Discussion in 'General ME/CFS News' started by Sushi, Aug 3, 2012.
With all the damage his policies did to people with CFS, I can't imagine anyone ill with this disease would feel too sad about this.
A piece by Jennie Spotila ending with:
"He has often been viewed as disdainful of the suffering of people with CFS; we should not make the same mistake and be disdainful of the pain his family and friends must feel at his passing."
It's not a "mistake" to be honest about how you feel. Shaming people into pretending that they SHOULD feel something that they don't, on the other hand, is a bit manipulative and abusive.... especially when the people being shamed are sick with a debilitating disease that Reeves had the power to dismiss as a psychological condition.
IMO his ignorance and lack of compassion has earned him the disdain he deserves.
You make many valid points and those who have held the power over our illness certainly have much to be accountable for. I personally didn't feel that Jennie was attempting to shame others into feeling something that they can't possibly be expected to feel - merely attempting to take the 'high' road in what might easily become an onslaught of distasteful remarks.
It is definitely not a mistake to be honest about how you feel (although I for one wish Reeves had not been quite so honest about how he felt about XMRV and other things). Nor did I intend to shame/manipulate/abuse anyone into pretending to feel something they don't.
Reeves left a powerful legacy, and it is not a good one in my view. Nor do I think enough has been done at CDC to repair the damage he left behind. I criticize his views and actions, but it's not my place to criticize him as a human being. That's all I was trying to say in my blog post.
On this we do agree, though I would personally go with stronger adjectives that the ones you chose: appalling, dreadful, atrocious, unconscionable, and cruel.
What kind of human being allows millions of people to suffer (and far too many of them to waste away and die) from a debilitating neuro-immune disease, and uses his power to do nothing to help them? Actions speak louder than words, and non-actions speak loudest of all.
That's my eulogy. I'm done now.
Thanks for conveying this news. I feel a sense of relief, if only with a symbolic cause. Out with the erroneous perspective he held and promoted, in with the science and our future!
Has anyone checked? Think he's just malingering. Get up, Reeves! Stop laying about when there's work to do. Someone get him some CBT, I hear it works wonders for low energy conditions.
Does anyone know if he died of an xmrv-related illness?
I would echo the sentiment expressed in Jennie's quote, copied above.
However undeserved, we face a massive credibility gap in the minds of the public, many of whom have been led to believe we are either everyday moaners exemplified or suffer from some form of complex somatoform disorder. Given that gap, we cannot afford to be unnecessarily callous toward our enemies (however emotionally satisfying it may be), lest our antipathy be interpreted in a public forum as unfounded hatred and thereby reinforce the stereotypes that already dog us. If we hope one day that cooler heads will prevail with respect to biomedical research for our illness, we must learn to be cool ourselves (despite the horrible destruction of our quality of life by this long ignored disease) and to channel our energy in productive ways. It will be difficult to take that high road, but meeting callousness with callousness not only does us no favors, but may erode the foundations of the nascent progress long-time advocates are beginning to see.
I am mildly sad for his family and friends, and the man himself. I am also encouraged for the ME and CFS communities. It is entirely possible to hold both views.
Let us be civil. Our civility only reinforces the power and righteousness of our demands. Lack of civility weakens us.
If you need to express your anger at Reeves and others like him, please do so in private, rather than in this very public forum, where your expressions of contempt harm our mutual cause. We face enough challenges as it is.
“It is difficult to get a man to understand something, when his salary depends on his not understanding it.” - Upton Sinclair
Let's just say I hope someone writes a book about ME/CFS in the future and that history judges these people in the way they deserve to be judged.
I'm not angry but neither do I feel the need to be sad for him, his family, or his friends. I don't know them; they don't know me.
A man who caused millions of us to lose our lives through his deceipt, lies and misappropraition of funds dies; and we are told how to react to his death.....please give me a break. This man has caused untold suffering if we are happy to see he has left this earth (and even more appropriate if his death is somehow related to an ME factor); then i feel relief that he is dead....perhaps now there will be some real scientific and medical research done on this disease.....and at a minimum we no longer have to share the earth with a man who is responsible for so much of our suffering.
this is my feeling; you can disagree but PLEASE DO NOT tell me how to feel or what i should or should not say abt this death.
The CFAA's view sickens me; yet they are free to share their opinion; it just further proves to ppl with this disease where they stand in their support of severely ill ppl who suffer with ME.
Did ACT UP or other AIDS patient support groups laud Ron Reagan when he died after he so thoroughly mishandled that disease.....were AIDS patients told how to act and speak after he died....no, I think not!!!!!!
The truth of Reeves treatment of ME and patients should never ever be forgotton!!!!!!
We have no idea what his family is feeling right now. I don't like these attempts to tell us what we should be allowed to express in a public forum. My opinion is that it does harm for us to be false. Those who judge us badly will do so regardless of how we act. They are acting in an unfair and illogical way - not us.
Of course, condolences to friends and family for their loss. Personally, I believe it is ubiquitous bad form to speak ill of the recently demised. Looks like his employer the CDC will need to invest some resources in order to update his bio:
So we should hold Obama accountable for the lack of progress on our illness now? (Re: Reagan)
Also, I think Jen is speaking on her behalf, not CAAs.
I think we shold follow the old adage, "if you do not have anything nice to say, then don't say anything."
Nana-ism: "Just because you have the right to do (or say) something, it doesn't mean it's the right thing to do (or say)."
I am appalled by Reeves' professional attitudes and activities. I still think, like Levi, that it's bad form to bash the man publicly so soon after his demise. He probably has family that is in acute pain at the moment from the loss of Reeves, the man -- their friend, or husband, or father. We have the rest of our lives to show what Reeves, the CDC official, has done to our live; we can choose to give those grieving the man a little time to adjust without immediately screaming our anger publicly.
That's my opinion on decent human behavior under the circumstances. Other people will have other opinions they will express. That's life in the free world. We have the right to choose what we say publicly. We don't all have to like what others choose to say or not say.
I don't think anyone here is telling anyone else what they may or may not say. But what you choose to say (or not say) tells your listeners something about your character. I think that's what some people in this thread are trying to remind us.
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