The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Chronic fatigue syndrome page on RationalWiki.org

Discussion in 'General ME/CFS Discussion' started by Nicolas the french guy, May 17, 2017.

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  1. Nicolas the french guy

    Nicolas the french guy

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    Hi.

    I was browsing RationalWiki.org when I stumbled upon this aberration :
    http://rationalwiki.org/wiki/Chronic_fatigue_syndrome

    English is not my first language so I would have trouble writing something coherent, but I think it would be a good idea to "refresh" this page.
     
  2. Chriswolf

    Chriswolf Senior Member

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    "Rationalwiki" is a dump, remember this is what progressives believe, these are the same ardent supporters of socialized healthcare, which by magical coincidence also supports the notion of CFS being of psychological etiology, gee I wonder why that is?

    This right here: The government conveniently opts for the cheapest, least liability inducing treatment while tacitly admitting it likely does nothing to actually ameliorate symptoms. Disgusting.

    Only a capitalist "shitlord" free market will provide adequate treatment for CFS/ME as has been demonstrated many times now in our own forums.

    It does not at all surprise me that these pieces of garbage would shill for the psychogenic hypothesis of CFS, especially when there is proof that CBT has a negligible impact on overall wellness.

    I would not be where I am today had I listened to mainstream doctors who advocate the garbage they're spewing on that page.

    CBT didn't give me back my wellbeing, cytomel and cortef did, coincidentally two drugs that would make most mainstream doctor's eyes go as wide as saucers if you had expressed an interest in as a treatment pathway.
     
    Last edited: May 17, 2017
  3. Snow Leopard

    Snow Leopard Hibernating

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    The article looks as if it was written by someone who was very bitter about how they were treated by the "One Click Group"

    As for "rational wiki", almost no one actually reads it.
     
    Last edited: May 17, 2017
  4. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I don't know anything about them but I would ignore it. This wiki seem extremely fringe and comes across as far right winged.

    There's nothing wrong with science but they use scientific evidence to dismiss other types of evidence and claim that scientific evidence is the only evidence we should believe. Dismissing the fact that it is very easy to skew science to fit ones agenda.

    That's very dangerous. I also see this happen in the vegan vs meat eater community.

    Plus that page is clearly using outdated evidence to prove their point. Whether intentional or not. I'd just ignore it if I wore you. It would be a waste of valuable time trying to understand.
     
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  5. Chriswolf

    Chriswolf Senior Member

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    It's actually not, it's a far left outfit, as is typical of the left trying to co-opt terms such as "rational" or "skeptic" as a matter of political posturing. Consider it the leftwing equivalent of conservapedia.

    The left hasn't been very good on the whole "science" thing as of the last 10 years, especially the last 5.

    Basically their idea of science is flat out lysenkoism, which entails

    -predefine a narrative based on a desired outcome

    -memoryhole all contradictory data

    -smear and politically assassinate anyone who dissents

    There's a reason why places where socialized healthcare has the strongest influence tends to have the worst treatment of difficult to define disorders, especially ones that might require drugs that the bureaucracy has preemptively decided aren't worth a perceived "risk".

    The fact that in the very article the term "palliative" is alluded to should tell you all you need to know.
     
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  6. alex3619

    alex3619 Senior Member

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    What, do you mean PACE? ;) The same has been done by large corporations and by parallel action from large corporations, particularly with the chemical industries. There are public relations firms for hire that specialize in this. Its also the stock in trade of many politicians.

    The problem is not usually with the science. The problem is that transferring science to action in society means it becomes political, and once scientific information becomes political the arguments go from rational (in theory, if not in practice all the time) to rhetorical, designed to persuade.
     
  7. Cheesus

    Cheesus Senior Member

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    I have yet to come across an adequate treatment, so I don't know what you're referring to here. Where and how has this been demonstrated? The free market has done nothing to fund ME research.
     
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  8. Chriswolf

    Chriswolf Senior Member

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    If you read the article it mentions how that one particular doctor's conclusions heavily informed NHS policy.

    So I was mentioning ACCESS to treatment, which under a socialized system, is basically a death knell for anyone seeking treatment if the prevailing bureaucracy opts to mitigate liability and cost by essentially going full-lysenkoism on your particular disorder to serve their policy-based ends.

    There is another person in this forum who recently had to move beyond the NHS to seek treatment for this specific reason, I can also attest to the fact that this mentality is very well established in Canadian healthcare, where free market options are generally speaking illegal.

    I happened to find a loophole by which I pay money to a physician because they do not operate a standard practice.

