An ethics question about CFS

Discussion in 'Fibromyalgia Main Forum' started by ravenpaige, Feb 10, 2007.

  1. ravenpaige

    ravenpaige New Member

    Here's a hypothetical question. Suppose you help a decision-making position in a large, populated country, and you discovered that there was a contagious disease that had gone unidentified until about .5% of the population had already been infected.

    ...And suppose that you currently had no cure for the disease, but all of your studies suggested that it was mainly not fatal, although for some it came with a high mobidity (level of pain and suffering).

    ...And suppose by your estimates, already 40,000 had caught this disease. And suppose your best estimates speculated that the general population would only be suseptible at a level of 5% overall.

    Would you?

    Immediately announce that a contagious disease was present and growing, and submit 40,000 people to a likely sub-existence in "leper colonies" until a cure could be found?

    Would you estimate the overall cost to the economy based on feeding and housing 40,000 disabled people in isolation for unknown years while a cure was sought?

    Or would you delay and obfuscate and deny? And tell people it was all in their heads? And insist there was no epidemic and choose to appear ineffective, incompetent and clueless?

    What would you do? (I love ethics questions!)
  2. Slayadragon

    Slayadragon New Member

    Why are the only choices keeping people quarantined or public denial?

    Except with a few really vicious diseases (e.g. typhoid), quarantines are pretty rare throughout history. Can you imagine trying to quarantine people with HIV or heptatis, for example?

    As far as I can tell, even leprosy colonies were optional for people with that disease in most places.

  3. Clay2

    Clay2 New Member

    I'd be so busy trying to pretend to balance the budget while handing out taxpayers' money to my big business buddies that I wouldn't even notice the problem.
  4. Slayadragon

    Slayadragon New Member

    If we're talking about the U.S., 0.5% would be about 1 million people. Wouldn't it?

    My guess is that 5% susceptibility is on the high side, even if you count those people who could get sick if they a) got really worn down and b) were exposed to the relevant virus at the same time.

    The estimate of 0.5% of the population may be more accurate, if you count people who have only a mild form of the disease. (I believe there are such people out there with "real CFS," even if not many of them appear on this board.)

    All just my opinions though.


  5. ravenpaige

    ravenpaige New Member

    Znewby
    Well, I suspect those are the right numbers, but I'm not sure if anyone really knows for sure.

    Lisa,
    I wanted to say first that I admire you courage! You are quite an inspiration to people here, I think.

    I'm not sure those are the only two choices, but I can't honestly think of any others, given the numbers I specified. No, I can't honestly imagine trying to quarantine people with HIV, much less hepatitis. I don't believe quarantines have ever been demonstated to actually work, throughout history, although I'm also not convinced that leprosy colonies were entirely optional.

    Well, it's an interesting hypothetical question, and I don't suppose we'll ever really know the answer unless, of course, the world ever finds itself in such a situation and then actually comes up with a cure for the disease.
  6. ravenpaige

    ravenpaige New Member

    Well, the US population, with a quick search, was estimated to be about 300 million (298,444,215 as of July 2006), so 5% would be about 15 million.
  7. Slayadragon

    Slayadragon New Member

    Didn't Japan recently do an epidemiological study on this? Typical, since their goal was to estimate work hours lost and then decide whether it was worth developing treatments.

    Anyway, I wonder what their numbers are? People in Asian societies tend to underreport things like depression because there's a social stigma, and so perhaps that would be the case with CFS too. Still, it would be interesting to have the numbers.

  8. Slayadragon

    Slayadragon New Member

    Thanks for your nice comment. We'll see how far my determination gets me.

    It seems to me the last thing that CFS sufferers have to worry about is being quarantined. All we'd have to do is tell people that there's nothing wrong with us except laziness. How could anyone tell the difference?

  9. ravenpaige

    ravenpaige New Member

    Thanks Erik. I suspected as much.
  10. foggygirl

    foggygirl New Member

    I just read on my "Google Alert" that 30% of people WORLD-WIDE have CFS and/or FM.

    But back to Ravenpaige's original scenario:

    What if (according to Donald Scotts claim) that our own US of A Government infected our own people with Microplasma causing these diseases, what do you think they'd do? Remember--they're all politictions to the core, and their typical response to anything that may be damaging to them is...drum roll here: Of course, downplay it, pretend it doesn't exist, all in our heads, just a bunch of lazy people who don't want to work...blame it on us, avoid the whole thing til that particular despot is out of office and let the next Senator/representative/president..deal with it. That's just politics, folks.

    Foggygirl
  11. ravenpaige

    ravenpaige New Member

    Wow. 30% would be a truly amazing number, especially for an illness that no one seems to be able to quantify.

