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Dr. William Reeves dies

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

  1. currer

    currer Senior Member

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    if the CDC are in charge of the vaccine programme they will not love ME as we know that vaccines can trigger ME.
    I dont think the CDC attitude is an oversight, I think they know why they ignore us.
    Min likes this.
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    BINGO!! ;)
    give that man a cigar for hitting the nail on the head.
    Can't have a multi-billion dollar industry threatened by the facts, can we?
    if Merck alone was making a billion a year from vaccines sold to the US government...well....that's plenty of reasons ot hush it all up.


    Reeves etc = LYSENKOISM of the medical world.
    They should be excoriated and their named forever blackened in the medical/research world.
    http://en.wikipedia.org/wiki/Lysenkoism
    Folk always love bringing such up about the "enemy/other side" and ignore fact you get similar crap on "Our" side, too, because they are entirely Human problems.
    Min likes this.
  3. biophile

    biophile Places I'd rather be.

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    I agree with Cort that Reeves was not "evil" and had good intentions, but was the wrong man for the job and apparently incompetent at it despite other qualities. Although I do not condone spewing hardcore vitriol about Reeves' alleged malicious intent (nor do I agree with that assessment), I will certainly not complain about it. People are expressing their feelings about a man who they have reason to believe caused or prolonged their suffering to some degree, it is not like they are protesting outside his house and taunting his family.

    As for insiders and outsiders being disgusted by said vitriol, who really should be more disgusted? The patient/advocate community are clearly disgusted at Reeves' actions, attitude, and failures. So what is worse, a few people hating on Reeves on an online patient/advocate forum during a supposedly inappropriate time (mourning period), or the inappropriate real-world implications (harmful consequences) of Reeves' crucial reign at the CFS division of the CDC?

    An estimated 1 million patients have CFS in the USA alone. The quality of life, symptom burden, and disability, are on par with serious medical conditions and about half cannot work while about 10-25% cannot even leave their house without consequences. It costs the US economy up to $25 billion per year. This is a serious illness, we are not talking about freckles here. The CDC gave birth to the "CFS" paradigm after a ME cluster(f*ck) and are supposed to be in charge of disease control and prevention, but have been blundering their way through the rolling disaster of CFS for nearly 30 years.

    Reeves' own incompetence, regardless of good intentions, meant that progress stagnated at the CDC during a substantial proportion of that period. No surprise that people are angry and disgusted at Reeves' legacy. Again, obviously he had limited resources and cannot be singled out and blamed for everything, but Reeves was not merely a coach of the local kiddies football club whose incompetence simply lost a harmless match of sport on a Sunday with angry parents expressing themselves colourfully about the loss while packing up to go out for icecream. Society generally treats incompetence as less of an excuse as the stakes get higher. The suffering and livelihoods of millions of patients around the world were and continue to be at stake here, I would not want to be responsible for delaying progress.

    Also, even if his intentions were good towards patient population in general, I get the repeated impression that Reeves was not the easiest man to get along with, a "strong and forceful personality" and a "dictator" who acted untactfully towards opponents and even vowed to be the "last man standing" (quotations not my own words). Such people usually think they're correct and doing the right thing, driven to achieve their goals, but end up rubbing many other people the wrong way in the process. If Reeves' approach worked, this would have all been put down to being a "character", but it failed so these characteristics are less tolerated without successes and end up being just more negative baggage to his CFS legacy.
    alex3619, CJB and Min like this.
  4. Sasha

    Sasha Fine, thank you

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    This is an excellent list. Wasn't there a list of agreed goals drawn up by a group of ME organisations, including PR, a while back? The epidemiological studies and follow-up of the epidemic outbreak patients in particular would be very good additions to that list, if they're not already on it.
  5. biophile

    biophile Places I'd rather be.

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  6. Firestormm

    Firestormm Guest

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    I don't know. What does it say? The words don't show up very well my end. Is it meant to be referring to the problems with diagnosis? Was there a transcript to accompany the talk? I thought somebody mentioned the use of a hobbit on the thread but I couldn't see one on the link. There's a Tolkein theme happening here.
  7. biophile

    biophile Places I'd rather be.

