The Centers for Disease Control’s Dr. William “I just know CFS is psychological!” Reeves has died at the age of 69 from a heart attack—astonishing, considering he had no heart. In 2007, the National Institute of Health’s Dr. Stephen “I know CFS is due to childhood stress!” Straus, died at the age of 60 of a brain tumor—astounding, as Straus had no brain.
Vagina Dentata
I do not have words to describe the incalculable suffering Reeves, Straus and the rest of the CFS marionettes at CDC and parts of the NIH have caused, with manipulator Dr. Tony Fauci (who serves as director of the National Institute of Allergy and Infectious Disease) pulling the strings—though depraved comes to mind. Had there been justice in the world, those in government like Reeves who’ve turned ME into a joke would have died excruciating and humiliating deaths from vagina dentata years ago.
Besides Reeves's lies and obfuscation about the gravity of ME and his through-the-looking-glass gobbledygook—Reeves’s say-what Empirical CFS definition comes to mind—was the litany of phony, “maladaptive personality features” studies and cold-call phone consults to middle-aged women in Atlanta and Wichita who had no clue that they were ill with ME because they weren't. They were just tired and depressed. They didn't have immune abnormalities, virus reactivation, orthostatic hypotension, seizures, short-term memory loss, significant loss of IQ, profound weakness (particularly after exertion), rare cancers and heart disease.
Tony Fauci's Mission
But Reeves's "confusing" ME with fatigue/depression has been, under Fauci's directive, a CDC goal for the past 30 years, and the dedicated government agency has met it with flying colors. This is not a group of bumbling idiots—far from it. Tony Fauci's mission has been to ignore, confuse and neglect a growing epidemic of one million seriously ill people in the United States and millions more abroad until no one believes them, cares for them or spends money on them, including government, schools, employers, insurance companies and, in many cases, ME patients' own families. Hasn't Fauci succeeded?
Still, the ME community is afraid to voice much dissent, believing that things will get worse. How much worse can things get? Seriously. After nearly 30 years, there are no treatments, there is no research, and no one gives a damn about this illness.
I do not have words to describe the incalculable suffering Reeves, Straus and the rest of the CFS marionettes at CDC and parts of the NIH have caused, with manipulator Dr. Tony Fauci (who serves as director of the National Institute of Allergy and Infectious Disease) pulling the strings—though depraved comes to mind. Had there been justice in the world, those in government like Reeves who’ve turned ME into a joke would have died excruciating and humiliating deaths from vagina dentata years ago.
Besides Reeves's lies and obfuscation about the gravity of ME and his through-the-looking-glass gobbledygook—Reeves’s say-what Empirical CFS definition comes to mind—was the litany of phony, “maladaptive personality features” studies and cold-call phone consults to middle-aged women in Atlanta and Wichita who had no clue that they were ill with ME because they weren't. They were just tired and depressed. They didn't have immune abnormalities, virus reactivation, orthostatic hypotension, seizures, short-term memory loss, significant loss of IQ, profound weakness (particularly after exertion), rare cancers and heart disease.
Tony Fauci's Mission
But Reeves's "confusing" ME with fatigue/depression has been, under Fauci's directive, a CDC goal for the past 30 years, and the dedicated government agency has met it with flying colors. This is not a group of bumbling idiots—far from it. Tony Fauci's mission has been to ignore, confuse and neglect a growing epidemic of one million seriously ill people in the United States and millions more abroad until no one believes them, cares for them or spends money on them, including government, schools, employers, insurance companies and, in many cases, ME patients' own families. Hasn't Fauci succeeded?
Still, the ME community is afraid to voice much dissent, believing that things will get worse. How much worse can things get? Seriously. After nearly 30 years, there are no treatments, there is no research, and no one gives a damn about this illness.
Tick Tock
Had Reeves died 20 years ago, no doubt many ME patients would have hoped that Reeves’s replacement would have brought real change. But as we have seen, the government just replaces one dead drone with a barely living one, while many with ME die or wait to live, trapped in dismal, horizontal lives in darkened rooms, tick tock, tick tock.
Sadly, there is no justice, and time marches on.
Teeth trailer. I imagine she has ME as well
as vagina dentata.
Alan Price singing "Justice" in the film O Lucky Man!
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I really did expect better from you. The above comments are not what I have come to expect from this blog and are certainly not constructive or particularly helpful. I am sorry but I'm rather disappointed. I was hoping for more.
ReplyDeleteJack: WHAT exactly were you looking for regarding the death of someone who is responsible for over two decades of a disabling and deadly epidemic? Should we praise this evil bastard for what he has done to millions of people? Should we say lovely things about him given what he has gone to very young children/teens? What about the deaths from associated diseases and suicides from ME. Let's praise Reeves for his crimes against humanity. He's lucky he died as many would have loved to see him in prison, along with the other trash that have covered up this disease and its origins.
DeleteReally, just WHAT did you expect anyone to say about Reeves??? WHAT? I really am very curious.
CDC is researching CFS. CFS research will never help ME patients. CFS is not ME. The Empiric def is for CFS, not ME. It is not just the name but the dx, determined by case definitions and corresponding ICD coding. This is patients' faulty illness beliefs.
ReplyDeleteSo what of the ME/CFS nonsense? CFS definitions, research and researchers will not affect ME, UNLESS, we make them the same. Who doing this? The US "ME/CFS" [ME=CFS=ME/CFS] groups (CFIDS Association of America, PANDORA, Phoenix Rising and their numerous spin-offs), promoting the mythical nonsensical ME/CFS. And even trying to officially combine them via ICD coding. Start with a faulty premise and there can be no progress. So will come full circle, allowing fake ME groups (that are really about CFS or ME/CFS).