    I also had to sign an indemnity form informing me that the provincial government wherein I live actively opposes (yet for some reason cannot stop) this doctor from doing what he's doing (thank goodness).

    It's as close to a free market solution as we have here and it took me years to find it. It seems to be an immutable law that whenever you have socialized systems they inevitably seek to disabuse people of their right to choose and seek help based on how it serves the governing entity, NOT the patient.

    To those people who are ideological socialists who do suffer CFS/ME and wish to find treatment from within a socialized system.

    Your cognitive dissonance will cost you, it's a pipe dream, the only thing that will help you is a system where there is an incentive to help patients and those do not exist within systems where the bottom line concern is avoiding liability and reducing "costs".

    Anyone with CFS/ME fighting against "two-tier" healthcare or a private option, is actively doing harm to their chances of ever finding effective treatment.
     
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  9. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Although this website may have started out as left winged, what I have read on there does not fit in with the current far left-winged, progressive agendas in 2017. This fits 2017s far right agendas perfectly.

    In this article in particular the way they are referring to CFS is very backwards and dated. It's not progressive at all the the science they have used is bias at best . It goes completely against the left wing agenda to protect those who they consider the most vulnerable in society which would include people with disabilities.

    Although a lot of people say that the left are currently harm the rights of people, they wouldn't intentionally do so. That's me referring to the people on the frontline, such as this website. How the left unintentionally harm communities is a different topic altogether.


    Either way this website comes across as radical and fringe at best.

    I just don't believe that this is the sort of site that young progressives flock to when they want a reference to something.
     
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  10. Cheesus

    Cheesus Senior Member

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    That isn't the case here in the UK.
     
  11. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    For those who can afford it. Millions of Americans are without adequate medical/health coverage.
    No one in socialised medicine goes bankrupt because of medical bills.

    Both systems have their weaknesses as is usual in all things.
    There is no perfect system. And I don't consider capitalism to be the dominant system anymore -- @alex3619 makes a very good point -- corporations have taken over where the gov't has been told to butt out -- Anybody need an Epipen?
     
  12. Skycloud

    Skycloud Senior Member

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    I agree completely.
    My son needs an Epipen, lucky for him he's in a socialised health care system.

    re the rationalwiki page - left-wing (I don't think so) or right-wing s/he is just a troll.
     
  13. alex3619

    alex3619 Senior Member

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    Its becoming the case in the USA and just about everywhere. HMOs and other insurers often deny treatment - private organizations limiting care are even more common than government organizations limiting care. In the UK we have NICE. If its not recommended by them then good luck getting treatment. You can, notably by taking a trip to the continent, but that becomes difficult and costly if you are sick.

    Here in Australia we have freedom of choice of doctors, and a mix of universal and private health care. Both are constrained by rules from government watch dogs. You can go outside those rules, but its cash only, as insurance will not cover it. So even when it appears you have choice, it basically comes down to having money. In theory pensioners etc. can get free health care here, and almost free medication, but in practice this is broken.

    The only other option is medical tourism. Sadly you cannot be sure of quality of care if you do that, and if something goes wrong you might run out of options fast.
     
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  14. Chriswolf

    Chriswolf Senior Member

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    If you think begging the government to undertake that burden where in every country where socialized healthcare exists they've specifically tried to bury patients who suffer from such disorders, I don't know what to tell you.

    The only way I was ever going to receive treatment, and I knew this, was by going out of my way to find people who were willing to take money in exchange for effective treatments. That's just the way the world works, if you welcome the government to manage your healthcare system, they will "risk manage" your ability to seek treatment right out along with everything else.
     
  15. Chriswolf

    Chriswolf Senior Member

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    Then why is it that people on this very forum have had to circumvent the authority of the NHS to receive treatment elsewhere? If that weren't the case we would see repeated examples of how NHS as a government run service had a standard of treatment for CFS patients far and beyond what is the standard elsewhere.

    That very article indicated that NHS policy was centered around CFS being of psychogenic etiology and that CBT was their preferred method of treatment.

    Your personal experience or your ideological bias does not change either of these facts as they are concurrent with how socialized systems prefer to deal with CFS in general.
     
    Last edited: May 18, 2017
  16. Chriswolf

    Chriswolf Senior Member

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    In the case of such disorders as CFS it will always come down to whether or not you have money, it does not make financial sense for government mandated (and paid) healthcare to not mitigate risk and cost using every cold calculating method they can find. That means people like us will always be fucked over, I hate to put it that way, but that's how it is. We're always triaged because paranoid speculators see us as an easy target to mitigate cost and risk. That is a feature endemic to socialized systems.

