quandry question on why they do or don't treat

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Feb 24, 2009.

  1. simonedb

    simonedb Member

    I cannot figure this out. Some say that medical estalishment neglects cfids fm patients because don't want to pay for needed evals and treatment, but then there is the situation where people say that the pharmaceutical co.s exploit certain illnesses to make money off of medications, like azt back in the 80s with hiv and all kinds of modern meds.....
    so its paradoxical to me
    if making money off sick people is profitable why wouldnt they have found a way to cash in on this 20 years ago?
  2. kat0465

    kat0465 New Member

    and Fast!! i see all kinds of commercials for fibro, now that it's somewhat a recognized disease.before there wasen't Squat!that is Big Pharma. Now the Dr's thats another story. im sure when they start getting big kickbacks for writing scripts for Lyrica, Cymbalta, and a few others then they will pay a lot more attention, even if the meds aren't helping very much.
  3. mindblower

    mindblower New Member

    "if making money off sick people is profitable why wouldnt they have found a way to cash in on this[cfids] 20 years ago?"

    Whoa! They've long ALREADY have been cashing in on it!!!

    There's no quandry, no paradox, nothing to figure out about this, just the teasing out of this false assumption in the minds of all we with ME/CFS. Check it out:

    1) There is NO such thing as ME/CFS, CFIDS or even CFS(depression really) in the minds of most of mainstream medicine(it predominantly remains a PRACTICAL NONE ENTITY, still after all these years, though, no doubt, the distinction is quite vivid for us).

    2) The ADs, Sleep Meds., and Stimulants marketed and sold through regular MDs, Psychiatrists, etc.. are how they've cashed in on CFIDS and several diagnosis that can have a vague chronic fatigue symptom (or this combined with sleep issues) over the last few decades.

    3) Recognizing CFIDS as a unique diagnosis is irrelevant to medical marketing, not seen by them as their job even if some happen to notice something different. What medical marketing has been taking advantage of, to make the fast easy profit, is the clear "identifiable with" chronic fatigue symptom, which applies to at least 30 distinct medical diagnosis, including of course, CFIDS(depression, whatever), which can eat their cake too...for some cash!

    4) The ethic of responsibility that treatments actually work for the patient in both mainstream and alternative medicine largely remains missing in action as a priority over profit.


    [This Message was Edited on 02/25/2009]
  4. simonedb

    simonedb Member

    but it seems like it would have been just as profitable to deal with the reality of the situation, I guess I am confused in what situations its profitable for them to run tests and prescribe medicines. some people complain that unneccessary testing is done on older folks just to bill for the tests yet hmos, managed care also discourage running tests to save money. so do they or dont they want to make money off tests and meds? or is there a conflict between the pharm co.s and the managed care people? who does or doesnt make money off of echocardiograms and lab testing, eegs, ekgs, tilttable tests, ultrasounds etc etc
    It seems like part of the problem has been cultural, that anglo work ethic judgemental thing, that unless you are on the ground bleeding you should get up and do your share or else you're deemed nuts and lazy.
  5. mindblower

    mindblower New Member

    "but it seems like it would have been just as profitable to deal with the reality of the situation...
    It seems like part of the problem has been cultural, that anglo work ethic judgemental thing, that unless you are on the ground bleeding you should get up and do your share or else you're deemed nuts and lazy."

    Mainstream medicine, both big pharma or managed care, don't as a practical matter acknowledge a "reality of the situation(ie, cfids)". However, "nuts and lazy", as you say, is clearly acknowledged.

    This is the what they're profitably(albeit ineffectively to us) treating, selling meds. to, doing tests on, etc, in their eyes. We happen to call it cfids or whatever.

    The significance of this point, our voice, falls deaf on their ears. Mainstream medicine and alternative medicine, both for reasons of lack of integrity and unconscious cultural blindness, have yet to discover us and this distinct diagnosis!


    [This Message was Edited on 02/26/2009]
  6. daylight

    daylight New Member

    For years I was treated only with antidepressants(for FM)which had no affect on my physical problems.
    No extra blood testing was done until last year. Because I was written off as having a somatic disorder. Well last year everything changed. I was dx with severe RA,raynauds,copd,spondolitis,stenosis and now lupus. However if you look at my chart it still reads also "possible fm/somatic disorder/depression" (on top of all the other stuff).
    "How be it patient denies depression".
    The doctors also made a point of writing that I refused to take or try any more antidepressants.
    Also they reported that I refused to see a counselor. Well I've seen 2 shrinks who both say that there is nothing mentally wrong with me other than some very mild depression that in the opinion didn't need to be treated .
    So my point is that because these doctors turned a "blind" eye to what was happening to me
    I went without the treatment that I needed. Now I have permanent deformity /disability for it.

