Discussion in 'General ME/CFS News' started by Sushi, Aug 3, 2012.
I think a number of people here are suffering from Stockholm Syndrome.
The person I would nominate to write the history of CFS starting from after Osler's Web is Rebecca Skloot. She won numerous awards for the bestselling non-fiction book "The Immortal Life of Henrietta Lacks" - about medical research, ethics, and the impact of it on one family - and her father, Floyd Skloot, has CFS.
I've written her via her website but not surprised I didn't get an answer given the amount of mail she probably gets and her agents or others screening that mail. I also don't want to make the automatic assumption that she would be interested -- she might not be or she could be but it hits too close to home. However, if anyone knows her personally, ask her please.
[Immortal Life...: http://en.wikipedia.org/wiki/The_Immortal_Life_of_Henrietta_Lacks]
All of us here, I am sure, have lost loved ones in death; have grieved, may still be grieving.
If this were a member of my family, I would be calling a press conference inside a month to issue a public apology, regardless of my own grief. The things we refer to in this thread were unconscionable acts. I am sorry there are those who call this thread hateful. I have found it cathartic, informative, and healing, and have come back already to re-read again. Hatred has nothing to do with our processing our own grief over our own substantial losses. If anything, I feel more hopeful and empowered as our community moves ahead.
After I post this, I am texting the site address to my former husband. Maybe he will begin to see the extent of the pain he caused by belittling and undermining my symptoms, or representing me to others as "depressed" to cover his own actions. I mean him no harm, either. It has been seven years since we separated, so I am glad I finally feel strong enough to give him information... for me, not for him.
He (my former spouse) is just one person in the picture... as others have noted, family members, doctors, media articles read by friends, etc. all have played a role in keeping this muted. We can all count the ways all too well... all you need is exercise; oh, we KNOW it is only anxiety and depression; all you need is calcium and magnesium... see? there is nothing wrong with you, you only THINK you are sick... the pain isn't real... what's that Latin phrase? ad nauseum?
He's probably not going out with a bang eg any big news of his passing... as it is easy just from the posts on this thread, to see if any big thing was made of his passing that many ME people would be then talking about all this guy is responsible for all the deaths and mistreatment. .. and Im sure any who admired him wouldnt want this kind of public backlash, so I think his passing wouldnt be made any big thing out of.
Catharsis has its place.
Most of the time, that place is not public.
His family one would think would probably be unaware of his crime against humanity thou no doubt would be aware of how disliked he was by the ME/CFS communities but i doubt they would truely understand the real reason of the whys
.. Why should a persons family be blamed have to suffer for something another has done? They are probably innocents in all this.
So we will now never get a public appology from the likes to Reeves..but the day will come where the CDC probably will have to be giving us one!! (im going to now hold onto that).
I fear the coming times some as not only have we got ones like Reeves aging and dying off... many of our ME experts (familiar with ME outbreaks) are aging too and of the same generation so will be passing too. So we will be also loosing these who have been around before ME was watered down and made to be stuff it wasnt, loosing the ones out there who know more about ME then anyone else.
This factor of all the old specialists going, really is in my attention due to 3 of the CFS specialists I used to see in past 5 years, have now retired or passed away and no younger ones have come along to fill the gaps which has left things in an even worst situation.
So yeah.. we may loose the ones who pushed the biased CFS views.. but we will be loosing a lot who were supporting us too. And I know the next following generation in the biased views are already out there and going strong.
It would be seen as publically distasteful if the likes of them wrote something bad on Reeves AT THIS TIME. (and most of us certainly dont want to see something good written about it as far as ME/CFS goes just cause he's died).
