Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dr. William Reeves dies

Discussion in 'General ME/CFS News' started by Sushi, Aug 3, 2012.

  1. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi Sing, I fully agree. However its the nature of politics to use deceit, misdirection, empty rhetoric and a whole lot of other methods to achieve goals. One of the aims is to get people to like you to achieve your goals. This can easily compromise rational responses. So I would call what you are asking for an ideal state of affairs, but I don't see how to achieve it in the current world. Maybe it can be done, I am sure it can be done in parts and if only part of the system can be fixed that has to be worth something.

    In theory what you are describing is what should happen in a democracy. However this presumes everyone has the public wellbeing at heart, and everyone is fully informed on the issues.

    What we can do however is to set examples. While we are looked at very negatively by many (as an ME or CFS community) its possible to reach rational people. To do that it helps enormously to behave rationally. Emotional rhetoric is good for reaching large numbers of people, but I think we need a good number of medical professionals on our side for real progress. Many of those will respond rationally if presented with the facts - not all, but I hope enough.

    The Science Media Centre has made itself the one stop shop for media releases. We should not use their methods, but we should counter it with a media centre of our own. Journalism is getting lazy, not because journalists are failing but because media management is cutting costs. If the SMC continues to release the kind of press releases it has been, and we instead issue detailed releases with opportunities to follow up with accurate research, we might capture some of the journalist population. This is still all very vague and woolly for me, I am still figuring stuff out, but one way to gain credibility is to adhere to careful and factual statements, if we can. I wonder if other advocacy organizations for things like ME, autism or fibro would be interested? I think this is worth another thread, I might start one in a few days, but in the meantime if anyone wants to start it off in a new thread please do so.

    Bye, Alex
    Sing likes this.
  2. Dreambirdie

    Dreambirdie work in progress

    N. California
    This is the ideal, to have honest and courageous people in the positions of leadership, especially where it concerns public health. But unfortunately people drawn to positions of power are hardly ever honest, courageous, or integral. (The truly great leaders like Aung Sun Suu Ki, Nelson Mandela, and Vaclav Havel of this world are a very rare breed!) All too often what we end up with instead are arrogant egomaniacs and narcissists, who have more concern for maintaining their image and their position, than they have for genuinely being of service to the ones they are supposed to be advocating for.

    That's why we need so badly need a PATIENT BASED ADVOCACY GROUP, to override the power trips of these government officials, to keep them honest by repeatedly exposing the truth that they work so damn hard to distort and bury, and to hold them to be accountable for every single one of their actions. The CAA has done a pathetic job at this, primarily because their loyalty to the CDC (and Suzanne Vernon's enmeshed relationship with the ghost of her "remarkable" ex-boss William Reeves) overrides her commitment to the CFS patient community. Until that changes, and at this point it seems highly unlikely that it ever will, we are in effect screwed.
    xrayspex and Sing like this.
  3. Dreambirdie

    Dreambirdie work in progress

    N. California
  4. Alex
    problem is when wealth is greatly disparate, it ends up causign false "social classes", caste systems, divorcement form each other etc.
    "Bob is as good as his master".
    Inherited wealth amplifies this enormously, so over time you get the "class" system of the UK, example of ills this causes my areas, the lower vs middle class places can have a 20+ year difference in life expectancies!

    Eventually wealth snowballs into such huge sums, they can, and have bribed, warped society etc
    the tax evasion issue is partially deliberately engineered by politicians/civil servants tkaing bribes/influence to put in the "loopholes" that are used ot evade tax.

    Inherited and exhorbitant wealth are in effect, addictive, lethal poisons.
    French and Russian aristocrats got mass murdered for damn good reason, not saying it was "justice", but their arrogance, wealth, divorcement from reality, screwed not only their many victims, but held back and wrecked their entire societies, and that ended up being flung back at them in horrible violence.
    Russia was stuck in the 1500's style.
    See also China and how "Confuscianism" helped hold their society back terribly.