    I believe that FM and CFS are very real problems but I also believe that in some people that it
    may be a secondary problem to another illness. (that is in some cases)

    And why are the patients having to suffer more because of doctors non belief in this illness?
    We didn't diagnose ourselves. For the life of me I can't understand how a doctor can diagnose you with FM or CFS then say that there is nothing more that they can do for you. All you need is excersize and a antidepressant or a dog?????
    This is what I was told to do. We deserve to be treated better than this.

    There an old quote that fits here:

    Physician heal thy self .

  7. MnekoM

    MnekoM New Member

    I cannot stand those commercials trying to sell useless meds to FM patients. It's so obvious those actresses don't have FM. The one with Lyrica - a grey hair woman saying something like , "I had my FM pain aaal ooover but my doctor recommended Lyrica and I feel much better now." The way this woman says that she has never experienced pain in her life! She sounds like she is talking about a muscle soreness after a workout or something! FM pain cannot go away like that. The commercial trivializes the pain and suffering of FM. It makes me so mad that I almost broke my and other's TV several times. They are definitely targeting FM patients to make profit with their useless and even dangerous drugs. They know that we are desperate to try anything to survive.

    I've tried Lyrica which only made me gain weight and did not help with pain at all. Cymbalta helped some for a year and then it stopped working. When I stopped taking it, I had the worst withdrawal side-effects which almost cost my life. No one informed me about them. Their commercial slogan "Cymbala treats both depression and pain" "Cymbala can help." makes the drug so desirable for FM. When I stopped the drug, I started suffering mini-seizures all day for about a month. I thought I was going to die. I think people should be informed about ALL (not just the ones the drug company chooses to disclose) the possible side-effects BEFORE considering to take the drug.

    FM is a systemic malfunction of the body that NO one drug will cure it.
  8. kjfms

    kjfms Member

    You can't please everyone all of the time!

    Thank you,

    [This Message was Edited on 02/26/2009]
  9. simonedb

    simonedb Member

    I just like to get to the bottom of a problem, not nec. as a gripe session only, just as a logic equation. it dawned on me I have seen evidence of meds and med procedures pushed on people to make money and also denied to people to save money, so I am curious, which is it and how does it relate to the difficulites people with these sorts of disorders sometimes have in getting treated. wondering if there is a pattern is all or bottom line answer to a puzzle. i appreciate and find interesting though everyone's experiences.
  10. kjfms

    kjfms Member

    I really think it depends if a person has a good physician or a not so good physician. I am lucky that I have an excellent physician.
  11. TeaBisqit

    TeaBisqit Member

    First of all, for the medical establishment, we are very profitable. We are twenty patients in one. They make a fortune off the tests we need and the endless supplies of drugs to try out that never work. The more we go to the doctor, the more money they make. There is no reason to cure us because that would cut profits.

    There is a paradox of them denying we exist. I'm not really sure why, but I think so the psychiatric establishment can make more money.

    We are far from crazy. And what angers me the most is that in my case, an IV antibiotic was helping me, but the insurance refused to continue to pay, so I was thrown off it and after that, my condition went chronic. The doctor at the time refused to give me more treatment not just because of the insurance, but because there is no blood test for CFIDS/FM/ME. Had treatment continued, there's a very good chance I never would have ended up this sick. It could just be Advanced Lyme and that's why it was helping, but who knows. The point is, I obviously needed real medical antibiotic treatment and not happy pills.

    Alot of doctors are in this solely for the money and their kickbacks. My uncle, the hematologist doctor, is only in it for the money. He gets huge kickbacks from drug companies that you wouldn't believe. He gets free cruises, free vacations, free dinners, the list goes on. It is in his best interest to only push whatever drug will get him his next vacation and that's what he does. If the Cymbalta or Lyrica companies offer him a vacation in the Bahamas for his entire family, that is what he will shove down your throat, no matter if it doesn't work or harms you. When you walk into his office, you are just another token for his next free perk. And he vehemently denies CFIDS/FM/ME exist. However, if he suddenly were to get expensive free perks for our illness, I am sure he would be jumping up and down to diagnose it. That's what we are dealing with.