This thread thou at a future time.. could be used by media to see just how past treatment of ME/CFS has quite disturbed many of us and show the legacy of pain Reeves left behind due to his CDC policies. If written on by the right media.. it could be of benefit (rather then being spun the other way)
I'd love to see a thread of that too..detailing all his history in this illness. All should be aware as seeing he's gone, one day CDC just itself, needs to be held accountable for it.
wow. i am trying to stay calm and cool with all the posts written by ppl who are saying we should not be impolite, unfeeling or uncaring; we should thiink about reeves family (they did nothing to deserve our wrath and ire).......but to be honest these type of posts are fueling my anger more and more!!
i am confident that reeves family lived very well off of his salary; this salary was paid to a man who has caused millions to suffer; thousands to die before their time. his role in ME is a disgrace. he marginalized an entire class of ill people. he has caused us to continue to be maltreated by mainstream medicine, to a have no real reliable treatments, to have no biomarkers; to be no where near a cure or understanding of this disease. yet many here continue to defend him and ask those of us who are angry to stifle and hold in our pain and anger; wait for a more appropriate time...when is a better time.? right now dr. reeves name is in the news. a prominent cdc scientist responsible for ME research died. if we dont tell the true story now? when do we and then who will even listen.
just in the past year we have lost 4-6 young vibrant souls to this dreaded disease: remember Amberlin; Patrick; Emily and the other young ppl who are gone because of Reeves misdeeds......speak out now for their lost lives and the role Reeves played in their deaths by leaving ME patients with no hope....that is where your pity and compassion should be directed not toward a man who called us malingerers and said our disease was not real!!!!!!!
No wonder nothing has happen to further the research in this disease...it was not until a loud pushy scientist named Judy Mikovitz came along did we start to feel any hope again; did the govt look at our disease seriously; did more fervent research begin. Thank God for the loudy pushy ppl in this world who speak out when it is most uncomfortable; they are the ones who bring about change......not the quiet respectful mice who call Reeves a remarkable man and then try to explain away their ridiculously insuting comments by defining the word remarkable and the context they meant it.....once again see suzanne vernons CFAA comments on facebook.
as long as there is breath in my lungs and a beat in my heart i will remain angry and outspoken against the govt officials who are killing us with their mis or non actions!!!!!!
Catharsis has its place.
Most of the time, that place is not public.
Speaking abt Reeves misdeeds is not just cathartic it is making sure the truth is not allowed to die and be buried with him.......that his death reveals the misdeeds and crimes he committed and the suffering he caused. change will not happen quietly in a private place......it will happen through lots of loud strong voices demanding change: money for research, change in the way the medical world treats us. it is naieve to believe any differently.
dont let amberlin and patrick's deaths be for nothing.....speak out against the man who took away their lives, dreams and hopes; these young ppl are the ones who deserve our pity and compassion not a 69 yo man who lived a rich full life by denigrating ME and the people stricken by it.
I think this excellent article (very long) by David Tuller has a lot of the details and history you may be interested in:
Chronic Fatigue Syndrome and the CDC - A Long, Tangled Tale - November 23, 2011
Here's the main part of the article detailing some of Reeves' actions and attitudes:
Speaking loudly and strongly can be done in a manner that is still respectful.
Anytime someone needs to let off some steam, it is likely that they are not going to acomplish the above until after they have done so. Which is why it ought to be done out of the public eye. Then they can be confident that their response will be both appropriate and effective, because while they may still speak with emotion it won't be an uncontrolled release.
Every time an ME/CFS patient is treated badly, every time a doctor doesn't believe there's anything physically wrong with that person, every time their illness is invalidated by the disbelief of friends and family, every instance of this leads right back to Reeves, Straus, and Wessely. Reeves gave every person who wanted to, the opportunity to not take this disease seriously: the CDC are the ones who say this is personality disorder, linked to childhood/sexual abuse, found in impossibly large numbers in the Wichita phone book. Reeves' work at the CDC made it okay for the whole world to think of you as a malingering, whiny hypochondriac. This post reads like you're trying to equate talking about this realistically with anti-gay bullying or something along those lines. This makes no sense.
When someone helps to construct a paradigm where people--desperately ill people--are treated the way this patient group has been treated, there is no virtue in not having a problem with this. But you're going to lecture people as though they were engaging in prejudice or bigotry based on ethnicity or race or something like that? Are you kidding? 'Hate begets hate?' Maybe that works for civil rights. Not the deliberate distortion and perversion of medical science.
I've seen plenty of awful, rude posts today, some of them pulled. I didn't take any joy in them. But it's okay to not mourn the passing of someone largely responsible for the predicament we find ourselves in, which is, make no mistake, a crime against humanity. Period.
