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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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why the hell do chronic fatigue specialists charge so much?

Discussion in 'ME/CFS Doctors' started by ricericerice!, May 24, 2014.

  1. Butydoc

    Butydoc

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    Hi Manna,

    I think you have a misunderstanding of what a doctor responsibilities are. Given that all people die eventually, then it must be assumed that a physician can't save everyone from their ultimate fate. Most physicians use their knowledge and skills to alleviate suffering and try to improve ones health. Many diseases have no cure, but that doesn't mean that a physician should give up on that patient. If as you propose to have physician pay for patients that are not cured or made better by their intervention, then I doubt any doctor would try and treat cfs/me patients. Again there are many diseases that cures are unknown, but that doesn't prevent most physician from trying to alleviate symptoms search for a cure. It sounds like you are more frustrated with the disease, csf/me, than the doctors who try and help us with this devastating scourge.
    Wayne, Valentijn, merylg and 8 others like this.
  2. xchocoholic

    xchocoholic Senior Member

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    Or is it that some people learn more easily than others so keeping up with the latest info isn't a strain for them ? In which case, quality of care would be higher. This is how I view integrative doctors.

    I'm all for government paying for educating medical professionals as long as Big Pharma isn't influencing what is taught. Teaching preventative care should be the priority.

    Tx for adding your perspective. It's good to get an insiders point of view.

    Tc .. x
    Last edited: May 25, 2014
    merylg and Butydoc like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    At the end of the day if a patient cant afford to see a doc then the doc doesnt earn money. If costs rise higher then peoples incomes then its probably going to happen.

    I try not to let it get to me but sometimes it does when it comes to wages. As my job as a paramedic i assess patients and treat accordingly with medications, iv's, advanced airways, chest decompression, ecg interpretation, defibrillators, carry narcotics to ease peoples pain. These skills are mostly doctor type skills and decisions. Theres no consultation for these things with a doctor, its all off our own bat. Then i take into account that many patients are aggressive to us, spit at us, throw punches. We drive under dangerous conditions in traffic. We dont get backed up by our management with complaints, many are just rediculous. Manual handling is a big issues as most of us have bad backs/shoulders with cases where awkward lifting is involved etc. I have also had a couple of work mates that have committed suicide due to PTSD

    Its now a degree qualified job with a 1 year post grad year before becoming fully qualified. Every 2 years for quite awhile more skills and drugs have been given to us, upskilled with no compensation.

    What grinds my gears and i will say these people deserve the money they get, but receptionists at the hospital are payed $3-4 extra per hour then us, nurses another $5-15 extra an hour above us. For the life of me i cant see how this is fair. I guess different awards and unions etc i guess. If i think about it too much i get angry.

    Another example i will mention was i had to transfer a cardiac patient from one private hospital to another. We were waiting awhile and i asked the nurse why we were waiting. They said for the doctor to come and put in an IV, i said really?? u cant do it, some policy there. But she said u can if u want, so to save time i put one in which took all of a minute. Then the nurse said to me that the doc gets $50 an IV, i said what! joking? I would be rich. I guess i made a doc $50 richer??

    I have just learnt to take it on the chin. I mostly enjoy my job. Its also dam hard to keep working to make a living with cfs/me. Im lucky in that i have been helped aquiring medications that have helped me to keep functioning, something i would never have been able to afford.

    So thats my little rant and it goes off in this head of mine when i see high cost of some medical care which i cant afford.

    :bang-head: :thumbsup:
    Last edited: May 25, 2014
  4. Stretched

    Stretched

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    Interesting insights, make sense. Not readily evident, especially when one feels short shifted because of our own knowledge amassed over years of focused research.

    IMO, PWC's money are valid in many regards. The medical system s broken (per advocate Hillary Clinton)... .

    Have you ever called a doc's office and been told 'we don't treat ME or CFS' - on 3 successive calls, sic to 3 different doctors? That will bring out the cynicism in the most fervent. ...I wish I could meet a doctor who knows more than me... .
    merylg, heapsreal and taniaaust1 like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    That is sad. Yes, his fees are higher in the US, yet he is not taking a salary. He is just paying for running the clinic and paying malpractice insurance.

    Sushi
    Wayne, Valentijn, merylg and 2 others like this.
  6. Aerose91

    Aerose91 Senior Member

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    I can agree with this. I called Dr Galland in NYC because I heard he is one of the best and they told me he charges $1150 PER HOUR! That's not including tests and his follow ups are $450 for a half hour. I told her their insane- that's more than the president makes.
  7. barbc56

    barbc56 Senior Member

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    I could be misremembering but didn't KDM patent something? I would think that would bring in the money. One organization called for his resignation because he waited to disclose this information.
    http://www.ncf-net.org/forum/CallForResignation.htm

    http://www.medhelp.org/posts/Lyme-D...r-and-the-National-CFS-Foundation/show/963997
    That being said, atm, I don't remember the credibility of the NCF, how factual the statements are as well as the treatment.
    Barb
  8. taniaaust1

    taniaaust1 Senior Member

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    Yes.. I went throu over 30 doctors before I found one willing to just have me as a patient (even for other things) due to me having ME/CFS. Even the last two good GPs I have had, said they wouldnt take me on as a patient unless I had a CFS specialist involved in my care!. That's kind of sad since I know ME/CFS people who cant even get into a CFS specialist at all and I was without one myself for a very long time. Many with us are left completely without doctors at all due to this.
    ricericerice!, WillowJ and merylg like this.
  9. taniaaust1

    taniaaust1 Senior Member

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    All I can say is he's not all that well known in this field (Ive never heard of him before) so he probably wouldnt of been much help anyway. You've probably done yourself a favour by not going to him.
  10. Aerose91