    Another trend that seems to be much newer is the doctors who are no longer taking new patients. Just about every doc in my area is no longer accepting new patients. What is that? Why is that? And how are we supposed to get help if no one is accepting new patients??? My only two choices now on my new insurance are one doc at a place where I can't park and the other one is some foreign guy that I'm not sure I'd be too comfy with. There are no other choices in my area. And that's not fair. I don't think all these docs should be allowed to say they won't take new patients.
  12. Bluebottle

    Bluebottle New Member

    Here in the UK the psychiatric profession, also working for the private insurance companies and Dept. of Work and Pensions, have been making a mint by pretending that CFS is a somatoform (imaginary) disorder. They've taken all the government's research and treatment millions, whilst insisting that we do not have biomedical testing in case doing so reinforces our 'aberrant illness belief'.

    Our Veterinary Times of 2/3/09 has reported that CFS in horses is not only equally debilitating and as frustrating to treat as human CFS, it is also little understood. Small studies link equine CFS to enterovirus infection and parasitic bacteria.

    I'd like to hear the slippery psychiatrists explain why is it imaginary in humans, yet caused by an ongoing infection in horses.
  13. Catseye

    Catseye Member

    There is no grand conspiracy or secret, it's just that people are gullible. The way to build an income in private medical practice is to hook patients on drugs that continually require re-examination, testing and prescription renewal. First, you have to understand the difference between crisis management and chronic disease. Crisis management is when you have a heart attack or something immediately threatening your life. Doctors are good at saving us in these cases. But when they try to treat chronic diseases, they ignore the root causes and only focus on alleviation of symptoms. It is a big scam and I can't believe people have fallen for it for so long.

    TeaBisqit is right. You have to stop thinking of the medical profession as health care. It is a business and their business is medicine. It has nothing to do with health. You can't patent natural substances so the medical companies have to continuously synthesize new products to test on animals and 3rd world children first to see if they can get it passed through the FDA as a "treatment" for a particular disease, and they keep making up new ones as they go along. CFS/fibro are just a couple of the made up diseases. Virtually all chronic diseases have pathogens and digestive problems as their root causes. And these are treatable with diet and non-patentable substances.

    If it's not patentable, it's not a money maker because to get it passed through the FDA, they need to spend millions of dollars and if they don't have patent protection on that substance, they can't make the money back. Even the American Cancer Society, who asks for public donations, says right on their website that they only are interested in patentable cures for cancer. Isn't that sick? Here they are asking for money, but they don't bother to tell people that they are seeking patents ONLY and that they want a piece of it. So they are NOT looking for a cure for cancer, they are only looking for a PROFITABLE cure for cancer and they even have that in their website, but you have to hunt for it. I've posted about that on here before, with the link to where they said it, and it doesn't seem to really bother anybody. If a drug company passed bromelain (a digestive enzyme) or garlic (both non-patentable substances because they are natural) as treatments for pathogens and digestive ills, then anybody would be able to sell them as treatments even though the company that paid to have it passed through the FDA spent all the money on research and trials. They would essentially be doing the work and spending the money for every other entity who sells garlic. And then, we would just start growing garlic and pineapples in our homes, anyway. They are not profitable substances as far as disease treatments go.

    Patents constantly run out on drugs and they have to come up with new ones or everyone will just buy the generic, cheaper brand. So they make new drugs to do what the old ones do and they aren't even necessarily "new and improved", it just means the patent ran out on the old drug. My diabetic friend was switched to a new diabetes drug even though the old one was working just fine. The new one didn't work and the doc was reluctant to put him back on the old one, he kept wanting him to try new ones. Pretty disgusting.

    The goal of the drug companies is to get everybody on a drug. They'll find a reason. It doesn't even matter if your doctor "cares" or not. He went to medical school, he learned drug sales, NOT health care. Doctors are not taught about pathogen and intestinal problems as the root causes of almost everything so they just don't know what to do. Things like garlic and oil of oregano are life savers, but you'll have to find that out on your own, you won't hear it from a doctor. It's apparent to those in charge that if they fix you, you won't need drugs and follow up visits - it's a hefty cut in their income to fix you. It's infinitely more profitable to keep you on drugs. But what is so nasty and despicable about this profession is that the drugs are guaranteed to cause other problems in the long or short run and they never address the root cause, anyway. Maybe a "caring" doctor is not aware of this but since the knowledge is all over the internet now for everyone to see, he has no excuses other than greed and laziness for keeping himself in the dark. Some people refuse to believe this could happen even though the evidence is all over, mostly their own diseased self looking on the computer for answers. Their belief is their downfall. You can't fix something if you are under the mistaken belief it can't be fixed. A decapitation cannot be fixed, cfs and fibro can.