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    In at least one of his lectures, Peter White finished with a photo of L. Ron. Hubbard using an e-meter on a tomato plant. Perhaps White is Hubbard and the e-meter is the cognitive behavioural model of CFS?
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Biophile
    regarding "coach"...
    recently in the US, one of the most shameful and vile events was exposed in sports:
    a paedophile had been preying on young lads for at least a decade, and what made it so bad was that the much-vaunted "head coach" knew about it and turned a blind eye because it was his best friend who was the rapist AND to make it even worse than that, because sports is such huge thing to US higher education (bizzarely), that a "cover up mode" made sure all this was ignored for many years...while more kids got abused
    Reputations and money are more important than childdren being abused (see many similar such things in other areas of course, Catholic and Moslem religion etc)
    http://www.huffingtonpost.com/2012/...rup-joe-paterno-jerry-sandusky_n_1667727.html

    Now before anyone cries about about "reeves wasn't as bad as a child abuser!"
    my point is about the nature of cover ups, how instituions work to "ignore problems"
    AND yes Reeves caused enormous suffering, you cannot exactly "weigh up and decide which is worse" but hundreds of thousands in the US alone have suffered because Reeves was, at best, incompetant.
    Doesn't matter if he was "just following orders" or if the system was broken or whatever, HE had responsibility, HE f**ked up, HE let many people suffer and even die who shouldn't have.
    How many kids with ME suffered because of him? How many were taken from parents accused wrongly of child abuse because of Reeves' view points on ME poisoning rational medicla investigation and treatment?
    He is guilty of helping cause that harm.

    We can all screw up, we can all, also, apologize and/or work on fixing it/letting others fix the problems.
    This did not occur with Reeves, he died without apologizing to the ME community he abused.
    He was not prosecuted by the medical or criminal justice systems.
    That is a bloody travesty.

    Again, see the UK, where two of the world's worst mass murderers were doctors!
    The "system" aided and abetted their crimes/covered up/didn/t investigate/let them off etc.
    How many others weren't caught? How many thousands of people have bene murdered by MDs and we never knew?
    UK has a more "standardized" medicla/police system so this aided exposing them (but our mad "class system" helped empower them and the system that covered up for them in the dman first place),
    the USA has had real problem in way doctors can (or could) avoid scrutiny by moving to another state and way many medicla crimes are covered up using "out of court settlements".
    Thus there is terribly serious problem with our medical professions as a whole

    To bring in another horror, as I've explained before, most of Stalin's victims did NOT die in the gulags or executions, but from famines he caused by his gross incompetance/stupidity, mad idealogy and also, deliberately engineered/exacerbated famines to break the will of those who resisted him.
    People readily get the "shock horror hype horror" the idiot news media report now
    they do not get the vastly larger death and destruction toll caused by non-hype events, like famines.

    The current banking and stock market bullcrap has already killed millions...how many even know that, hm? They triggered famines by messing with the prices of foods (See your shopping costs over past 5 years and imagine that to a poor person in Arica etc) and also by governmental projects etc being cancelled.
    For decades folk will die because say, essential repairs won't be carried out on civil engineering (roads, dams, levees etc) because of the financial woes.
    My point is that Reeves caused incredibly amounts of harm and most folk cannot see that, and as some seem eager ot do, to whitewash that away, is outrageous.
    The guy wasn't some psycho or pervert, no, indeed he may have been "well meaning", but as usual, incompetant, corrupt or idealogical zelaotry in some bureacrat/leader who gets in the wrong position, leads to more damn havoc than any terrorist will ever accomplish short of having a hydrogen bomb! :/

    Our systems are utterly broken, incompetant and corrupt and this is proven by the fact Reeves wasn't removed form office long long before, or in a more ideal world, enlightened to his errors.
    For instance, the US used ot have the world's tightest and arguably best civil nuclear safety regime, but recently the regulators and others have been quietly relaxing the rules...to save money and because of big business interests ability to apply leverage...madness!!


    Biophile
    Damn! the "Weasels" are TRIFFIDS!!
    Mutant crossbreeds of L Ron Hubbard and a tomato, finally it all makes sense!!
    :alien:

    [​IMG]
  9. Cort

    Cort Phoenix Rising Founder

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    CJB, Nielk and Sing like this.
  10. MDL

    MDL

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    Hi Cort--How are you? How hot is it in San Miguel?
    You asked for suggestions. Perhaps you could join this thread with the one on your column about Dr. Reeves. I'd also suggest you include the slides I posted in the CDC Resource Center. They give first-hand information about how this disease was approached by the CDC under Dr. Reeves.
  11. Sing

    Sing Senior Member

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    Silverblade, isn't there an expression in Scotland that goes, "Nothing stranger than folk.?" This means, no animal or other life form is as strange as human beings. Is that right?