    But yes, I think a lot of people have it, although 30 % sounds too high to me. Just in my own totally unscientific survey of people I know or relate to frequently, I can say that I believe that I, my daughter, my 2 sisters, 3 friends, and perhaps 1 or 2 ccworkers that I know of may have CFS. Of those, I don't believe any have been officially diagnosed with CFS, although there are three official diagnoses of fibromalgia, one of MS, and one of diabetic neoropathy with unresolved sleep disorders. So, I may be stretching things a bit. But I know, back 8 or so years ago, when I was looking for a diagnosis, one doctor suggested that I might have fibromyalgia. And I asked him: "So, can you do anything about that?" When he said no, I told him I didn't think that was very helpful then.

    So, I suspect that there are many who have not been officially diagnosed, or, like me, saw the fray and decided to stay out of it.
  12. foggygirl

    foggygirl New Member

    This 30% was combined CF and/or FM. Most stats I've read referred to only CF OR FM, and this is world-wide.

    Long past due for recognation, research, DOCTORS knowing about it, etc.

    Night all.

    Foggygirl
  13. Daisys

    Daisys Member

    This is a quote from the CDC press conference of Nov. 3, 2006. Dr. William Reeves said:
    ---------------------------
    The first objective in Wichita was to estimate the prevalence of CFS, the burden that it imposes on the population. To do this, we surveyed a quarter of the population of Wichita, and we collected information on 90,000 residents selected randomly. We then conducted more extensive clinical assessments of about 7,000 of those residents.

    From that study, we've documented the prevalence of CFS, the occurrence in the population; that the illness affects at least a million Americans.
    --------------------------------

    I'm sure that's a conservative estimate. And only 20% have been dxed or treated.

  14. Lichu3

    Lichu3 New Member

    Yes, I would agree that it's a conservative estimate. A government agency like the CDC would be careful about putting forth a larger number; I guess it's a bold move for them to even have an awareness campaign for a disease. I was in medicine and public health and the last time I remember a big launch for a specific condition (other than the usual stroke, heart disease, tobacco,etc. ), it was for HIV.
  15. Slayadragon

    Slayadragon New Member

    A lot of people today believe that most diseases have a viral component to them. Suspected ones include heart disease, cancer, and obesity. (Just to start off the list.)

    I seriously doubt that anybody's going to get locked up for being a public health risk for having those diseases.

  16. LittleBluestem

    LittleBluestem New Member

    An estimated 1 million people with ME/CFS in the U.S. (from the Wichita study) out of a population of approximately 300 million would be 0.333%. A good, round figure would probably be 0.5%.
  17. im sat watching a brit tv, morning problem solving show,i wont name it,but its popular over here.

    anyway the guy has a guest on it who suffers from MS,and has a naughty son.

    as im looking at this womans wrists,she has those same swellings that i have on my wrists,that the pain management nurse said was inflamation from the tendons in the hands.

    i shouted my hubby to come look at her,and then i said to him....

    ive got a feeling that what i have is MS,but maybe..as my goverment automatically gives dissability benefit to MS sufferers,and wants to cut down on the amount of people on benefits..what if they have come up with a plan to diagnose newer MS cases,as fibromyalgia cases.thus meaning that the fibro label WILL NOT automatically allow us dissability benefit.

    and why wont my doctor,or any doctor (since me being given the fibro label)why wont any of them let me have a brain scan? isnt it a brain scan that shows up MS?

    im frustrated and im angry..this fibro ME,isnt a easy illness to live with,the brain fog is just the pitts,and i resent being labelled fibro,and sent out into the world,to my own devises.we deserve the truth.

    this illness wont go away from me,no matter how hard to try to pace/rest/eat well/sleep well/stay mobile.

    what on earth is going on?

    kind regards
    fran
  18. Kal-El

    Kal-El New Member

    I know you ask this purely as a hypothetical question, but CFS is not considered a contagious illness. Obviously, no single viral or bacterial entity has ever been identified as the cause of CFS and I seriously doubt any such entity will ever be discovered. So, in the case of CFS, no drastic measures such as quarantine should ever be necessary...especially since it is a non-fatal illness.

    The only time I would ever considered a quarantine, is when you have both a highly contagious and highly fatal illness. Not even HIV fits this description because it is mainly an STD. It would have to be an airborne infection such as the Black Plague.
  19. ravenpaige

    ravenpaige New Member

    This is, of course, purely hypothetical, and I agree that it's almost certain that no single entity will be found to be the cause of CFS. It's just plain too complicated for that. However, reading about early CFS history certainly makes one imagine several different scenarios.