It is because of Reeves that his cronies at the CDC feel his view on CFS was something nobody has much of a right to be upset about. A difference of opinion. Seeing this, I chose to respond. I'm still trying to figure out if this person knows much about our 'issue' beyond what Reeves told people. If not, what's the excuse for not knowing, and if so, a couple of people putting up a nasty or rude post here or there is somehow worse than what this guy did to lead us to a place where we just live with this disease, as is, for the rest of our lives?
That's not acceptable. Call someone out for putting up a nasty post? Fine. Focus on that to the exclusion of all else, especially why they would have put up a nasty post in the first place? Sad.
When a person dies, many often ponder their legacy. What good did they do in life, who were they, what kind of mark did they leave... . Much of this thread is about how the actions of Bill Reeves affected our patient population, who he was to our population, what kind of mark did he leave on our population. In those terms, it's almost impossible to speak of Bill Reeves in a positive light. What Bill Reeves did in his professional life has had a negative effect on all of us and that is an understatement.
If anything comes from a non-patient reading this thread, it will hopefully be a realization of the effect this man had on our population. We are all entitled to our feelings. We are pondering the legacy of Bill Reeves. I don't hate the man on a personal level because I didn't know him, but I deeply deeply hate what his actions brought upon this community. I have no idea who Bill Reeves was in his personal life, he could have been the kindest man on the planet. His family will be grieving the personal loss of a man who they knew and loved. We are not feeling that kind of loss, we are responding to what he did on a professional level. So for the family, I feel sad for their loss and I do respect the fact that a family member probably wouldn't want to be reading this thread at this time. On the other hand, we are not his family and many are simply responding to the personal pain he has caused us.
Moderator note: Many different opinions have been expressed here and the only thing I ask is that member don't attack each other when discussing their feelings and thoughts related to this issue.
I have now read all the comments on this thread, the threads on other forums I frequent, the blogs they link to etc. and whilst there has been some attempt at trying to explain the rancour being expressed and the vilification - a relatively small number of the comments have left me feeling quite sick.
Character assassinations do not do us justice under these circumstances and I would personally prefer to see some critical analysis of his term of tenure than the kind of vitriol being expressed in these instances.
I don't seek to justify what occurred under his 'watch' by any means but, collectively, we should be better than this and if anyone who knew him wishes to express their feelings of sorrow at his passing, that's their right and we ought to afford them the respect we would ask for ourselves when someone we know dies.
Do you really believe that we as a collective group of patients sharing the same diagnosis are seen as the 'bad guys' tania? I feel quite saddened to hear you say that let alone thinking you might really believe it.
I am sorry if something has happened to you personally to afford you that impression but we aren't you know. We are not seen as 'bad guys' not by any collective authority or the public at large or other patient groups.
My personal concern was in relation to certain comments themselves. I just find it distasteful for want of a better word when an individual has died to - 'pee on his grave'.
If nothing else then the individual can no longer defend themselves or even chose not to. Makes them an easy target and only the bereaved family suffers - so who gains?
Certainly not the individual concerned and certainly not those who follow in their wake (no pun intended).
No need to feel bad about writing the truth here. William Reeves and his family lived well denying the existence of neurological ME. I hope he enjoys all the money.
I am sure the insurance industry will be writing a glowing eulogy of his contributions to medicine and science.
This man's legacy is that millions of people will spend decades unnecessarily suffering enormously, and then dying, from a neuro-immune illness for which the medical treatment is currently psychobabble and contempt thanks to him and Wessely etc., and but for them could by now have been properly researched.
For the sake of clarity, I want to try to separate some of the views I read on this thread, because I think part of what has come up in this thread is an important discussion about how the patient community should comport itself.
I see a few different beliefs in this thread. First, a number of people, including myself, believe that making callous jokes about Reeves' death is unwise because (1) it does not produce any effect that advances our health or the treatment of our illness by the government and medical community and (2) cruel jokes about a man's death could easily be picked up in a public forum and feed stereotypes that we suffer from a psychosomatic disorder. This has been the case in Britain with alleged death threats to psychologists pushing their unfounded ideas. Second, other people believe that criticizing a man after his death is bad form and sends the wrong message. The thought is, "How can we act with the same callousness toward the family of a man who has passed that we condemn in psychosocial researchers, bureaucrats, and the public at large." There is power in this argument. Third, others believe that it is fair to criticize Reeves' after his death because of the harm caused by the policies he advanced while in government, and if his family learns of this thread, then they will be enlightened and any hurt incidental to Reeves' behavior. There is power in this argument as well.
