1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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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. nanonug

    nanonug Senior Member

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    This kind of argument ("for the good of the nation") led in Europe to some very nasty ideologies both on the left and on the right that ended with millions of people dead.

    I would never think of using the dismal science (Economics) as a way to choose a political system.
     
    monobear likes this.
  2. Bob

    Bob

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    I disagree with this far more than the free market for drugs.
    Rigorous testing of drugs is the only way to test treatments for efficacy.
    If we didn't have this system, then they'd still be selling snake venom as a cure for all sorts of things.

    The PACE Trial is a good example of how medical trials work.
    The psychiatrists tell us that CBT and GET treat ME, because ME is a psychiatric illness (or 'perpetuated' by psychiatric factors.)
    They expected 60% of patients to respond to treatment with CBT and GET.
    But the PACE Trial found that only 13% responded to treatment, at best (using their own figures, and their questionable methodology), and it found that the treatments were not clinically useful when measured using objective tests.
    So, using the more rigorous standards of a medical trial, we have proof that ME is not a psychiatric illness (which we already know, but at least they can't legitimately promote it as one now.)
    The same goes for medicines. It's only by expensive and rigorous trials that we can actually know what works and what doesn't.

    I have seen an alternative system proposed for drug trials.
    In this system, instead of the pharma companies paying for expensive trials, the government would take the risk and pay for medical trials. In return the government would take a cut of the profits for the successful products, so it would be cost-neutral.
    This would lower the risk for individual companies, possibly increase innovation and competition, allow for more exploratory drug trials, and it would be cost-neutral for the government.
    It might also ensure more honest trial data, as the trials would be run independently of the company intending to market the drugs.
    The government could also insist that all the data published, and that more than one company can manufacture and market the product.
    Companies could opt in or out of this system.
    Anyway, it's just a model that I've seen proposed. It seemed like quite a good idea to explore.
     
  3. Waverunner

    Waverunner Senior Member

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    Hi Bob,

    your PACE example is nice but there are several points of criticism. In a free market, studies like the PACE trial are redundant. Why? Because we, the people with CFS, always knew that we were physically ill. I don't need government to tell me something, that I already knew.

    This whole approach of government intervention creates so many problems, I don't even know where to start. What if the PACE trial came to another conclusion (something that happened in many other studies), what if it said that CFS is a mental illness and CBT is the optimal treatment? You would have to look for mistakes in the study, spend lots of time and fight endless battles against psychologists. FOR WHAT? Even if you win this battle you gained nothing, nada, niente! You are still the same ill person. The only difference, you could now nail a certificate to the wall, that says: "I'm ill.". What did the PACE trial change? Is there one single working treatment for CFS, that was developed because of the PACE trail? No, there isn't. Is government developing treatments for CFS now? No, it isn't. To sum things up, the PACE trial used up time and money, that should have been spent on treatment. Psychologists can think whatever they want, I don't need their opinion, unless of course you depend on them in a government run healthcare system.

    In a free market, people with CFS seek help, they create demand and this creates supply. The problem is not, that psychologists claim, that you are mentally ill, they can talk as much as they want (I really don't care), the problem is when you need proof, that you are ill, because otherwise you won't get any treatment even if you could pay for it. Doctors will specialize in CFS and scientists will develop treatments, because without government, they can afford it. No patient is forced to take any of these drugs but sooner than later, the working treatments will prevail. The working treatments for CFS probably will not come from the CFS field but from all kinds of fields (IBS, autism, cancer, infectious diseases etc.). Regarding the snake oil argument, you already can buy snake oil today. If a company says that its pills cure cancer and if this is fraud, the company should be punished severely, but this has nothing to do with a free market. Fraud is fraud and needs to be punished.
     
  4. Bob

    Bob

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    Yes, the reason why we, in the UK, need to prove that CFS/ME is not a psychiatric illness, is because the NHS and government research-funding bodies, do not seriously treat CFS/ME as a biomedical illness. This leaves us vulnerable to being accused of being malingers, or neurotic, etc. And the NHS is not a free market, so we can't easily shop around for alternative treatments, or sympathetic doctors. Although, we can chose alternative local doctors, and we are free to go private.