    I am struck, as usual, by your imaginative power. I hope you will harness it for us. Others here have visual, metaphoric and intellectual gifts too which could be brought to bear on the public perception and the institutional views and treatment of us. There is a place for careful, reasoned scientific presentations, for legal approaches, for first person story ones, but also for imaginative ones--for film, cartoons, theatre, street theatre, political art and the like. Am thinking again of the gay community and the ways they found to communicate about their experience with AIDS.
    camas and CJB like this.
  12. Sing

    Sing Senior Member

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    Cort, this looks like a good opening for us to get our responses considered. Thanks. I know you are working on it!
  13. CJB

    CJB Senior Member

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  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    From North of England actually, and very true! :)
    "There's nowt as queer as folk"
    Sing likes this.
  15. Sing

    Sing Senior Member

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    Even better. The old granny by the fire comforting someone who has just been hurt and cannot understand such human behavior. I can hear its pronouncement, "There's nowt as queer as folk."
  16. alex3619

    alex3619 Senior Member

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    Hi SilverbladeTE, I don't use language half as colourful as yours, but I agree that the systems are broken. I am trying to understand how and why. I don't think it is corruption in most cases. I think its a case of we have given them a big stick, and then don't like it when they use it. We, the people in democracies, have let this happen. We have allowed governments to do this. In most cases I don't think we can even blame the governments (but there are exceptions) except possibly in the sense of incompetance - expedience before careful consideration. This ties in with media too. How have the media failed to keep us informed? Our civilization has no direction. We are driven by various forces and the outcome is a hodgepodge. Sometimes it works, sometimes its a disaster, and the in between is touted as working even if it isn't.

    In the sense of systemic undue influence, I agree in a rational sense. I do not know if that is correct in a legal sense. Our laws and regulations are failing us. We have let that happen. I am hoping the unfolding disaster with the UK government will wake people up, but even the global financial issues in the last few years have failed to make people properly consider what is happening.

    Bye, Alex
    Sing and barbc56 like this.
  17. taniaaust1

    taniaaust1 Senior Member

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    If the CCA is going around saying and implying that they dont ever get money from the CDC and hence to my eyes this is being deceptive in doing so if this info in this post is correct.

    If so I really hope they issue a public apology for this "mistake?" in misleading people or otherwise it will just add to the trust issues people already have with them.
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Alex
    incompetance, stupidity, nepotism, social-stratification and thus ignorance and other issues, all come ot gether for a perfect storm.

    Note the wage of the new Action for ME head, £75,000
    average UK wage is £22,000 *including* the vastly out of proportion wage of execs (average exec wage in UK is £500,000! many folk in my area make £12000 to £16000 a year)
    now, with no offence on new person in AfME, but you'll find many people sitting on numerous committees, charities etc
    the SAME people or their family and friends

    there was an article about a year ago? showing iirc, about 5000 people basiclaly run the UK, the have it stitiched up between them, vaslty out of proportion!
    nealry all such come from similar bakcground/wealth etc. Damn few have education in science.
    Wealth becomes all, hence for example you have the insanity in US of refusal, from top down, regarding the possibility of Man-made Climate Change, not because of data, but because of idealogy: it threatens short term wealth

    And so on and so on...spirals into insanity, Adam Smith even warned of such :p

    As I keep saying
    THOSE WHO CAN, DO
    THOSE WHO CAN'T, BECOME LEADERS! :p
    folk with drive, ability, concern, rarely ever want a thing to do with politics and power, because of understanding and fearing the corruption and responsibility, and wanting to get on with what it is they care about...scumbags and idiots do not care.