    Revolutions and change come, and most revolutions ended up degenerating into horrors, but the ones at the top get it in the neck. So their greed is suicidal in long term.
    Those revolutions failed because unlike the UK and others, they didn't have long periods of "Enlgihtenment" and sufficient stable Middle Class to desire peaceful Democracy
    And our "revolutions" also had brutality, see Oliver Cromwell, King John etc
    But we learned to dislike/avoid such, where as the Continent ended up suffering The Thirty Years War, Robspierre's "terror" etc

    Russia actually had Democratists at time of the Revolution, but no one, not Russians, not British/French would support 'em! Democracy was a totally foreign idea, sadly.

    Todays CEOs = French aristocrats of 1700s ;)
  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi SilverbladeTE, inheritance taxes can "solve" the accumulated wealth problem - but its not clear the solution is not worse than the problem. If you can't take it with you, then the spending will be highly distorted. Why accumulate capital? I don't know that this is a good thing either.

    I agree with you on revolutions. What is supposed to happen in a democracy is that we have non-violent ways of overthrowing government and ensuring reform. The rich and the powerful no longer have to face public execution as a result. Its a step forward, but civilization is a work in progress. This does not mean there will not be movements for drastic social change - look at the Tea Party in the US.

    Anyone heard of the Toolmaker Koan? (Hint: work of fiction and serious at the same time.)

    Bye, Alex
  6. currer

    currer Senior Member

    The problem now with our democracies is that they have evolved to prevent overthrow of one political viewpoint.
    And yes, this is not politically healthy.
  7. Alex
    Damn, years since I read that book!
    "iridium helmets" ;)

    It's not merely on death not at all, being born into better lifestyle brings automatic higher chances of good health/position etc, which is mad because it means others lose out...and wealth accumulates into fewer and fewer hands...and you get fewer and fewer chances for folk to be engineers, researchers, whatever.
    For this, see USA's "zenith" of the 1950s to today, see wages, labour unions etc (yes 1950s were rotten with racism etc, I reffer to chances of Average Person getting ahead, living full life etc)
    Disparate income is the quintessential drive behind social disfunction and eventual, collapse

    Alex, Currer
    a major point of Western representative democracy is in effect, it's supposed to be a recurring series of "mini revolutions", which should keep things "fresh"
    Alas, yes, eventually, it gets stiffled and grinds to a halt, because all the slothful, weak-livered, stupid, greedy, venal or worse buttholes want to make it a nice unchanging "graavy train" for them no matter the damage it does to the nation :/

    People in groups, nearly always, suck. The "group" becomes king, the survival and domiance of the group becomes all
    So, the political party, or religion, whatever, it's goals, ethos etc, gets left in the dust.
    See political "gerrymandering" of voting boundaries as a toxic example of this.

    I maybe very Left wing, but my area's Left wing local government has been in office for so long it's a disgusting graavy trian of corrupt no users and complete arseholes :(
    Not all are bad but ye gods, the "good ones" do not speak out to drive the scum out.
    It's so bad the scum have been seen taking bribes in public, nice big fat envelopes for new window contracts in council housing schemes put right in their hands...blerg!
  8. Whit

    Whit Senior Member

    Bay Area
    I think it would be good in this situation to separate the person from the actions of that person.

    You can condemn, with honesty, the actions of a person while they are alive or after they have died without making it so personal to condemn the person.

    I think some people in this thread are afraid that we are condemning the person, and find that distasteful and disrespectful, and that is right.
    And other people here think that we can't try so hard to be nice that we stay silent about the terrible actions of this man that have caused millions of people to suffer endless decades. Which is also right. The last thing we want to do is say "oh, it's fine" and let organizations or the media erase history after his death.

    We must make sure his actions are rememered along with the incredible pain and loss of life they caused, while we make sure to keep a respectful image of CFS patients by not insulting the man personally. Because it really isn't personal. I could give a shit about Reeves, I didn't even know him. I wish his family well as much as I do any other family who has lost a loved one. But I will not forget what Reeves has done and will not be silent about any of those things. He deserves to be remembered for the terrible things he has done, but more importantly we deserve those actions to be remembered.

    Because without acknowledging the problems in the past, we can never change.
    SOC and alex3619 like this.

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