    You make a good case for a free market in health care, however, does the current US system work better?
    If CFS is treated as a psychiatric illness for insurance purposes, and patients with long-term CFS can have their insurance withdrawn, and patients with existing illnesses can't get insurance, then do you think it's a better system, if some, or many (I don't know the stats), people are unable to access health care at all?
    (That's a question, not a statement.)

    When a widely accepted biomedical treatment is available for ME, then it will be available to all of us on the NHS.

    My 'snake venom' argument was a response to your argument that medicine should not be tested in rigorous medical trials (or that's what I interpreted you to say).

    You said:
    "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."

    I was pointing out that if medicine is not regulated or rigorously tested, then you can't possibly know whether snake venom cures cancer of not, so you cannot know if someone is being fraudulent or not.

    Now you seem to be arguing that there should be some regulation?
     
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  5. Waverunner

    Waverunner Senior Member

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    The US system is not better and the US system has not much to do with a free market either. As long as the FDA exists and as long as the current prescription laws exist, there will be no free market.

    But lets suppose we have a free market and some company comes up and says that their pill cures cancer. In this case some district attorney should show up, should demand some scientific proof and if not given, should send these people to jail. This should be true for all other cases where companies make wrong claims.

    But also the customer should learn, that he/she has to take responsibility for him/herself. You cannot believe what everyone tells you and if you are not sure, you should visit a doctor.
     
    ggingues likes this.
  6. alex3619

    alex3619 Senior Member

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    Hi Bob, do you have any links to this proposal? Thanks, Alex
     
  7. alex3619

    alex3619 Senior Member

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    Hi Waverunner, this is also regulation. The point is that you are shifting regulation around, not eliminating it. Its an out of my portfolio solution - SEP, someone elses problem. However, someone always pays. The question is who pays, when, and how: thats what different schemes influence. We need the level and type of regulation that provides optimum results to society. Obviously a free market is desirable, but equally some level of regulation is desirable. Its not an either or debate, its a how-much-of-one-or-the-other-debate.

    Let me tell you where I think full society-wide deregulation and rampant free market goes: the wild west. Don't like your doctor? Get your gun. Don't like your insurer? Get your gun. Don't like the lawman? Get your gun. Don't like your spouse ... Under a total freedom policy its OK for someone to do this but its OK for others to stop them. The same goes for companies and other business. The wild west all over again, though perhaps the wild west is not the best example given that a lot of what I think about it is probably myth.

    You see examples of this in countries like Sumalia. Its called anarchy. How many are really free in a failed anarchic state? You get out of it by creating regulations and enforcing them.

    The opposite is also bad. A totally regulated society ... look at the old Soviet Union or Nazi Germany. Total enforced regulation ... but who would want to live there? China is an interesting case and still a work in progress. Their politics is highly regulated, but they have a fairly deregulated market. In fact, its so deregulated its a problem for the USA. Many manufacturers infringe copyright and patents for example. Thats a free market ... why have patents? Why have copyright? Thats regulation, be gone with ye! Yet they have executed people for putting poison in baby food. Obviously there is some regulation, but its often after the fact. They are also not effectively addressing major problems like pollution.

    There is an old Celtic tradition ... everything is legal if you can get away with it.

    Society needs balance. Regulations, laws etc. are part of that. So are taxes. Politics is about trying to get the balance right given thousands of competing interests.

    Let me address the district attorney idea specifically. In a regulated market violations are relatively rare. You need a few district attorneys. In an unregulated market violations will be much more common. You don't need a few district attorneys, you need an army of them, support personel, investigators, law enforcement, judges, courtrooms, prisons and more regulations regarding seizing property to pay debt. The balance has shifted from one part of society to another, but someone still has to pay for all this. In the current funding provisions this might mean more taxes not less ... and so the companies pay yet again. Is that a free market?

    There are reasons why my politics tends to be centrist. Extremes often get things wrong, though of course a centrist policy can be wrong too if the balance is wrong. By wrong I don't mean absolute wrong either, I mean the results are often to the detriment of society.