    We're isolated and each case is often mediated by different factors, that ambiguity alone serves as the pretext for marginalization.

    It's pure delusion to assume otherwise, the only consistent solution will be providers who are willing to accept compensation for effective treatment, people can cry about it all they want but when you live in a place where the government has all but killed off this ability, you'd jump at it and you would do whatever you had to in order to pay for it.

    That's simply not true, maybe in Australia but in every other part of the world, especially the U.S many private healthcare providers would go out of business if they didn't offer services that HMO approved providers didn't.

    The private sector exists because of the inadequacies of the public or "insurer approved" sector.

    To rationalize otherwise is pure delusion, it's supply and demand.
     
    Last edited: May 18, 2017
  17. Chriswolf

    Chriswolf Senior Member

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    Rationalwiki is an ideologically left-wing website, anything that does not comport with their political bias does not get accepted.

    Considering the uniform opposition by socialized healthcare systems to CFS being anything other than psychogenic in nature, it makes perfect sense why it would.

    You being disabused of agency in treating CFS is also why you're likely here, because it is a natural causality that socialized systems do just that, they reduce your ability to choose treatment pathways, especially if they can reduce real or in our case imagined risk to their best interests.

    Also the reason why epipen is so expensive is because of...

    You guessed it. Government overreach.

    https://mises.org/blog/lack-epipen-competitors-fdas-fault
     
    Last edited: May 18, 2017
  18. JayS

    JayS Senior Member

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    Yeah, it's cherry-picked, sure. But, and I'm not ideological about this...that page and that site are not right-wing, I assure you. I disagree with @Chriswolf in the sense that I wouldn't use a link from libertarian/Austrian econ sites to make my point, but that's his opinion which is fine & in my view not worth discussing further--but that's because I'm not interested in political discussion here. However, yeah, Rationalwiki is absolutely left-wing.

    The scorn directed at "CFS" is nonpartisan: the right wing view is that we're a bunch of lazy slackers who just need a good kick in the ass, while the left-wing view is that we're a bunch of hypochondriacs who are the very reason single-payer healthcare systems struggle, being that we consume substantial resources without contributing much of anything. We don't get better, we go to the doctor a lot, we're resistant to treatment options, so the only thing that makes sense is for those who can manage our wastebasket to deal with us...and that's psychiatrists, CBT, & GET. Both views are wrong to the point of being vile, but people tend to project their own biases, especially in times as intense as the past couple of years. Which is to say, more than at any time in recent memory. So I've seen patients I know to be conservative savage the Affordable Care Act (which I'm no fan of) while not taking into account anything that was positive about it, while I've seen those on the Left talk about how single-payer is what we really need, in spite of the rather obvious straits ME patients find themselves in in countries with...single-payer health care.

    I wouldn't agree that no-one reads RationalWiki, but I suppose it is best left alone, I've thought of joining that page to edit it but I don't really have the strength to fight with those people. Someone did make some adjustments a year and a half ago when David Tuller started writing about PACE and James Coyne got involved. Take a look at the history of the page, it was far worse after it had first appeared, as it said absolutely nothing about what CFS is, and had solely to do with the constant horrors imposed on esteemed researchers like Simon Wessely by lunatic patients. It read like something you'd see on Bad Science (which itself is populated by people who are either lesser-known disciples of what we call the Wessely School, or are colleagues of people who are a part of it), and the longer they have a page that bad up, the more it reflects on them. At some point I expect they'll have to change it. It's an embarrassment, a sham, and living proof what scientists and especially 'skeptics' think of us. And when people demand proof of how we're mistreated or thought of poorly, pages like that are pretty good evidence. But the political bent of that bunch is simply not right-wing. Read the page on that site about Donald Trump, and then the page on Hillary Clinton. Those and the CFS article are all consistent in their political leanings.
     
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  19. user9876

    user9876 Senior Member

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    The NHS is generally a very good healthcare system for the things that it knows how to treat. But ME and other illnesses that are not understood are not well thought of. I think that often has to do more with doctors attitudes than the way healthcare is paid for. In the UK you can go to private doctors for alternatives. Although you often end up with the same doctors and same attitudes just in a slightly different setting.
     
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  20. alex3619

    alex3619 Senior Member

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    Supply and demand is only an heuristic, not a law. Health insurers all have limits and limitations built into their policies. This is most often seen in limits on psychiatric care. There are whole categories of diseases that are also not typically covered, including CFS.
     
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