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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Rituximab, Genentech and Tony Fauci, at CFS Central

Discussion in 'Rituximab: News and Research' started by Mindy Kitei, Oct 28, 2011.

  1. Mindy Kitei

    Mindy Kitei

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    Genentech tells CFS Central that it won't do an ME study on its drug rituximab.

    Mindy Kitei
    CFS Central
    http://www.cfscentral.com
     
  2. kurt

    kurt Senior Member

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    Genentech has no financial incentive to conduct an ME/CFS study for RTX use, their RTX patents are expiring in the next few years, probably before a serious study would be concluded. At least one company is already working on a generic, so that might explain the lack of interest by Genentech/Roche. Clinical trials by drug/biologic makers are not humanitarian ventures, they are an investment with a profit motive. Personally I think they might profit from RTX in ME/CFS, but that would be years and years from now, and given the complexity of ME/CFS and the risks involved in a major drug trial, I can understand their position, from a pure business point of view anyway.
     
  3. Desdinova

    Desdinova Senior Member

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    This is shear stupidity on that companies part. But then again who can blame them when the world wild dominate view of ME/CFS is one that says it's just one or even multiple mental disorders. Then take into account that whomever replied from the drug company more then likely knows next to nothing about ME/CFS and it's history. They more then likely think that this is an extremely rare (mental) disorder.

    To change that we would have to launch a campaign which emphasizes the long term financial benefits this move could mean for them. Point out who the World Health Organization is. Point out that they classify ME as a neurological disorder and for how long they have done so. Point out that many of the world governments health bodies insist that CFS and ME are one and the same. And the estimated number of those infected.

    Point out to them that they aren't putting money into a new drug but an existing one (ie they aren't developing (reinventing the wheel) something from scratch). And that by doing this it's no different then spending money on an add campaign. After all those are in a sense investments right and, that they should look at doing the studies as an investment.

    And by doing so you establish yourself as one of the first companies to market to this patient group. Most importantly that by doing so they are not proving or calming this to be a permanent cure. They are not claiming that ME/CFS is mental, viral, autoimmune or anything else until the scientific facts have been vetted. Your only claiming whether it helps alleviate the symptoms, which ones and for how long.
     
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    I have found generic rituximab listed as low as $2850 for the two doses on a Canadian website. It's understandable if Genentech chooses not to fund a trial.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Capitalism doesn't work too well when it gets to non-luxury goods and services, do it? :p
     
    currer and Tony Mach like this.
  6. Battery Muncher

    Battery Muncher Senior Member

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    Quite. You'd have thought that contributing to medical science would be incentive enough. Clearly not.
     
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    If you live in a world where 0.1% of the population, your "group", owns up to 90% of the wealth,who dine on $1,000 meals, own several mansions, hire entire resorts for corproate retreats...
    well, the Lumpen Mass of the rest of Humanity doesn't count for much, does it?
     
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What system works better? And what is your evidence?

    GG
     
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Oh, I'm not syaing there's a one specific system that's been "tried, tested and approved on a global scale", no
    merely that what we do have is a lead torpedo on the way down to the Abyss, taking our civilization with it, so we better bail out and come up with something better afore we become shark bait.
    Cannot be fixed from within, they've made sure of that.
    *points to all the recent economic issues, including growing organized push to disenfranchise the "money draining" disabled*
    ;)
     
  10. Tony Mach

    Tony Mach Show me the evidence.

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    Upper Palatinate, Bavaria
    Oh, so someone should build and test a better system first (against the 1% who are deeply invested against any such change) and then present such a better system on a silver plate? Well in that case, you are fully correct to assert that there isn't a better system. Enjoy having ME/CFS in capitalism.
     
  11. Battery Muncher

    Battery Muncher Senior Member

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    Well said Tony Mach.

    In any case, a brief look towards Scandinavian social democracy, circa 1970ish-80ish, suggests that there is plenty of room for progress.
     
  12. currer

    currer Senior Member

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    As the UK has moved politically to the right in the last thirty years we have seen an underlying shift in values.

    In my past in the UK, I can remember areas of human endeavour, such as the arts, medicine, education and scientific research being recognised as worth pursuing in their own right.
    It was understood among the political classes that they had value in themselves, which was not connected to monetary value.

    We have since seen a political philosophy grow up which has overwhelmingly substituted monetary values for all these other values, so that now everything is judged by a financial measure, however inappropriate.

    This is destructive of valid areas of human interests, aspirations, culture and endeavour, where the goal is not financial. In fact it is damaging to human beings themselves.
    Rather than leading to growth and prosperity, this change has blocked, restricted and damaged us culturally and socially.

    Isn't healing the sick worth doing in its own right?
    Should there be a financial motive to medicine?
    Cant a society be content with making money in other areas where it is more appropriate and then spending some of the accumulated wealth on medical care?

    If you will only accept financial gain as a motive in medicine you reduce your patients to monetary units, not human beings. In some instances then, it would be more to society's interests not to treat useless or unprofitable patients, or to euthanase them.

    Are we there yet?
     
    ixchelkali likes this.
  13. SilverbladeTE

    SilverbladeTE Senior Member

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    Currer
    as I've said, we've been "going down the rabbit hole..."

    recent talk by Those In Power about the cost of treating those with cancer, diabetes etc show the problem
    then the scum have the arrogance o blame the victims
    well laddie-da, who was it who punted all that cheap, sugary food at the Public?
    All that cheap alcohol and tobacco who's tax revenue the government lapped up, hm?

    Also, the UK's government made another step to eradicate the disabled, they want to remove the right of the disbaled to Legal Aid for when they try to fight for disability allowance,
    ie, if you get thrown off welfare by those scumbags at ATOS, you won't be able to afford to appeal against this!
    and note, 70% of appeals have won because ATOS is either grossly incompetant, or deliberately designed to deny the disable welfare...

    http://www.bbc.co.uk/news/uk-politics-15512827

    AREBIT MACHT FREI
    That is an Evil that will not die easily :/

    (and NO, "die" does not a call to violence or any such)
     
  14. Mya Symons

    Mya Symons Mya Symons

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    E-mail address and Office address

    Mindy, do you have his e-mail address and/or the address of his office? Do you think it would help to get as many people as possible to e-mail him?
     

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