    As far as quarantine, several obvious factors would have to be considered in any illness. Fatality rate would certainly be a factor, as would the method of transmittal. Certainly HIV would not qualify. It's interesting that even with the SARS epidemic a few years back, they really did not enforce any kind of quarantine, although I believe there was quarantine of hospitalized patients, which only makes sense. The prospective "bird flu" epidemic, were it ever to materialize, might justify quarantine, at least from what's been speculated, due to its currently very high fatality rate, as well as its suspected mode of transmission.

    That is very interesting about the Black Plague and I learned something new today. I had always thought that the Black Plague was transmitted solely by flea bite, but I see now that apparently there are two forms of transmission: initially, to human via flea bite, then human-to-human via airborne infection (pneumonic plague). But then, it looks like the specifics of that epidemic are also steeped in controversy.
  20. Catseye

    Catseye Member

    I think cfs is a perfect example of ethics, or lack of, in the medical profession. First of all, there are no treatments for most of us because the treatments are not profitable to the drug industry; most of them consist of nutritional supplements.

    Doesn't anybody find it strange that you don't have a test of all vitamins A-K, all minerals and amino acid levels in your body? Or any tests to assess your ability to digest and process nutrients by the stomach, liver and intestines?
    We know we need these nutrients to function, but why are they not even touched on when we talk to our doctor?

    I know most people go to the doctor for a complaint and they don't feel like changing diet and all that when they can just take a drug for something simple, but what about us? When we go to the doctor begging for ANYTHING that will alleviate our suffering our only option that is available to us is drugs. The fact that we are deficient in nutrients is not even suggested or questioned.

    I've seen at least 10 doctors who had no idea how to help my symptoms. But when I Iooked on the internet, some doctors do know and they're telling us. And except for some drugs that will treat some of the symptoms, most of what they recommend is nutritional supplements and changes in diet. So the medical profession couldn't help me, but the knowledge is there. And it's working. And I can't be some weird exception. Alot of us are using nutritional supps and they're alleviating symptoms.

    I think if word leaks out that chronic diseases can be helped by nutritional supplementation, that might mean less profit for the people selling drugs. The drug industry has been great but it is getting out of hand. Is everyone happy about the cost of medical care? I think the drug companies should allocate a little money to treating us with whatever works, not just drugs.

    It took me along time to find the right combination of supps for myself. If I knew all of this when I first got sick, I would have known what to take and saved myself years of suffering. The doctors should have known. I know it's not their fault, but whoever decides what is taught in med school is to blame. They are taught to treat us with drugs and surgery, which are highly profitable, NOT with whatever works; sometimes what works happens to be nutritional supplementation and it is not profitable enough for the drug industry. Obviously, they must have a good bit to say about what is taught in med school.

    So the answer to the question is, I would tell people what they need to do to alleviate ALL symptoms, and not just by using drugs and surgery.

    However, the drug companies, who appear to be in charge of health care, would rather we didn't figure it out. I'll bet they have their own studies going on trying to figure out how much of a dent the internet is putting in their drug sales and what to do about it. After all, I found out what to do from the internet and so have alot of other people. You can't sell drugs to people who don't go to the doctor and you don't go to the doctor for nutritional deficiencies.

    If I was a drug company, I would first make sure the news doesn't give it much coverage. Since I'm paying millions of dollars in advertising to their company for all my drug commercials, this shouldn't be difficult at all. Just a letter to the CEO of CNN, for example, saying how I would be unwilling to spend my advertising dollars with a company who is broadcasting things that may cause people to seek out alternatives to drugs for their ailments. What do you think CNN is going to do? I hope nobody here really believes that freedom of speech is literal. It costs money to say certain things. Everything you hear on the news is designed to sell you something or have faith in a certain profession (which is still selling you something). Politics is another story.

    Of course I would insist that people believe that it is not fatal. And apparently, if you believe the medical examiners, it isn't. Most cases just die of organ failure. That's what happens when you are deficient in nutrients. Have you ever seen "nutrient deficiency" or "cfs" as a cause of death? Of course not. I think they're the same thing, at least in most cases. Anybody know a medical examiner they could ask this question: do they ever check for nutrient deficiencies as a cause?

    How convenient it is that nobody knows much about nutritional supps and when people don't know, it's much easier for those in authority to deny cfs and say it's all in your head. That's what most of my doctors have said, that it doesn't exist and whatever your problem is, it's in your head. But then they don't say it's in my head the fact that I'm recovering using nutritional supps, either. Then they're stumped. I guess if I was a drug company, I'd do everything they're doing right now: protecting their big money and squashing any threat to it.

    I read that in Italy, a doctor can be charged with malpractice if he doesn't prescribe CoQ10 for a heart problem. The drug companies in the US certainly have the resources to check out CoQ10, but it obviously just isn't profitable compared to all the heart meds. And since CoQ10 is a necessary nutrient in our body, I think that it is definitely unethical that it is not even looked at.

    karen