    WE GET THE GOVERNMENTS WE DESERVE! :(

    As I said to Currer, there are two simple answers, but folk wil not accept them until BILLIONS have perished by end of this century

    1) Democracy by Lottery.
    no more "parties" and incumbents who only care to keep the graavy train flowing.
    • You get selected ala Jury Duty, 1 term only.
    • You refuse, you get deported, you either help your country or don't deserve it, only health or serious resons for avoiding.
    • But you get cared/paid properly, and aid after end of serving at getting back to work etc.
    True representative democracy! No more gawd damn billions wasted on bullsh*t pretend democracy (2 parties is NOT democracy)
    No one with current serious mental health issue, no one with serious criminal record.
    Joe Blow is just as valid in experience and *fresh perspective and no history of corruption in that post*.

    See "the Peter Principle" if folk think that's stupid. It's not, it works.

    Most of the UK's politicians have sod all experience of a "Normal" life, nearly all come from upper middle class backgrounds, most have degrees in "politicial science", financial backgrounds (see Cameron) etc
    they are divorced form reality and have little experience of the true consequences of their actions


    2) Break the idea that "right makes wealth/might".
    NOBODY damn well deserves vastly more than anyone else.
    Huge part of current issues is the accumulation of wealth ends up divorcing those at the top form reality, and wealth becomes liek a "Black hole", they jsut want and get more and more and more...it becomes total social suicide.

    Mitt Romney: "Corporations are people, too!", um, no you assclown!
    Corporations have no reality, they are ficticious, giving them 1st Amendment rights, and more as those gits want, means they are immortal TYRANTS.
    Hitler, Stalin etc, died, corporations won't.
    Disney keeps pushing to extend copyright every time Mickey Nouse gets threeatened, and people cannot see the the danger in that...one day,because they are "immortal" corporations will make your children SLAVES. This is why they are having huge battles over "Intellectual Property", copyright etc, it's about literally owning the future and htey *know* this.
    See also the recent revelations of the trilliosn of dollars hidden in tax havens, for those who think that's "good", um, no, it means YOU pay and lose more! That's what collapsed Greece, what is collapsing the USA and UK, too. (UK tax evasion = £80 billion+ year)

    So, one solution is to limit wages tightly

    no one should ever own more than 4 times the basic wage, NO ONE is worth grealty more than anyone else.
    Raise the basic wage to be a true livable wage.
    Wages should be based on skill, risk, degrading and vital necessity, no one is more important in society than...the farmer. No food, you die.
    see how corporates in UK have ruined many farmers by forcing prices of milk etc down, below the cost of production! Far as I'm concerned that is sabotage and treason of the worst sort, UK nealry starved during each World War

    Farmers, front line military, firefighters on days they attend serious incident, undercover cops, good doctors etc deserve x4 times minimum, researchers in (personally) dangerous fields.

    Leaders in certian areas/difficulty (this includes senior politicians because that is very stressful and if paid well you have no excuse for taking bribes), researchers, civil engineers, nurses, etc x3.

    and so on.

    taking bribes in office should be the same as treason, because that's what it actually is: selling out your people. 15-30 year jail term is what it should be.

    Researchers are absolutley vital and more dman use than ye tmore peopel wasting their brain in "financial services", we've had huge brain drain of folk going towork for banks etc, helping land us in this mess
    if they had been in research, civil engineering and other truly more useful fields...?
    Banking is necessary but we've turned it into a completley vampiric monstrosity, a millstone aorund our necks

    Folk will scream and laugh against this...welI I told folk this years ago, and now..yeah they are beginning to see I was right.
    By making "Joe Exec" linked in pay to "Josie Who Cleans his Exec Toilet", the exec cannot treat Josie like sh*t anymore.

    I could give folk many items to show and explain the dangers, of what's coming, the damage/arrogance etc that has occured, but..."There are none so blind as those who WILL NOT see", everyone else, will get the idea sooner or later.


    Use US "Bill of RIghts" as start for system of civil protection (may need tweaked for digital age?)

    another idea maybe that all kids get tested for psychopathic tendencies
    systems for such already exist (forge tname of it, basiclaly for adults, shown very disturbing images, psychopaths do not respond, lack of empathy)
    refine this, made less distressing, and check all kids several times in their lives
    find such kids, make sure they are brought up in ways that do not "bring out the worst"
    Check everyone in positions of trust so they are not psychopaths.

    ANyway. that's my answer to lot of the problems, Alex :)
  19. alex3619

    alex3619 Senior Member

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    Thanks for your analysis SilverbladeTE. I more or less agree with most of it, but particularly the issue about Bills of Rights. They are the counter to bad laws, bad corporations, bad government. They describe the basic aspirations and goals of a country. They are mostly old though.

