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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 9, 2012.

  1. Sasha

    Sasha Fine, thank you

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    Generally speaking, I'm a big fan of the principles of evidence-based medicine, intelligently applied. There's a spectacular graph from the 1990s (I think) showing the cumulative outcomes of randomised controlled trials of a particular drug on (I think) heart disease, arranged by year. It shows the date at which it became statistically clear, from the mounting evidence, that the drug was saving lives. In the graph you can see the evidence mounting and mounting year by year. The calculation of lives lost by not doing that cumulative analysis and therefore not using the drug was, if I remember, in tens of thousands. It was one of the arguments put forward to counteract each heart specialist basing treatment on their judgement, because their personal experience is based on a limited pool of patients, no control condition, and the specialist's own biases. It was a key piece of evidence in the argument for using EBM and, I think, a very persuasive one.

    The problem is that EBM is not being intelligently applied to ME. In an ideal world, where evidence was poor or missing, as is the case with ME, research would be done to test treatments and it would be good quality research with appropriate case definition. With ME, the definition of the disease has been broadened to the point of uselessness by lobbyists and medical research has been prevented by the same lobbyists. Trial evidence for treatments is scarce. In that situation, doctors should be free to use their clinical judgement, since the alternative is just to let the patient rot for decades. What we're getting is an idiot's version of EBM. It's a perversion of the original principles and it makes me sad and angry to see it.

    I think we're agreeing, Alex - I don't see your argument as anti-EBM, just anti-stupid-EBM.

    By the way, I'd like to thank everyone on this thread for keeping it civil. I'd normally avoid a political thread like the plague because it would be full of angry people shouting. Instead we're getting an informative and interesting working-through of issues. Thanks, everyone.
     
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  2. alex3619

    alex3619 Senior Member

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    Yes Sasha, my argument is indeed anti-stupid-EBM. I want EBM to focus on science and rational decision making, not accounting and management principles. I too am a fan of the idea of evidence based medicine, just not its current domination by management principles and agendas. Sure medicine has to be managed, but the science can't be thrown out in the process, or otherwise distorted. Bye, Alex
     
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  3. Waverunner

    Waverunner Senior Member

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    True. This is the key problem we face. Proof of effectiveness is responsible for more deaths than anything else in my eyes. In the end it's the patients and doctors who should decide what drugs they take. if you are not able to choose the right drug then go to a doctor or wait for government to do it for you but please leave all the other people alone. Government prevents the development of new drugs and this is the reason why we see so few innovations in drug development. Smart people and business owners are prevented from entering the field because government imposes these gigantic regulatory costs.

    When government steps in, things get expensive:

    • Education has never been more expensive than before, although government spends more and more money on it
    • Healthcare has never been more expensive although government spends more and more money on it. As soon as government steps out of healthcare and creates competition between the insurance companies and the pharmaceutical complex, we will see huge drops in cost. The only thing government should do is, to reform the jurisdiction.
    • The financial crisis was based on two government faults. 1) Creating money out of thin air and flooding the market will always lead to bubbles. 2) No bank has the incentive to lend money to a person, who cannot pay back. By making legislation that punished this behavior (Community Reinvestment Act) and giving guarantees through Fannie Mae and Freddy Mac, that these banks will not go bankrupt, the big casino was opened until the bubble burst.
    The Austrian School of Economics predicted all this crap but if people continue to think, that they will get another outcome by doing the same thing over and over again, nothing will change. Obama has no recipes for anything. Government spending will not get us out of this crisis and government regulation will not cure CFS.
     
  4. Bob

    Bob

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    These are ideological positions, aren't they? I'm not sure if these opinions are based on evidence.

    I'm not sure if I agree with your assertions, because states schools in the UK cost less to run than private schools, per student.
    Education is more expensive now, than in the past, because schools are expected to have higher standards, and better equipment, including computers, books, building standards, heating, etc., than they did in the past.

    Health care is more expensive than ever before because of the nature of health care. Healthcare has a higher inflation rate that the rest of the economy because of demographics, and because of ever-increasing technology and medical knowledge.
    The NHS is supposed to be one of the most efficient health care systems in the world, which is evidence against your assertions. I'm not saying that the NHS is necessarily the best system in the world, but it is evidence that government-run health care is efficient and inexpensive. With the NHS, there are no pumped up prices. Prices are at cost, except where services are out-sourced. The NHS is a non-profit.

