why the hell do chronic fatigue specialists charge so much?

[manna]

The are innumerable diseasese that are invariably fatal, so by your definition, there could be no medical specialists for those diseases.

or, they are fatal because the so-called "specialists" aren't that at all...but are reductionist thinking big pharma drug dealers who have little understanding of disease processes and only know that certain toxic meds give a certain reaction/result, hopefully without being fatal. perhaps there really aren't any actual specialists...just they're called that. or their specialisation prevents seeing the problem as a whole.

what we're discussing is what is meant, or inferred by, the tem "specialist". this

a doctor who has special training in and knowledge of a particular area of medicine:

from http://dictionary.cambridge.org/dictionary/british/specialist?q=specialist

is there even special training for me/cfs? who decides if that knowledge makes the person a specialist? if its merely someone who has put alot of time and effort into trying to understand a condition then the term specialist has little meaning. and me/cfs, by its nature, is a multi-system problem requiring, if anything, a non specialised approach. the specialist can never perceive the whole.

 

[Aerose91]

is there even special training for me/cfs? who decides if that knowledge makes the person a specialist? if its merely someone who has put alot of time and effort into trying to understand a condition then the term specialist has little meaning. and me/cfs, by its nature, is a multi-system problem requiring, if anything, a non specialised approach. the specialist can never perceive the whole.

In medical school, no. In my travels all ME docs are self taught. So, in theory if an ME patient had the medical background of a GP one could do their own research and become as knowledgeable as most ME docs

 

[Aerose91]

I guess I'm lucky. The 3 ME/CFS specialist clinics (conventional med, not alternative) I've been to all took insurance. I did check in advance, of course, and wouldn't have gone to them if they didn't.

Wow, Yeah I guess so. I just assumed no ME docs accepted insurance. Nice to see some are giving people legitimate ways to get help.

 

[Daffodil]

I find that most dedicated CFS docs have a personal reason for treating this disease. Either someone in their family has it, they had/have it, or a good friend has it....

 

[NK17]

Guys there are few Medical Doctors willing to practice medicine in the quagmire that ME/Cfs field is, thanks to the CDC and NIH's lies, neglect and approximative truth.

I know that most of these so called ME/Cfs 'specialists' have had a personal contact with a PWME, as @Daffodil has rightly said, and that sparked their interest and willingness to try to understand and treat.

They are Davids against Goliaths, they are trying to do what most other doctors don't do anymore, which is listen to the patients and practice medicine as a form of art and try to re-establish some form of social justice.

Not all of them are succeeding, not all their clinics are smoothly run, I think it's fair to say that they are human beings and as such have all the flaws that the rest of us have.

All I know is that we need them and we need more young and bright minds to come to the field and that is exactly what Ryan Prior with the Blue Ribbon Foundation is going to do. Embed 1st/2nd year medicine students in some ME/Cfs doctors' clinics, during the summer, for a payed internship to learn, to listen and get moved by our very human, difficult, tragic stories and decide to help.

 

[Daffodil]

would be nice if CFS specialists trained doctors too, but it seems that confidentiality / competition prevents this from happening enough.

I saw a specialist once whom my local doctor at the time, wanted to speak to. the specialist wanted his lawyer present and wanted a bunch of confidentiality forms signed, before he would agree to talk to him! so my local doctor just gave up on the idea.

 

[Valentijn]

would be nice if CFS specialists trained doctors too, but it seems that confidentiality / competition prevents this from happening enough.

KDM has been training doctors.

 

[Daffodil]

yes, thank God!

 

[SOC]

KDM has been training doctors.

So are Drs Klimas and Rey. Dr Lapp trained at least one new partner. Dr Montoya trained Dr Kogelnik, I believe.

 

[NK17]

So are Drs Klimas and Rey. Dr Lapp trained at least one new partner. Dr Montoya trained Dr Kogelnik, I believe.

Yes Dr. Andreas Kogelnik was a postgraduate fellow @ Stanford and worked whit Prof./Dr. Montoya until he decided to open his clinic, the Open Medicine Institute (www.openmedicineinstitute.org).
He is taking giant steps with his translational medicine approach and international collaboration called MERIT Myalgic Encephalomyelitis Round Table on Immunology and Treatment.
He is still collaborating with Dr. Montoya and doing seminal biomedical and genetics research with Prof. Ron A Davis also from Stanford.
Mark all of these names down, because they will change the face of medicine, discover what hasn't been discovered in the past and find treatments not only for ME/Cfs but for other neuro immune deseases.

PS I'm just one of his patients, not cured, not on the mend yet, but sure that this team is going to help us.

 

[Daffodil]

seems everyone is taking huge steps to try and help but we remain severely incapacitated. ugh. what a horrible illness

 

[*GG*]

Yes Dr. Andreas Kogelnik was a postgraduate fellow @ Stanford and worked whit Prof./Dr. Montoya until he decided to open his clinic, the Open Medicine Institute www.openmedicineinstitute.org

He is taking giant steps with his translational medicine approach and international collaboration called MERIT Myalgic Encephalomyelitis Round Table on Immunology and Treatment.

He is still collaborating with Dr. Montoya and doing seminal biomedical and genetics research with Prof. Ron A Davis also from Stanford.

Mark all of these names down, because they will change the face of medicine, discover what hasn't been discovered in the past and find treatments not only for ME/Cfs but for other neuro immune deseases.

PS I'm just one of his patients, not cured, not on the mend yet, but sure that this team is going to help us.

Hope is a good thing to have with this illness!

GG

 

[ricericerice!]

I'm not rich. I did bother to invest in insurance, however.

wasn't aware that 17-year-olds were expected to fund their own health insurance. but thanks for reminding me of how stupid and personally irresponsible I am.

