Discussion in 'General ME/CFS News' started by Sushi, Aug 3, 2012.
I agree, though I suspect it would cause this thread to go silent.
@Dainty -- You always make me smile.
GO to CAA facebook page and read what s. vernon has to say.....her view, i disagree and reserve the right to disagree loudly and strongly.
yes, Obama and F. Collins (and Unger) are currently responsible for the terrible way the CDC is handling our disease. I have written countless letters to them (including MichelleObama since I have a son the same age as her daughter...i thought i cld appeal to her sympathy as a mother) expressing this point of view.....have you...or do you just want to take time to do a little Obama bashing?
Unfortunately still nothing has been done by our govt to help us....we are just left to rot in our beds. Perhaps you are not as sick as I am and stilll have enough quality of life left to be magnaminous to our enemies....i no longer have the time or inclination for such niceties......my life is slowly sliipping away from me...and if there is an oppty to raise a stink about how we are being treated I will take it.
the fact that Bill Reeves has just died appears to be a perfect oppty to me....i am not asking you to join me in this fight for recognition and my demand that the history of Bill Reeves treatment of ME patients be recorded truthfully.....a scam and crime against humanity. His family should be ashamed of his professional record in this arena. I know if my husband, father, brother or uncle were responsible for the suffering of so many i would be ashamed....and apologize to the world for his behavior.
my character is i am pissed off that my life has been lost to this inisidious disease and the man who was chartered with investigating it....pushed it into a dark corner and threw a dusty rug over it.....tha's my character...is yours better because you are polite and refuse to speak ill of the man responsible for this suffering. if that is is your beleif, then so be it.
i know what my character is...it is to fight for my life and to take any oppty i can to shine light on our suffering and the terrible way we were treated by BILL REEVES.....yes it was he who was responsible....so now that he is being talked about because of his death it is my duty to remind ppl what a terrible job he did in managing the research, containment and treatment of ME!!!!!!
The only way Im sad about him dying is that Im sad that now he will never see how wrong he was about ME/CFS and wont ever be able to be held accountable for his actions and all the suffering he's caused us.
I really hope that Dr Wessely dont go and die too as I want someone who has caused us so much pain and suffering to end up paying in some way for the crimes against humanity as far as how ME/CFS has been treated goes.
Dr Reeves, dead or alive.. will be in history as one of the major gov hands who caused so much trauma for millions with a dreadful illness. (Dr Wessely one day will carry a morbid history with him too. When this illness is one day understood. he will too be known to be someone who wrongly influenced world views and caused much suffering).
Im also sad about how low spiritually obviously damaged, the treatment of this illness has dropped me in regards to me not being sad about someone dying.
I feel okay saying that as his family wouldnt be here reading ME/CFS forums.. or if they were.. they'd be stupid to be doing that as of cause they'd be some aweful responses here due to the suffering he's put us throu.
When Hitler died.. was everyone expected not to express how they felt about it?? in fear of causing his family pain? No America and much of the rest of the world rejoiced. At least the ME/CFS communities arent throwing parties over Dr Reeves death.
Having to be silent about how we feel about him dying is ridulous.. the fact that a very spiritual person such as I can be so horrible in regards to this.. shows just how much suffering and damage he has caused.
Its not ME/CFS societies business to tell us how we should be expressing our feelings and we arent children either so shouldnt be having to be told what we shouldnt or shouldnt say, why is the society treating us like children rather then adults in this regards.
Im quite upset he's died as now he will never get to see that he was wrong and never feel remorse for what he's done (I need to see someone punished to balance the unfairness and damage done to me/us... I dont want them just dying and getting away with it).
His death has just caused some of us more pain as it means he has got away with it .....and the ME/CFS societies need to understand that some of us need to express our feelings about it, rather then advocating for "suffering in silence" and putting his families pain (which I doubt they will even read these posts).. over the pain of those in the ME/CFS communities who are now upset he got away with what he's caused without punishment and may need to be expressing how they feel
Once again.. the socieity thou I know it "meant well" with its words.. it dont feel like its representing us or even relating to many within the ME/CFS comminity, by saying what it did..... the society is obviously more worried about his family and how they feel rather then how those with ME/CFS feel over this news.
Wessely and Reeves, their policies and ones who have kept putting out biased wrong views to the benefits of whatever their own goals were, be it for financial reasons, for status or whatever it was, all the while of ignoring the very sick they were supposed to help.. are responsible for hundreds of ME/CFS deaths..be it throu ME complications or suicides.
Ones like Bill Reeves and their policies which have affected things worldwide are responsible for my near death. Over my near suicide with me landing in the ICU for a week as I almost died. They are also responsible for me landing in jail for almost a month over the near suicide... over things like cause I couldnt get the care I needed, due to ME/CFS not being viewed as truely serious illness eg pushing things like it can be helped by GET and CBT so I couldnt get the home support I needed for the normal life stuff as no doctor believe how sick I was.