    With regards to government spending, that's another ideological position.
    Either you are for it, or against it. And there are various arguments in favour and against.
    The best arguments are nuanced and recognise the complexity of the issues, the diversity of evidence, the diversity of possible systems, the possibilities, history, and the reality of life for ordinary people.
    Some people value many of the things that governments spend money on (e.g. health, education, local government, research, business investment, defence, civil infrastructure, social care, flood defences, law and order, roads, railways, pollution monitoring, refuse collection & disposal, sewage, energy policies, scientific research, medical research, housing, business regulations, etc etc. etc.), and some say that they don't value these things.

    Some say that only large-scale government investment will find treatments for CFS/ME.

    Some say that government spending and investment will indeed help a country out of recession and avoid depression. It depends on whether you subscribe to Keynesian economics or not.

    And some say that better regulation would have avoided the financial collapse.

    There are no black and white answers to any of these things, in my opinion.

    But if you look at Scandinavian countries (social democratic countries, with larger government spending, government investment in infrastructure/health/education, rule of law, protection for individuals in the law, social equality, social freedom), then I think that it would be difficult for most people to say that these are bad or unattractive places to live.

    With countries which have less government spending and less government involvement in people's lives (Mexico, India) (I can't think of any developed countries as examples), you can see how many people get severely hurt by a lack of social/legal/health protection for individuals. Some might argue that the Indian/Mexican (for example) economies are more dynamic than the Scandinavian countries, but the Scandinavian countries have highly evolved economies, and the Scandinavian economies do extremely well, and they have very high living standards, and a high degree of economic equality.

    At the end of the day, it's a personal preference, for each of us. But I think it's important to take a sophisticated and nuanced look at all the evidence before we form our opinions.

    There is an argument to be had about big government vs small government, but maybe this isn't the right place to have that discussion.
     
  5. Waverunner

    Waverunner Senior Member

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    That sums it up pretty good. You take India, Mexico as example for low government intervention. That is ridiculous and shows your ideological standpoint. Take Singapore, Hongkong or South Korea. But as you said, a political discussion will lead to nowhere. Both of us know, that the NHS does nothing to help people with CFS.

    Btw. here are some minutes of discussion about the NHS. Daniel Hannan says some very interesting things. For example, the NHS employs over 1.4 million people and most of them are administrators. That would explain why if someone has the choice to choose between an US and an UK hospital, nobody chooses the latter. However, I agree with you that healthcare should be available for severe cases (cancer etc.) but I absolutely disagree on the role of government intervention in drug development.

    www.youtube.com/watch?v=xx0ktkr9s8I
     
    ggingues likes this.
  6. Bob

    Bob

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    I did acknowledge that I couldn't think of any developed countries as examples of small government.
    We could discuss HongKong. I'm sure that there are positive and negative aspects to living there.
    But I think it would be hard to argue that Scandinavian countries are worse places to live than HongKong etc.
    I'm not sure that I'd rather live in HongKong than a Scandinavian country, for various reasons, but like I acknowledged earlier, it's all down to personal preference.

    I'm not sure if Singapore and South Korea are good examples of small government, because I believe that they invest heavily in education and broadband infrastructure and other infrastructure, etc. I might be wrong, but I thought their public/state education system, and their investment in infrastructure, are some of the reasons given for their economic success.

    The NHS does little to help CFS patients, granted, but that's primarily because there are no widely accepted treatments for CFS, (not as far as the UK establishment is concerned, anyway), and because of an unfortunate political monopoly by the psychs.
    As soon as there is a widely accepted treatment (e.g. if Rituximab were to be proven a successful treatment), it will be available free to all UK citizens.
    We do actually receive medical care, for any CFS-related issues that our doctors are prepared to try to get their heads around, but nothing specific to treat CFS.

    There is a lack of choice in the NHS, but that doesn't mean that a private medical system is our preferred option. Choice can be improved, and indeed current policies are designed to give more choice. I value the NHS a great deal, and so does everybody that I know offline (everyone in the UK uses the NHS, even if they have private insurance), but I acknowledge that it needs to be vastly improved. This won't happen easily, because funding is always a political issue.
     
  7. nanonug

    nanonug Senior Member

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    "X" is a scarce resource. All things being equal, if more money is thrown at "X", "X" will experience price inflation. In a free market, new agents would quickly offer "X". However, if "X" is artificially kept scarce by law, this won't happen.

    This is Econ 101 and, if you don't mind my saying, common sense.
     
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  8. Bob

    Bob

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    I don't have any insight into the intricacies, or details, of the specifics of the US system, so I avoid commenting on the specifics.
     