    If I can figure it out and the whole medical profession can't, then something smells. See beatcfsandfms.org for what to do - I don't know about the fibro protocol because I haven't had firsthand experience with that, but for cfs they are right no, so I would bet they know what they are talking about with fibro, too. Don't waste your time with a medical doctor. Just because he has relieved a couple of symptoms doesn't mean you are any better. The damage is still being done down at the roots and there's no reason why you shouldn't try to get healthy. Doctors use medicine for chronic diseases and that's exactly what we don't need in those cases - only for crisis management, an immediate threat to life. If people keep coddling doctors, they will keep scamming us with bogus treatments. The truth is an enormous threat to the medical industry with their billions of dollars in bogus income. I guess Obama won't want to touch on this mess anytime soon. It's the same conflict of interest with doctors as it is with used car salesmen. They are selling something and making money on it. So where's the incentive to make sure you are coming out the winner in the end and not just marginally satisfied while keeping everything legal? Some people put doctors on a pedestal but thumb their noses at used car salesmen. Maybe the car guy should start wearing a white coat and stethoscope, he may appeal to some people by looking like he really cares about them. Doctors are the only salesmen allowed to get away with murder.
  14. simonedb

    simonedb Member

    eloquently put you guys, thanks. I agree with all that has been said.
    I do have some good ideas for tx from these boards, my own research, and the decent functional medicine docs I have consulted who have broken away from the mainstream.
    I just still continue to get perplexed about all of the above though, its hard for me to let it go, why it has to be that way.
    I also do get confused too about some of the competing research from the good guys, there are many directions one could go for tx.
    It does seem the best minds have said treat the gut is very important.
    I am still curious about antibiotics and antivirals though and how that may tie in but that would be another thread, but bluebottle, how do they test horses for infections and bacteria:"Small studies link equine CFS to enterovirus infection and parasitic bacteria."
  15. Bluebottle

    Bluebottle New Member

    Vets find viruses, bacteria and parasites by looking at animals' blood through a microscope.

    I don't know about the US, but here in the UK it is illegal for a doctor to diagnose by live blood microscopy. Why?

    I know that I have Lyme disease and co-infections, including parasites, because my blood has been examined by live blood dark field microscopy. The doctor who did it works under constant threat of suspension by the medical authorities here. I cannot obtain treatment under our UK national health service, who prefer to treat me as if I have an 'aberrant illness belief'. I do not have health insurance, but could not obtain biomedical treatment even if I did.

    The whole situation is immoral.
  16. gapsych

    gapsych New Member

    If they found something to cure us, someone could make a lot of money.

    I don't think there is a "conspiracy" per say but money is a factor in both real medicine and alternative medicine. Most things in our economy are money driven.

    Barrows, I am so glad you have found something that works for you. However, I do not see how you can compare yourself to doctors who have had years of experience and training. Maybe you are also just treating your symptoms? I don't know.

    And talk about gullible. A lot of the advertisement and availability of alternative medicine is geared towards making money.

    You appear to be knowledgeable about some things and that deserves to be applauded, but to make a leap that it will cure everything and to discount anything that is not alternative is tunnel vision. Tunnel vision does not lead to thinking out of the box which might be helpful in finding something to help us.

    It may be that there is no cure and doctor's can only relieve symptoms. I don't think we know yet, but hopefully someday.

    Stay well. I'm really glad for you.

    [This Message was Edited on 02/27/2009]
    [This Message was Edited on 02/27/2009]
  17. gapsych

    gapsych New Member

    According to its supporters, Live Blood Analysis marks "a new era of scientific discovery" which is presently conquering the UK. One of the growing number of websites advocating this latest diagnostic tool describes its impact thus: "As the horse gave way to the horseless carriage, so must science now accommodate a new understanding of the body as a whole."

    The principle of LBA is fairly simple: a drop of blood is taken from your fingertip, put on a glass plate and viewed via a microscope on a video screen. Despite the claims made for it, LBA is by no means new; using his lately developed microscope, Antony van Leeuwenhoek observed in 1686 that living blood cells changed shape during circulation. Ever since, doctors, scientists and others have studied blood samples in this and other ways.

