctors or the medial profession who may rather have us all doing GET and CBT. Doctors have been kicked out of places and lost licences for trying to help ME/cfs people.
 
Messages
15,786
And don't forget the costs and inconveniences of lawsuits and liability insurance. Some nut in the US is already suing KDM there because he won't prescribe a certain drug o_O The patient has 0 chance of winning, but the lawsuit still has to be responded to, a lawyer consulted regarding the procedures and formatting, etc etc. I think some patients have mentioned his fees being much higher in the US, and that's probably a big part of the cause.
 

NK17

Senior Member
Messages
592
Honestly I don't find a $ 350 charge for 1 and 1/2 hr or more time with an ME/CFS specialist so scandalous.

What is scandalous is that the ME/CFS dr can't accept any insurance so far because the insurance will dictate an average visit of 18 minutes!

What is scandalous is the small number of ME/CFS specialist that exist!

There is no way I could be able to expose and explain my decades long symptoms to a dr. like Montoya or Kogelnik in 18 minutes.

We are human beings and as such should get enough time during a medical visit, no matter what reason has brought us to see the doctor, ME/CFS or a wart!

What is scandalous and broken is the system as described by @Butydoc and others on PR.

Of course I'd love to pay my specialist €60 for a visit, but I wouldn't want to pay all the extensive and expensive tests.

In an ideal world there would be many ME/CFS drs to choose from, our disease would be taught in medical school, it would be recognized and respected and feared by the public opinion, just like MS or Lupus are, and we would have centers of excellence in every country, everywhere in the world where ME/CFS is present.

I want to be one of the millions of PWME that shapes the future of how this disease is going to be treated.
 
Last edited:

manna

Senior Member
Messages
392
they should charge, those who can pay, according to their total recovery success rate. if thats zilch, or very low, percentage wise, then you're as good as a guinea pig in a trial and they should be paying you for allowing them to test their theories out. as for anti-biotic protocols, they couldn't pay me enough to take their "medicine".