 

[ricericerice!]

Don't worry, Obamacare will save you!

obamacare requires that you buy your own insurance. and not even medicare is free anymore. it's one of those cruel ironies where if you're poor enough to be on it, you're also too poor to afford the copays, even the premiums. have seriously considered forgoing it altogher, because $100 a month is too large a cut of my income for services which I hardly use.

would boycott the medical profession altogether if I thought it would make any difference, but instead it would appear that they're already boycotting us.

 

[WillowJ]

wasn't aware that 17-year-olds were expected to fund their own health insurance.

yeah, I'm in the same boat. Lots of us got ill as children or older teens, and have little to no long-term financial planning available.

fwiw, I don't think Medicare was ever free (and there is no income or asset test to qualify for coverage under Medicare, only work credits and age or disability... although there is means testing for higher coinsurance, for example).

If one qualifies for Extra Help, however, then the premium and copays for both Medicare and Medicaid (if one qualifies for this means-tested program) would be covered (or partially covered, depending on the rate of Extra Help they decide is needed).

 

[IreneF]

None of the CFS docs I've seen have been especially expensive. Some insurance plans will cover out-of-network docs at a reduced rate. What's expensive are the labs and the meds.

I thought Dr. Kogelnik was fairly reasonable, considering. I think he charges $450 for the first consult, but he spends a lot of time with you.

Dr. Montoya is employed by Stanford, so I just pay the standard co-pay, plus labs. And he spends at least an hour. He's notorious for running late.

Before moving to California I saw Dr. Pocinki in Washington, DC; he charges regular internist rates. I wasn't as sick then, and he mostly treated my orthostatic symptoms.

I think I'm lucky that my husband has a very good job with good insurance, and we've always lived in major cities. But it's not true that all CFS specialists charge a lot.

 

[chipmunk1]

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".

I guess I wouldn't be annoyed at specialists charging so much if so many docs weren't so stupid and arrogant. I'm related to one, and have dated another, and neither have managed yet to impress me with their intelligence, although maybe with their incredible emotional immaturity. either I'm really, really smart, or med school is for rich people. I was reading an article about immunology at the dinner table once, and family-doc peered over my shoulder to take a peek, and then gave up, deciding was "too deep". this is the same genius who is convinced that I've been suffering from depression all these years, despite severe photophobia and migraine headaches.

It all comes down to economics i would say. Supply and demand. There will always be a lot of demand because sick people have no choice. The supply is very limited.

They charge so much because they can. .

The fact that med school is so expensive is a convenient excuse. In many parts of europe education is far cheaper, they don't have to get into debt. The specialists there still overcharge a lot.

Let's face it: A large part of doctors get into medicine because of money, prestige power and some that i have known do admit it.

Doctors also like to think themselves as special and intelligent maybe because med school is so hard and demanding. But so are many other fields: Engineering for example. To become a doctor you don't have to be extremely bright you have to work hard and be persistent and memorize a lot. Most doctors i have known were not more intelligent than anyone else, some of them are actually surprisingly stupid sometimes even in their own field.

I suspect to a certain extent med school kills off independent thought and critical thinking skills. Medicine is authority based knowledge. A higher ranking doctor or professor writes something in a book and the doctors and students have to follow it. Questioning is considered to be dangerous. unprofessional or incompetent.

The patient is at the bottom of this food chain and is expected to follow the orders.from the top. The high priests on the top are considered to be infallible and are not to be questioned. If you get exposed to medical culture for while you are probably going to get corrupted by the system sooner or later. If i think back the few times a professional looked down on me it was always a doctor. I These were normal patient/doctor interactions in a hospital setting even no medically unexplanaible diseases involved.

What we can do is trying not to become a victim and refuse to play their silly power games with them.

 

[Gingergrrl]

I have found that the best doctors (in any specialty not just ME/CFS) at least in L.A. no longer take insurance. My naturopath, endocrinologist, etc, do not accept any insurance but they are excellent, smart, very thorough doctors who have each spent two hours at a time with me and respond to all my e-mail questions. They have both written numerous letters and forms for me for short-term disability and have gone above and beyond what any of the doctors do who take insurance IMO. And when they order lab tests or prescribe meds those are covered by insurance.

My assigned PCP (who does take insurance) spent maybe 10 min with me and said, "There is no cure or treatment for CFS" and had nothing to offer me. She ran thyroid tests that were useless/incorrect and had no knowledge of supplements or even something like POTS or dysautonomia.

The ME/CFS specialist that I am about to see does not take insurance but his initial appt is actually less than what I have paid for some of my other doctors initial consults (and all the lab work is covered by my insurance.) Whereas some of the other ME/CFS specialists (in the US) that I investigated charged at least 2-3x the cost for their initial consult of the doctor I ultimately chose.

 

[ricericerice!]

It all comes down to economics i would say. Supply and demand. There will always be a lot of demand because sick people have no choice. The supply is very limited.

that is morally reprehensible. if we could only get the word out then I know that public outrage would be on our side.

[This] is very bad for those of us who are permanently disabled. just like the gays made aids into a political issue, so will we if we expect anything to get done.

 

[Gingergrrl]

that is morally reprehensible. if we could only get the word out then I know that public outrage would be on our side.

[This] is very bad for those of us who are permanently disabled. just like the gays made aids into a political issue, so will we if we expect anything to get done.

I think the whole system is often morally reprehensible but I really don't think that (most) of the ME/CFS specialists are charging more than their colleagues in other fields for initial consultations. There are so few of them and they often spend hours with each patient and doing research and answering e-mails late into the night. I blame the entire system but am thankful for the specialists who often felt a calling to go into this field or have a personal connection to it.