    Potential answers are one thing, implementation is another. Your slogan at the end of your posts fits the issues you will face with that agenda. Sigh.

    I am not sure I would want to limit wages as much as you suggest, I would be more interested in making everything multiples of the minimum wage or some fraction thereof, without such strict restrictions. Business exec wants a wage rise? Then they have to push for an increase in the minimum wage. That will change things. However I do think there should be a maximum wage cap. The exorbitant executive salaries that get paid ! but they still manage to play their part in economic ruin way too often. None of this addresses the issue of ownership of companies or other accumulated wealth including land. The system will always be distorted, there is no way to solve that if you value the notion of ownership. Similar issues arise with the notion of commission on sales, or performance bonuses.

    This is all off topic for this thread though, at least in part. Distortions in power structure are very much an issue with the CDC. This includes the reporting structure. I think upper management has failed, all the way to the top .. and by that I mean the big white building in Washington. However, as information rises it gets distorted. It is highly likely that those at the top do not see the same problem that doctors and researchers in the community see. It distorts their analysis. So this is in part a failure of reporting structures ... and from what I see such failure is endemic.

    If they wanted to include one psychosocial researcher in the mix to say several virologists, some exercise physiologists, and so on, then it would not be a gross distortion. By taking a controversial unproven stand and making it paramount the CDC, in recent times, has failed to address critical issues in the science. CDC leadership, including Reeves, have to be considered responsible for much of that. They could have done better, much better.

    Ideologically driven science is part of it. I wonder how much is due to issues about how leadership is selected? When millions of people's lives are on the line, mere competance is not enough. You need something more. Maybe the CDC and other organizations have simply failed to identify the qualities needed in a leader of their programs? Maybe its the Peter Principle as you said (and I have see that in action in the Public Service here in Australia)?

    I am less concerned with blaming people than fixing the system. The change in leadership might turn things around at the CDC, certainly there have been some changes, but so far there is insufficient change to be sure it is much of a difference.

    I do not think we can fix things though while the global journalist/media fiasco unfolds. Journalism is dying. We can't fix things if nobody knows whats going on. The internet is compensating in part, but not I think well enough to make a difference, at least not yet. In time I think that only publically funded broadcasters will do in depth news investigation. Big media wont for the most part. Private journalists will continue to do so I think, but have limited resources and reach. I think any discussion of where this is going has to take the media into account. That is why I am exploring the angle of a media organization to represent us and other disempowered segments in society. particularly medical related organizations.

    On option I talked over with someone yesterday (not here) was about setting up a web based media centre to be used by medical charities and organizations globally.

    I am a science geek. I hate politics. The logic of the system is driving me toward political analysis. Science is imperfect, politics is something else entirely. I hate the irrational.

    Bye, Alex
  20. Sing

    Sing Senior Member

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    For awhile in these threads after Reeves died, we focused on the psychopathology of the man, but then went onto the psychopathology of the organization, the CDC, and then have ranged wider to the pathology of the political, financial and media structures. I don't disagree with this at all, as I see it as all relevant.

    Until individuals and groups/organizations come to see that honesty is a necessity, a necessary pre-condition for intelligence, the intelligent perception of reality and the intelligent response to it, we can't get better results than we have. People are deluding themselves and each other for the sake of power, security, immunity and the like--and in so doing, undermine and sabotage the basis for their intelligent response to reality. It is vastly inefficient, counterproductive and inevitably destructive.

    We need to begin with individuals who have the courage and integrity to be honest; we need leaders of departments and organizations to model, reward and insist on honesty in their staff's work--wherever that leads, whatever happens. People will not always be "pleased" or flattered by the results, and sometimes there will be differences. All this needs to be handled openly, honestly, fairly and responsibly. It is this kind of human behavior and leadership we need for intelligent groups, organizations and systems, to produce work which enables us better to perceive and deal with reality as it is.

    Lying, cheating and stealing--or denying, people-pleasing and covering up--produces ineffective, dysfunctional, unintelligent action on every level. Liars want to be "smart" and people want to "'look smart", and people typically think they are when they are deceiving, but if they understood that they are engaging in a process of fundamental stupidity, which cannot ultimately create success, they, or we, might have the insight to correct course.
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