    Bye, Alex
     
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  8. Bob

    Bob

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    No, sorry Alex. It was a discussion that I came across ages ago. I can't remember if I read it, heard it, or saw it on TV. And I can't remember if it was in relation to the UK or the USA. So, I can't help you much really. I seem to remember them discussing how the current system stagnates research because pharma companies have got to commit so many millions before they test a drug, so they're not prepared to take many chances with experimental or doubtful drugs.
     
  9. alex3619

    alex3619 Senior Member

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    Its OK Bob, I am interested in this topic and will be discussing it at some point. I am aware of several proposals and have one of my own, though I don't have links handy either. Its all buried in a whole lot of papers that I have that I will be using for my book. Some of it might appear in my next two planned blogs. Bye, Alex
     
    Bob likes this.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    he morning after Tuesday’s vote, there is one thing every commentator agreed on. The election of Barack Obama guaranteed that his signature piece of legislation—health reform—can now go forward. Republicans are powerless to stop it.

    Yet there is something all these commentators are overlooking. There are six major flaws in ObamaCare. They are so serious that the Democrats are going to have to perform major surgery on the legislation in the next few years, even if all the Republicans do is stand by and twiddle their thumbs.

    Here is a brief overview.

    ObamaCare is not paid for. At least it’s not paid for in any politically realistic way. As is by now well known, the legislation will lower Medicare spending over the next 10 years by $716 billion in order to fund health insurance for young people. This reduction will primarily consist of lower payments to physicians, hospitals and other providers—reductions that are so severe that they will seriously impair access to care for senior citizens.

    In the last two Medicare Trustees reports, the Office of the Medicare Actuaries has predicted that these cuts will force one in seven hospitals out of the Medicare system in the next eight years. Payments to doctors under Medicare will fall below Medicaid levels in the very near future and will fall continuously behind Medicaid in the years ahead. From a financial point of view, seniors will be less desirable patients to doctors than welfare mothers. Harvard health economist Joe Newhouse envisions that seniors may have to seek care in the same places that now cater to Medicaid beneficiaries: at community health centers and in the emergency rooms of safety net hospitals.

    During the election campaign, Barack Obama claimed that his administration had found $716 billion of “savings” and Democrats generally claimed that the money would come out of the pockets of doctors, hospitals and insurance companies, with no bad effects on seniors. In fact, no “savings” have been found and seniors will indeed be affected by low reimbursement rates—just as low-income patients must deal today with the fact that almost one in three doctors is not taking any new Medicaid patients.

    But if the current crop of politicians is afraid to admit that they have taken something away from senior voters, what do you think future politicians are going to do when real pain starts setting in? The betting in Washington is that the cuts will be restored. That will mean that ObamaCare will hugely add to deficit spending, indefinitely into the future.

    ObamaCare promises what it cannot deliver. To most politicians, acquiring health insurance means that people will be able to get medical care that the uninsured are not now getting. Yet in order for the country as a whole to get more medical care, there must be more doctors and nurses and hospital personnel—something that ObamaCare does not create.

    Adding to the problem is that the law will require all of us to have access to a long list of preventive services without deductible or copayment. Economists at Duke University calculated that if every American actually got all of the recommended screenings and tests, the average primary care physician would have to spend 7 ½ hours of every working day doing nothing else but giving preventive care to mainly healthy patients!

    What we will be facing is a huge increase in the demand for care, but no change in supply. As the waiting times grow, providers will tend to see those patients first whose insurance pays the highest fees. Those in plans that pay below market will be pushed to the rear of the lines. These will be the elderly and the disabled on Medicare, poor people on Medicaid and (if the Massachusetts model is followed) the newly insured in subsidized plans in the health insurance exchanges. In other words, access to care is likely to diminish for our most vulnerable populations.

    cont'd

    http://www.independent.org/newsroom/article.asp?id=3495
     
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  11. Waverunner

    Waverunner Senior Member

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    Hi Alex,

    to make things clear, I'm for a libertarian state. This has nothing to do with anarchy. If you think, that you can shoot someone because you have a gun and don't like that other persons attitude, well, have fun in prison because this is where the state would put you.
     