Dr Bill Reeves trivialising policies is at least partly responsible for the doctors over even in my country of Aust. who wouldnt believe how sick I was. (my doctor actually looked up the CDC site for info on CFS in front of me!!). So partly responsible for all the crap Ive been throu. His polices caused so many deaths.
So he's died.. he's got off lightly.
did you then have good things to say about bin laden and quadaffi when they died......did you ignore their crimes so as not to offend their families after these criminals died?
if you did not then your stmt is hypocritical......if you did then you do know how to turn the other cheek....that works for you...not for me.
I'm pissed off, too, about the impact this illness has had on my life and that of my daughter. I don't consider that my "character". It's definitely my feeling, though.
I feel angry, but it has not made my character unpleasant, hateful, hostile, and cruel, and I doubt it has done that you your character either. What you feel is one thing, what you choose to do with those feelings is another. It is what you choose to do with the hand you've been dealt that demonstrates your character, IMO.
I think you are possibly reading more into my post than is actually there.
You are reading far beyond what Levi said. He did not "have good things to say" about Reeves. He just suggested a little common decency for the moment.
No one is suggesting that we never criticize Reeves and his tenure at the CDC. We have the entire future for that.
Levi was in no way hypocritical.
My concern is not whether or not to turn the other cheek, and it is certainly not whether or whether not to criticize someone for harming a large number of people through their public role. My concern is that callous jokes made following someone's death could easily be used as a stick to beat us with and further undermine our legitimacy. Just as articles about death threats to British researchers undermine us and further reinforce the incorrect belief that we are crazy, so too could callous jokes about Reeves be grabbed by someone wishing to make us the enemy. We cannot afford that if we hope for our advocacy efforts to bring change. It is because I am so angry about the loss of my life that I express the plea for people not to put callous jokes on this forum, because jokes could easily wind up in a more visible public forum and make it even more likely that we will never see a cure, that I will never see the health I once had. Criticizing the man does not concern me much, because he certainly didn't help us, but callous jokes could easily hurt us all.
All good points, but even as a hypothetical matter of style there is no point in shooting ducks in a barrel, so to speak. Even with a ubiquitously thick "brain fog" on, it would be possible to be subtle enough to make your point and still remain respectful to the man's friends and family.
There's nothing wrong with feeling angry and bitter but what you chose to do with these feelings is important and shows a person's character. We can chose to hold on to the anger, making ourselves embittered to the point that it hurts our mental and physical health or we can chose to use it as impetus to be proactive and improve things as much as humanly possible.
How can we demand respect and compassion , when we ourselves can't give it?
“Any man's death diminishes me, because I am involved in Mankind; And therefore never send to know for whom the bell tolls; it tolls for thee.”
It is true that how many of us feel about his death could give the minds of the public wrong perceptions about the people we are but the society saying what they did.. isnt going to stop any of us so affected by how we have been treated to the point of becoming bitter and twisted in some regards, from expressing views.
All it takes is just "one" person to post something dreadful..and the media can pick it up and twist it however they like to make things sound even worst. The society cant stop that no matter how it tried..
All the societies comment has done, by trying to stop us from expressing how we really feel, is made many of us feel like they arent understanding us, those who have been the most harmed by Reeves.
Obama and Reeves arent at all comparable... Obama has never headed up a CFS section of a health department..nor is he actually responsible for making any CFS polices. With Reeves with are talking about someone directly responsible for the terrible treatment of so many. There was no excuse for Reeves to be unknowable about the seriousness of this illness and for the poor polices put out.
lol dainty. Your post made me smile too.
Some people use jokes as a way of dealing with their pain and to lighten themselves or others (I have to admit I found a couple of things joked on funny and it helped to pick me up a bit). Everyone has different ways of dealing with pain. If they want to find something to beat us with and have the media bring us down with, they will find it anyway.
If Reeves has passed away, I'm wondering why there hasn't been a mention of his passing in any of the news outlets...curious? After all he was the head of the CDC's CFS research program at one time...just saying.
What's to say - anyone foolish enough to be taken in by SW and his psyches into the "psychosocial" was/is a numbskull whoever.
Mindy Kitei has written a blog:
I hope Hillary Johnson writes about this. She has her blog off-line at least at present; hopefully that's only temporary. I think she would have to be long dead to not want to write about this.
umm ... Hillary?
You are entitled to feel anything you like about someone's death. These are personal feelings.
No-one can be criticised here for their personal feelings.
It is only a crime if you do something to hasten or cause or incite someone's death. That we have not done.
While I can sympathize with his family and their loss (assuming they felt his passing as a loss), my primary response to the death of Bill Reeves is relief and hope. As Max Planck said, "A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."
Bill Reeves, I raise a glass on the day of your passing. Here's to new scientific truth and the hope that it may bringing to millions of ME patients around the world. One central enemy of a new truth is no longer an obstacle for a generation of patients.
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