  9. Waverunner

    Waverunner Senior Member

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    This has nothing to do with the US system. If government protects big pharma companies, like it does in the US as well as in the UK, small companies are blocked from entering the market. Why? Because, as nanonug already pointed out, government requires proof of effectiveness and not proof of safety. This means that good scientists cannot enter the field because they need ridiculous huge amounts of money, to run clinical trials and get approval. It should be the patients and doctors choice only, if they want to buy a drug or not. There is no need for government to intervene. If insurance companies want proof of effectiveness, that is their right but no-one has the right to prevent scientists from developing drugs and selling them on a free market, as long as they are non addicting and not harmful. I'm allowed to buy battery acid, why am I not allowed to buy medication?
     
  10. Kina

    Kina Moderation Team Lead

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    I would like to thank all the member's for the civil discussion on this thread. Please note that the topic of the thread is ‘What the Obama/Biden victory means for the ME/CFS community’. Currently the thread has wandered away from that and has meandered into some off-topic material.

    Please keep to the topic at hand as we did post a message at the beginning of the thread to avoid discussing off-topic content. If you see where the thread has become off-topic, please don't respond by saying it is off-topic and then continue to discuss the off topic material as this makes more work for the moderation team.

    Thank you.
     
  11. Parismountain

    Parismountain Senior Member

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    I'm concerned my Medicare which had been slightly more advantageous for a provider to accept is now on the level of Medicaid and I know how difficult it is to find a good doctor if you're on Medicaid. I'm disappointed another go around and perhaps a wiser solution to health care in general has now ended.

    The people have spoken and Obamacare is here to stay.

    Time will tell which side was right on this one.
     
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  12. Parismountain

    Parismountain Senior Member

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    One more thing, with Romney losing I'll now lose my Medicare Advantage plan. I just got the paperwork last week and Blue Cross has left my market. They won't discuss why but there is a 20% reduction in the Advantage subsidy being removed every year under Obamacare and that has kicked in and I lost my plan.

    I was suppose to be able to keep my plan but oh well.
     
  13. penny

    penny Senior Member

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    Thanks for the information Valentineelynx! I did not know about this. I'm hoping to be able to keep working (and so remain covered through that) but it makes a huge difference to know that this is an option! Wonderful to feel like there's actually a plan B!
     
  14. user9876

    user9876 Senior Member

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    You need to look at switching costs, other opportunities and switching times. For example if the supply of doctors is low then new doctors don't come on line quickly because it takes time (and cost) to train them. There is also the issue of what a bright student decides to do, they could learn medicine or they could go and work in the city or ... each presents different competing opportunities.

    This is the type of area that governments step in and change the rules for example providing extra funding or tax breaks for a medical school.I seem to remember that Blairs government as well as boosting NHS spending they also increased the number of places in medical schools. We cheated as well by importing trained doctors from the third world.

    One big problem is it takes long term planning. Something both government and the private sector are very bad at. From a private industry perspective the way you look at planning can depend on how quickly you need a return on investment. So IT companies need a quick return, the oil and gas industry have longer time scales.

    Simple econ 101 analysis often ignores issues of information asymmetries since a lot of market economics fails to take this into account or deals with it using abitrage. Basically information asymmeties makes the maths hard. Hence X can be kept artificially high due to a lack of knowledge about profit opportunities.
     
  15. user9876

    user9876 Senior Member

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    The problem is it is hard for most people to assess how good a medicine is. In economics they talk about a market for lemons.Taking the quote from Wikipedia since they explain it quite well
    So since most people and doctors find it hard to assess evidence around medicine this risks creating a bad market place hence it is regulated. Regulation of such markets is quite a natural thing. For example early on in trade in england the drapers society was set up by merchants to regulate cloth sales. Some regulation is government based but often it is self regulation within the shadow of the law. If you look at criminal communities then equally you see regulation systems but outside of the shadow of the law. So the point is that where information asymetries exist such as in a drugs market some form of regulation is required but this regulation can take a variety of forms.
     
  16. Bob

    Bob

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    Another aspect of drug regulation is 'relative' safety.
    A drug might be considered relatively 'safe', but only in relation to the harm caused by the illness.
    So a drug permitted for a specific illness, might not have been permitted for another illness because of its dangerous side effects.
    For example, some cancer drugs have very severe side-effects, but they are permitted because they save lives.
    Similar side-effects would not lead to a antidepressant, for example, being given approval.