From my perspective, though, the biggest concern in this thread regards the first belief. In other contexts, such as in politics, it does not seem so absurd to suggest that people may say or do things that hurt their cause. Yet, in this thread, I am less sure that people could agree on that statement. Regardless, I think the argument that mean-spirited jokes are unwise because they could be used against us in a more public medium is very reasonable and very compelling. If we can agree on the basic statements that things we may do can hurt our cause and that mean-spirited jokes are not productive, but potentially destructive to us, I think most of us would be on the same page. As a side note, for some of those who have come late to this thread, one or two posts have been taken down that were posted earlier, while one or two others of this sort remain, so some of the posts you read are directed at posts no longer listed in this thread.
Separating these issues out, I don't think there is much here that we should disagree about so vociferously. I think reasonable people can disagree on whether to criticize or not to criticize a man following his death. This is a disagreement that arises nearly every time a major, controversial public figure dies, so it would be silly for us to try to find the absolute answer to that disagreement on this thread.
We can all agree that Reeves' had a negative effect on the government's handling of ME/CFS during his time in government. This goes without question. We should make this fact known. But we should also realize that the problem is much larger than Reeves alone. Any advocacy that we engage in need be directed at the larger problem, which he certainly helped to create and which exists independently of him. He had been out of government for a while before his passing and he now no longer concerns us. We should spend our energies on tackling the larger problem. Putting him and all the others like him on the wrong side of history, as quickly as possible, is what should concern us. That is how we get our health back, that is how we take revenge.
The "Nicey nicey" approach has achieved bugger all in 30 years
Where as "ACT UP" had a huge impact on the HIV disaster/bigotry.
Folk should think on that.
You don't win a gawd damn fight for your life by being prissy
Few people have ever caused as much suffering as Reeves & Co.
Thus they serve every insult regarding such/from victims, that they get.
Doesn't mean they deserve personal harm or to have insults sent to them PERSONALLY (mail or such), though. If they choose to read what others think of them...tough.
They do deserve to be investigated, fired and perhaps jailed.
We all die, tough. Shame for the family and a tragedy if early or horrible death.
Fed up with folk paying more respect to bloody tombstone of non-living rock and cenotaphs than living people...because living people are more difficult and more expensive.
Our words will ALWAYS be be used against us, the "enemy" controls the media and is utterly unscrupulous
They'd make Mother Theresa look like a mass murdering jihadist!
The Facebook CFS community has had absolutely no hesitation about letting the truth fly out of their mouths regarding their "feelings" about Reeves. I have found the no holds barred honesty there very refreshing. The only ones trying to thwart its full expression (of course!) are none other than the CAA. Have a read of some of the highlights I picked out below, or go and see for yourself on the CAA's FB page--link below also.
FROM THE CAA's FACEBOOK PAGE
CAA:Dr. William Reeves, head of the CDC's CFS research program from 1992-2010, passed away last night. He was a forceful personality who evoked strong emotions within the CFS community -- from the whistles many wore in his honor at the 1998 IAC
FS conference following his public disclosure of superiors' diversion of CDC funds from CFS research to other programs, to the unvarnished criticism of his direction of the CDC program in later years of his tenure. Our thoughts are with his family and colleagues.
Suzanne Vernon: He was a remarkable person in many ways. I will miss him.
John Buettner: A CAA principle posting "He was a remarkable person in many ways. I will miss him." firms up my belief that the CAA is in bed with the CDC.
Khaly Castle: This man had been one of the key players in keeping ME-CFS in the dark ages of pseudopsychobabble. This is not a loss. What the real shame is is that his legacy will live on.
Rebecca Fromdafrorums: Reeves caused enormous harm to ME and CFS patients--perhaps more harm than any other single person. Pretending otherwise is whitewashing history. The CAA, especially Suzanne Vernon, should be ashamed for enabling so many of his misdeeds.