    Aerose91 Senior Member

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    I agree.
    I was looking for a good doctor to treat gut issues and dysbiosis and all the articles I was reading were written by him and word is he's the best in that particular field. Not good enough for that price though
  11. Valentijn

    Valentijn Activity Level: 3

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    We need specialists, just like anyone else with a complicated and chronic illness. I don't expect a GP to know anything about ME/CFS, and certainly not more than I do. But my specialist does know more about it than I do, and he stays caught up with the latest research in the field.

    A GP can't know enough about every illness to be able to treat ours. It isn't their job, and it would be way too much information for any person to handle. The problem arises because there aren't specialists in most geographic locations, and we're physically or financially unable to seek treatment from a specialist. This leaves the GPs stuck with taking care of things they aren't qualified to take care of.
    rosie26, NK17, SOC and 1 other person like this.
  12. Daffodil

    Daffodil Senior Member

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    the cfs specialists I have seen charged anywhere from 350 an hour to 1000.

    I don't think its all about overhead.

    that is why Canada has so few good docs left. they can simply make more money in the USA, despite higher insurance premiums, because there is no limit to the amount they can charge.
    ricericerice! likes this.
  13. manna

    manna Senior Member

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    A G.P., a private G.P., a naturopathic Doctor, an NHS ME/CFS "specialist" or a Private ME/cfs "specialist" etc?...these could be said to all have different responsibilities. to discuss "charging" meaningfully you would have to take each "specialist" at a time and weigh up their expectations, patient expectation, actuall skill, as opposed to hoped for skill (up for wide interpretation) etc. theres no blanket statement for this, mine included, if it were that.

    *anyone.

    attempt* to use their "knowledge" and "skills" to alleviate suffering etc. their approaches could do the opposite so worth then becomes one's understanding and opinion. the truth and usefullness of their "knowledge" is up for interpretation. no doubt best intentions
    many diseases that are claimed to be incurable, probably aren't. if you're there for relief and get that, great. if you don't get relief its not necessarily their fault either. if you're driving force to be there is cure, and in some way you've been led to think thats possible, then theirs some responsibility on the part of the physician. also patients themselves are responsibile for the unrealistric expectation of some treatments. a specialist might think their treatment to be good,doesn't make it so.

    i didn't propose that at all. if no recovery was forthcoming then it should be cheaper, or a part refund given, but only if cure was ever the carrot. of course, none would promise recovery, they'll let external sources and forums imply that, but with the retox issue and crashes etc, less than that is not really meaningfull, imo. if you don't recover in me/cfs you'll probably revert to pre-treatment state, regardless of whether you went for relief or cure...making either less meaningfull. of course if a "specialist" tells you to give up gluten and you do and feel better, then you have something that can be lastingly helpfull. but then info is generally, and imo, should always be, free. folk are there because apparently they understand better, but do they? in some cases, yes, in most, no...and to match their "knowledge" isn't difficult. no dfoubt many patients know as much if not more.

    what makes you say im more frustrated with the illness than the doctors? i believe i understand it, as far as me goes. i believe i can cure it 100% as far as me goes, at least. i think its ludicrous and laughable, the hoo hah around some me/cfs specialists. ive watched it for years.

    so it might be better to be specific about which "specialist" one is alluding to when trying to decide worth. even then its opinion.
    Last edited: May 26, 2014
  14. shah78

    shah78 Senior Member

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    Freddd's methylation protocol costs me about $75 a year. The RS+probiotics cost about $150 /yr. The phosolipids Radio advocates cost $300/year. A good Paleo diet costs about the same as a SAD diet. A cold tub for (therogenesis) costs a little over $100 , with foam insulation. A chest freezer for meat/ice costs under @200. I'm a big fan of Krisnamurti (see just above in Manna'a answer)as well. "The key is in your hand." and it isn't very expensive!
    Wayne and manna like this.
  15. ricericerice!

    ricericerice!

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    actually I would argue that the trends of globalization and environmental degradation are what's driving the paradigm shift. I mean, I got ME at age 18. and I'm not the only one.

    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.

    really disgusted with these clowns. enough is enough. last time I went to visit the doc he told me a story about a youtube video he'd seen about drinking juice. I'd pay not to listen to that.
  16. ricericerice!

    ricericerice!

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    I wonder if this is grounds for a class action lawsuit. I'm serious. probably the cdc, but maybe the medical schools.
    Stretched likes this.
  17. SOC

    SOC Moderator and Senior Member

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    Have you actually seen one of the top ME/CFS docs? They are not so ignorant and arrogant.
    Valentijn likes this.
  18. ricericerice!

    ricericerice!

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    you forget that medical care is for rich people.
  19. SOC

    SOC Moderator and Senior Member

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

    ggingues $10 gift code at iHerb GAS343 of $40

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    Don't worry, Obamacare will save you!

    GG

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