    What is new, however, is what today's "holistic practitioners" claim to be able to do with LBA. Proponents believe that the method provides information "about the state of the immune system, possible vitamin deficiencies, amount of toxicity, pH and mineral imbalance, areas of concern and weaknesses, fungus and yeast", as another website puts it.

    Others dare to be much more concrete and claim that they can "spot cancer and other degenerative immune system diseases up to two years before they would otherwise be detectable"; or say they can diagnose "lack of oxygen in the blood, low trace minerals, lack of exercise, too much alcohol or yeast, weak kidneys, bladder or spleen". All this would amount to a remarkable discovery if it were true. But it's not.

    No credible scientific studies have demonstrated the reliability of LBA for detecting any of the above conditions. In what was, to the best of my knowledge, the first attempt to assess the value of this method, a practitioner with several years of experience in LBA tested the samples of 110 patients. Twelve had cancer and the task was to identify their samples without knowing further details. The results could hardly have been more disconcerting - just three of the 12 with confirmed cancer were detected, and the authors concluded that the method "does not seem to reliably detect cancer. Clinical use of the method can therefore not be recommended."

    So why are holistic practitioners becoming so fond of it? Seeing one's own blood cells on a video screen is, admittedly, a powerful experience. It gives patients the impression of hi-tech, cutting edge science combined with holistic care. And impressed patients are ready to part with a lot of money. American websites explain how a practitioner can make $100,000 (£57,000) annually by purchasing the equipment necessary for performing LBA. The bulk of this money is made not through charging for the test itself but by selling expensive nutritional supplements to the patient with the promise that these will correct whatever abnormality has been diagnosed.

    In other words, patients are potentially cheated three times over. First, you are diagnosed with a "condition" you don't have; then a lengthy and expensive treatment ensues; and finally the bogus test is repeated and you are declared "improved" or "back to normal".

    One of the most out-spoken promoters of LBA is James R Privitera, a doctor from California. In 1975, he was convicted for selling an illegal cancer "cure" and sentenced for six months. His medical licence was temporarily suspended, and he was placed on 10 years' probation. During this period, Privitera founded two companies for commercialising LBA.

    In the US, LBA is used by about 10,000 doctors and increasingly also by chiropractors and naturo-paths. The authorities are becoming concerned about the widespread use of an ineffectual technique. In June 2005, the state health department of Rhode Island ordered a chiropractor to stop performing LBA, stating that the public should be wary of anyone who offers it. In the UK, the General Medical Council recently investigated the case of a doctor making wild claims about LBA and eventually decided to issue him with a "letter of advice".

    Advocates of LBA continue to insist that it is a diagnostic method "valuable for the early detection of serious health conditions". In my view, it is fraudulent; those who promote ineffectual diagnostic methods for financial gain are charlatans, and patients who try them are being ripped off.

    · Edzard Ernst is professor of complementary medicine at the Peninsula medical school at the universities of Exeter and Plymouth.

    guardian.co.uk © Guardian News and Media Limited 2009
  18. gapsych

    gapsych New Member

    A lot of doctor's are not seeing the drug reps. or just ask them to drop off any samples. They just do not have the time. That is one reason doctor's are not taking new patients, time. Then we sometimes do not get to see a doctor who would be a match for us.

    My BIL is a hematologist/oncologist and he has never been offered a free vacation. He used to meet with the drug reps. when he first started practicing but that was 30 years ago. He does not now as he says it is a waste of time and has better things to do. He will let them drop off samples of some medications for patients who can not afford them.

    So I guess we even each other out, LOL!!

    Take care.
  19. kat0465

    kat0465 New Member

    Teabisqit, especially Dr's getting all those kick backs from writing certain scripts. my Gyno is set for life cause of Premarin scripts!! and as for actually FINDING a doc that will take a cfids/fibro Patient, Good luck!! if you even mention it they suddenly arent taking new patients. i can't find a simple GP within a 50 mile radius to touch me or my family, cause i have fibro and cfids, and we have excellent ins( thank god for that)so i drive 100 miles one way to see my doc.

    i think im gonna try a naturopath. thats one avenue i haven't tried yet. not only is this disease Physically crippling, But the mental & emotional are a whole other Monster.And they wonder why were depressed!!!