    ggingues likes this.
  12. SilverbladeTE

    SilverbladeTE Senior Member

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    Myabe if we put the insurance company execs in front of juries for mass murder (see UNUM), destroy the corporations utterly and use their misbegotten money, slap down hard on military spending which is used for idiot wars of aggression, use that money to *offer free education to doctors/nurses* and then bring in true UHC but with small efficient, and tightly responsible local units and central government only for settign standards and laws of the UHC system not interfere with it for political/arrogant crap (as occurs in UK)...you'd get something of true value

    but, NO! long as the kleptocrats keep conning folk into thinking that health care is a thing for the strong, for the dynamic, the successful and they deserve more because they do more etc etc...well, you get the society you deserve.
    When you worship at the altar of Mammon, you shouldn't expect any return but in Mammon's own coin ;)
    This includes extermination of the sick and disabled which means, *us*, hence, as noted, the isnurance ocmpanies who have been our MAIN ENEMIES.
    Keep supporting your own executioner if you like, your choice of course.
    You CANNOT have health as "for profit" and have it repsonsible and for the benefit of all citizens, this means it is either UHC, or for the elite.
    We waste billions of idiiot wars and bombs....for what? more veterans sucmbag politicians salute at gravesides for easy re-election fodder, yet ignore the surviving veterans who get their legs, faces and genitals blown off because they are just a cash drain/not photogenic.
    YAAAAY war on terror YAAAAY war on drugs..and what have they achieved? made the world a dman sight worse.
    Will the Republicans dela with that? no.
    Because they have no damn CLUE what goes on outside US borders, in fact, they have no clue what oridnary US citizens are actually liek (47%?)
    Not that Democrats are "super" either, system's a gross mess, duopoly is not democracy and corporations literally, openly can buy candidates now....

    thus Obamacare may far from the best, it may be crappy but it's better than the big pile of nothing.
    oh and please epxose the woes of the UK system if wish to comapre, be very happy to epxlain some of it to ya ;)
    thing is, at least we're slowly exposing the villainy. US investigative and unbiased media died a long time ago, bouht and paid for by a handful of corproations.
    thus, say, rongdoing sin Obamacarehave much less chance of ever being exposed, as well as any other form of worng doing.
    not Liberal media bias, it's corrupt, nepotistic propaganda blanket dropped on entire populace, they dion't give a dman Left or Right.
    can't have corporation A exposing that Corporation B's products are dangerous because Corporation A has 20% shares in Corporation B...unless they plan a merger on more faovruable terms and use expose's as means to reduce share prices!
    thats' the reality.
    Sigh, man does it suck :(
     
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  13. alex3619

    alex3619 Senior Member

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    Hi Waverunner, which implies a highly regulated society, with laws and enforcement. Those regulations would also cover business. Vigilance is the price of liberty, a quote I hear often. That implies people empowered to watch and to act. Responsibility and freedom, together. To get such a society you need a lot of laws and regulations, plus the institutions to enforce them. Then you need taxes to pay for it all, though some of that can come from targeted fees. If you want freedom you can't get away from regulation. The issue is not whether to regulate, but where, when and how much.

    Bye, Alex
     
    penny likes this.
  14. AFCFS

    AFCFS Senior Member

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    No, but there is such a thing as affordable healthcare. To me the entire system is currently based on greed and it is connected and spills over into so many other aspects of society that it is like a tumor that needs to be removed.
    That is because they are nestled in a capitalistic system that has extended itself beyond he pale of morality and lives only for profit. Greed once again.
    Maybe it will just collapse on itself. People in a society seem to make the mistake in thinking that the society they are in is destined to outlive all others. We are a nation of not even 250 years old and showing signs of a downward spiral. IMO, as a nation we started to decline shortly after WW II, around 1950 - and just have not hit bottom yet.
    Show me a doctor that cannot put food on his family's table, and I will show you a doctor who may have CFS.
     
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  15. Bob

    Bob

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    I've found the evidence that I was relying on, when I said that the NHS is one of the most efficient health care services in the world. This article is definitely worth a read... It has some very interesting stats.

    http://www.guardian.co.uk/society/2011/aug/07/nhs-among-most-efficient-health-services

     
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