    I used to think that all drugs should be freely available to anyone who wants them, but I'm not sure any more, because of the complexity of the issues.
    I think more harm might be done than good, overall.
    I think that patients would be bamboozled by drug companies, and end up taking totally inappropriate medications, sometimes with irreversible side-effects, or dangerous/fatal drug/food interactions.

    Antibiotics are an example of a drug that it would be dangerous to make freely available, because of resistance issues, but I suppose they could be made an exception, if drugs were made freely available.

    A lot of potentially successful anti-depressants have not made it to market, and some have been withdrawn/banned, because they are too effective (i.e. they have a potential for addiction.) Partly because of this, nothing much better than Prozac has been invented since Prozac hit the market, about 30 years ago. As someone who has always been vulnerable to depression, I get annoyed about this, and would like to see the (allegedly addictive) drugs tested on a wider scale, beyond a phase I medical trial. The antidepressant situation seems like a really bad record, for a type of medication. I would have thought that they would have found something substantially more effective than Prozac, with fewer side effects, over the past 3 decades. It shows that we've still got a lot to learn about medicine.
     
  17. nanonug

    nanonug Senior Member

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    This does not answer @waverunner's question: why is it illegal to freely buy medication? This question does not have an answer in Economics.
     
  18. Mark

    Mark Acting CEO

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    I have a nasty feeling I might be technically breaking my own rule here :eek: , because the following point about economics is not really related to healthcare only, although it's not really about party politics either, and might be a useful point about the issues discussed recently on this thread about the drugs market (a subject which is clearly on topic). Anyway, if anyone thinks it's off-topic please do report it and I'm happy for it to be deleted...Kina will probably do a better job of assessing this one objectively than I can...:D

    It's this point about information asymmetries that has interested me.

    If I have it right, it is a response to an earlier post referring to 'economics 101', which was a straightforward argument about how economics (allegedly) work. That argument has an obvious appeal I think, because it sounds like it's just common sense, and similar arguments to that one are often used to justify political standpoints regarding the role of the 'free market'. I guess arguments rather like that are used on all political sides, but I do seem to hear them quite often as simple arguments for 'free market' economics (what I would think of as 'economic liberalism'). But I think there may be a more fundamental question to ask about those arguments, before we even get to issues of 'information asymmetries'.

    A friend of mine was doing a PhD in this in relation to social policy, and he explained the basic flaw as lying in the economic concept of 'rational actors'. In all economic models, there have to be a set of assumptions, which seem to most often be assumptions about human behavior. This is basically necessary to turn everything into maths, and hence into relatively simple and measurable conclusions. Some of these assumptions may be valid because they even out; others may miss really important factors.

    The assumption which, based on my limited understanding of economics, seems like it may be the single most prevalent problem, is the assumption that individual humans always act 'rationally', and purely on the basis of their own individual (economic) interest. They always take the best economic option for them, selfishly - or so it's assumed in some models (though not generally stated explicitly). Thus, for example, if a shop opens up which is cheaper for the same goods, everyone will go to that shop. Or if there are better wages in the next town, then people will move there.

    However, this assumption is clearly not borne out by our experience. Although it's perhaps meant only as an approximation (and when put in its proper context, it's a fair enough argument), and although the force that these financial factors create is real and lies in the direction that the theories suggest, we actually know that in real life we often carry on shopping at the more expensive shop through inertia, through habit, because it's on a convenient or pleasant route, because we like the shopkeeper or have built an emotional attachment or routine around going there, or because we just haven't thought much about it. We stay in the town where we live because our friends are there, and we feel attached to the place, we want to stay there, and that's more important to us than the money we might be able to make somewhere. So in fact our economic decisions, as individuals, are actually very 'sub-optimal' indeed. They aren't "rational" decisions, and they aren't just dictated by the financial factors, but also (and perhaps actually more powerfully) by human factors.

    Of course the argument might then run that, on average, these factors will tend to work in this way, and that seems like it should be true. However, it's important to note that these forces will always act only as a tendency, rather than a rule - they will always work significantly less than 100% and therefore they don't average out to 100% - and significantly there are also going to be 'human' factors which are also systematic and consistent which are pulling in other directions. Sometimes those other factors may even be more powerful than the financial ones.

    Thus the market forces are indeed a factor in the direction that their theory suggests, but they are far from the whole picture, and some of the arguments that are advanced about economics are really only one part of the story. I do think it gets potentially quite dangerous when it's assumed that such arguments are the whole truth about a particular question, and they are simply true and obvious, because I really don't think they're as accurate as many people tend to assume. And indeed, if you assume or demand that they are the whole story, you can sometimes end up effectively (and unintentionally) going to war against those human factors, and putting numbers above people.