CAA: Facts and legend intertwine where Reeves is concerned. He was a man of firm convictions who cultivated a public persona of provocateur. Although these traits often put him at odds with people around him, those who interacted with him in other settings saw different sides to his personality.....The strong reactions here to news of his sudden death are expected given the equally strong views expressed by many in the CFS community over the course of his long tenure as head of CDC’s research program. Reeves was removed from that position in Feb. 2010. By close accounts, he neither sought nor was given any influence over the program after that change was made by CDC management. Accordingly his death is unlikely to affect the current status or future direction of the program. Whether CDC can earn the respect of the CFS community through research that fulfills its mandate to control and prevent disease is the responsibility of current CDC leadership.
Dreambirdie Ishere (me): CAA: What a bunch of convoluted crap that comment above is! The FACT is that what Reeves did to PWME was criminal and the real shame is that he got away with it. Thousands of very ill people have been dismissed as psych cases and malingerers because of HIS actions, denied proper medical care by insurance agencies, left to rot in dark rooms, left to face an early death. I find it disgusting that anyone has the nerve to defend such a man. He deserves the contempt that he earned.
Khaly Castle: No doubt reaction to his death will be closely monitored. Reaction to his death is bound to be laced with blistering emotion. That's reality. When a person causes pain and suffering, it is beyond unreasonable to expect his victims to 'put on their poker faces' upon his death. Anyone (including the CAA) who posts notice of his passing should be prepared to accept that fallout as part of the package.
Otis Quila: For those that believe Reeves helped the cause financially, please reflect on the impact of negative perception Reeves has cast on M.E. which has drawn funding away and made studying the disease career suicide in most quarters for so long. Additionally the tiny amount of money allocated under Reeves went into studies that have DONE US HARM, and will continue to do so. His whistle-blower status made him untouchable and left him with a job for life. Selfless? No so much! There is no "the glass is half-full" story here. The man hurt us for decades and it will take decades to undo what he's done - at the cost to so many gone and so may suffering. And that turnaround depends on the CDC deciding to take a new whole direction and earnestly look for biomedical causes and treatments. Not holding my breath...
Mindy Kitei: CAA’s comments to Sarah Mcg, “Sarah, we receive no funds from CDC” may be accurate, but they are deceptive, as CAA has received millions from CDC. In 2006, for instance, the CAA wrote on its website:
“National CFS Public Awareness Campaign to Launch This Summer”
“We have some very exciting and important news to share with you. The CFIDS Association will be launching a $4 million public awareness campaign on chronic fatigue syndrome this summer. The campaign is so exciting because we finally have the chance to mount a national, concerted, multifaceted campaign to educate both the general public and health care professionals about CFS. The public awareness campaign will extend for more than a year, starting with a launch event at the National Press Club in Washington, D.C., in June that will include a satellite media tour accessible not only to the media, but to the patient community and general public.
“PRIMARY FUNDING FOR THE CAMPAIGN HAS BEEN PROVIDED BY THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) [emphasis added]. The funding came from the health marketing arm of the CDC, leaving their CFS research budget intact. The CFIDS Association was selected as the contractor to implement the campaign. To help with the campaign, the Association hired two of the country’s top PR firms, Fleishman Hillard and GMMB, which both have considerable experience with national health marketing campaigns. Both agencies are involved with research, strategic planning and creative development of campaign components.”
Shelley Stewart Lauer: "we anticipate that the community's reaction to this unexpected news will be closely observed". Then why even post it here? So we can be admonished to sit the corner, hands folded in lap, using our inside voices? Post it on your personal pages if you feel the need to say something. There is no reason to even acknowledge it here if you're concerned about us being "closely observed". Good grief, that's a ridiculous statement. Who will be observing that can do us harm past what is all ready done? I cannot imagine, under any circumstances, that his family would come looking to the patient community for succor and sympathy. Do you think Sandusky's family goes to FB pages of abuse victims? ::shaking head::
Christina Omorocho: I feel sorry for Bill Reeves as I do for all who visit pain upon their fellow human. I can't imagine anything much worse than ending one's life having made so many people suffer. It seems worse, somehow, when it was done with conviction and enthusiasm. I pity him. What a thing to do with your life.
Separate names with a comma.