    As regards the healthcare market (to try to at least pretend to stay on topic :)) I think the factor that is dominant for many people - and which has certainly been almost universally accepted in th UK ever since the NHS was created after the Second World War - is the universal benefit we experience here from the security of having an excellent (though of course never perfect) safety net; a guarantee that if (or rather when) we get sick or disabled, we will be protected and cared for rather than exposed to the 'free market' and potentially discarded as 'uneconomic units'.

    Whether it fits into an idealised economic model or not, there are very, very few people in the UK who would now wish to lose the benefits of what is, in effect, a national insurance scheme that provides at least a basic level (and actually a very good level) of healthcare for everyone. Even amongst most of our free marketeers, many of whom would wish to see more of a role for privatisation of the health system and some form of expansion of private healthcare insurance, I don't think I've ever heard anyone argue for a completely free market in terms of the abolition of this 'national healthcare insurance scheme', and certainly no serious politician in the UK would suggest abolishing the NHS.

    So, just as an impression from the outside, the mandatory element of Obamacare sounds to me like a somewhat business-oriented and free-market-friendly implementation of something that all of us over here take for granted: a basic level of societal healthcare protection 'from cradle to grave'. I do get the impression that, in the end, compromise was necessary and it didn't go as far as it was originally intended to go, and perhaps those compromises may be its undoing. But I suspect there's a very real chance that in time it may be seen as an absolute watershed in American politics, because that safety net is the sort of thing that, once you've come to appreciate its value, you are always grateful for. I really hope it works out that way.

    Anyway, the general economic point, that the free market isn't the only reality of economics and isn't the only important factor in politics, is really just an observation that is hopefully of interest...if it is indeed off-topic, my apologies...
     
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  19. user9876

    user9876 Senior Member

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    I believe that economists sometimes talk of semi rational actors although I've never looked at this work. The other thing is they try to monitize other factors, for example, social consquences to them of performing a task. In thinking about an agent they will also talk of different behaviours (such as people being risk seeking or risk adverse) leading to different results.

    There are often issues around the accuracy of the model. For example one economic model I know looks at migration that is whether to move to another town. They include switching costs (both to move and to return) as well as uncertainty around the wages in the new town. So that model allows you to take acount of some of these different factors but it quickly gets complex.

    With the going back to a shop example there is the idea of a single transaction vs a repeated set of transactions. Often expressed in terms of game theory where there is a single or repeated game. They lead to different results.

    Hence the model matters but they are tools to help you think about the decision space rather than predictions of reality. One of the problems I've had described to me was that the models can end up over simplifying a situation to keep the maths tractable. This can lead to situations where those using the models forget about these assumptions and missing elements.
    Understanding the models is important. One of the efforts of a lot of (good) regulation is to try to get markets to work by removing things like information asymmetries. So for example making insider trading illegal or ensuring companies publish accurate accounts so that the stocks can be traded fairly.

    I expect that there are a number of public goods arguments around the health market. That is the need for the country to maintain a healthy workforce hence a shared product. This would be a different way of looking at the market place. Different economic models can help us understand the way different systems run and some of the ways they go wrong. Politics should then allow us to choose which system from all the different trade offs and assumptions that we prefer.
     
  20. Waverunner

    Waverunner Senior Member

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    Adverse Selection is a problem of principal-agent-theory but not in this case in the real world. I understand that buying new drugs can be a risk, but the answer is very simple. If you are not sure about a new drug, don't buy it! If a doctor is not sure about a drug, he shouldn't prescribe it! However, this doesn't give anyone the right, to make drugs illegal for other persons.

    Pharma companies can use signalling in order to lower the doubts. The market will come up with an efficient solution to show if their drugs are safe or not. It is in their best interest to show that their drugs are safe. How is it, that costs drop everywhere for everything except drugs, food and commodities (which suffer from inflated currencies)? The reason is, that companies come up with more efficient ways to produce things. Is this possible in the pharma market? No it isn't. Why? Because the FDA imposes expensive regulation, that makes it impossible to lower the cost of drugs. As long as you are required to test drugs through gigantic trials and inhibit competition, the price for drugs will not drop and the variety will be low.

    So who will buy drugs in a free market? Either the person who is most intelligent or very foolish or the person who is is most ill and where the illness makes it worth to take a risk because no other help is available. In either case, it's the choice of a free human being! Everyone has the right to talk that person out of his/her choice but making it illegal to sell drugs without FDA approval and prescription leads exactly to the bad market, we have today.
     
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