Blah, blah, ME is not CFS, blah, blah, it's not a transitional name, blah, blah, it's...well you said it "best"...it's "promoting the mythical nonsensical ME/CFS".
DeleteThere IS progress, you just don't acknowledge it because you were too busy with your endless rant.
Not helping anyone.
Dear God Jill, keep your nutty useless rants to yourself. WE all have had enough of you OCD comments that add nothing to real ME advocacy. Again I tell you to go find another disease that needs your "help".
DeleteSurely Dr Fauci must be nearing retirement - according to Wikipedia, he was born in December 1940, which makes him 71. Tick, tock, tick, tock.
ReplyDeleteAt least he won't be sucking the government teat in the form of a pension for the next 20-30 years.
ReplyDeleteI hope he reincarnates soon and comes back as a mecfs sufferer, just so he can enjoy his legacy to the max.
-Lilly C
Fauci holds the puppet strings at NIH; Steve Monroe is the puppeteer at CDC.
ReplyDeleteBut Straus was no puppet. He coined the phrase "chronic fatigue syndrome," and went to England often to show his support for the Wesselyites.
Reeves actually believed most of what he was fed.
But the true villain in this story is not the individuals (tho some went far beyond the call of duty) - it is the unhealthy role of insurance companies in defining this disease and setting government policy where it's concerned.
Excuse me, I have to go rinse my mouth out with soap now..
Thank you for speaking the truth here. This needs to be said.
ReplyDeleteI am puzzled by the fact that the CFIDS Assn. of America is now lauding Bill Reeves as a hero. He was not a hero. His actions have caused immeasurable pain to thousands of people with M.E.
Like others, I have watched friends die due to Bill Reeves' actions. The fact that he has now died does not change who he was and what he did.
Yesterday, on the CAA's facebook page, Suzanne Vernon (formerly Reeve's colleague at the CDC and now Research Director at the CAA) said: "He was a remarkable person in many ways. I will miss him." and other CAA supporters followed with similar compliments.
What universe do these people live in? They certainly do not live where I live. I see people every day suffering the torments of hell due to the CDC's stalling of real research into M.E., and this evil at the CDC was led by William Reeves.
Reeves was a cruel man and his actions were evil and caused immeasurable pain and many deaths. He was certainly no hero.
CDC is researching CFS. CFS research will never help ME patients. CFS is not ME. The Empiric def is for CFS, not ME. It is not just the name but the dx, determined by case definitions and corresponding ICD coding. This is patients' faulty illness beliefs. Empiric is what it is, and to ME it does not apply. Apply or use anything incorrectly and it will be nonsense. ME/CFS is the real nonsense.
ReplyDeleteCFS definitions, research and researchers will not affect ME, UNLESS, we make them the same. Who doing this? The US "ME/CFS" [ME=CFS=ME/CFS] groups (CFIDS Association of America, PANDORA, Phoenix Rising and their numerous spin-offs), promoting the mythical nonsensical ME/CFS. Even trying to officially combine them via ICD coding. Start with a faulty premise and there can be no progress. So will come full circle, allowing fake ME groups (that are really about CFS or ME/CFS).
Rinse, lather, and repeat...
DeleteIf we look at how many people have died with this illness -the words above are kinder than they should be. We should jail the people who witness preventable death and those who promote suffering. THe CAA is in North Carolina. A state where our son with CFS and a very serious heart problem was kidnapped, falsely imprisoned and tortured on a daily basis....for 10 LONG months.While organizations including CAA sat and watched. Where are the lawyers to help defend our rights?? WE can prove what CFS is including heart involvement - we were chosen because of what we were about to expose. If you believe for a second that anyone has our best interests in mind Follow the MONEY -----------the road does not get any of us any help anytime soon. Help us locate a lawyer -we are ready to expose it all. www.bringingryanhome.com I have played nice for too long. Patients need help NOW. I am ready to expose those who tortured my son. He was treated worse than a prisoner ---of course he has CFS. We are making zero progress by playing nice. There are people who teach/promote tolerance...we have tolerated enough. Legal is the way to go. Where are the lawyers?
ReplyDeleteExcellent post, Mindy. You wrote what I was thinking.
ReplyDeleteDr Reeves told the truth on the name/definition issues
ReplyDeleteExcerpt from May 2007 CFSAC Meeting Minutes:
Dr. Reeves: I just want to make a comment on the name. That is not a public
health marketing issue; that is a scientific issue. I would like to point out
that names are not just assigned willy nilly by HHS or CDC. There is not a
published international case definition for CFS/ME. There was an
internationally-accepted definition of CFS developed in 1994 that has more than
a thousand references in the scientific literature. I am not aware of a
published, internationally-used case definition for an illness called CFS/ME. [*
nor for ME/CFS]
There's no such thing as ME/CFS or CFS/ME.
Patient groups can make up or call it whatever they want on their blogs (and ban and censor anyone who tries to point out the facts) but please continue to inform/remind HHS/NIH/CFSAC of this fact.
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac070516min.html
Fauci is one person. This also leads to Collins and Obama, and every other president who has been in charge in the US since the 80s.
ReplyDeleteJust how did Obama get into this conversation? Has ME eaten your brain?
DeleteGive it a rest, Jill. You've pointed out "the facts" as you envision them so many times it now sounds like a broken record. Reeves lied about a lot of things and this was one more thing he lied about. It WAS a public relations effort, not a scientific effort. We've had the Canadian Consensus definition for decades and Reeves saying he was "not aware" was just more artful misdirection. The "internationally accepted" definition that he and the Wesselites came up with in 1994 was just a continuation of that public relations campaign to convince the world not to take the illness seriously or devote any real research to finding the cause or treatment.
ReplyDelete-Lilly C
Right Lilly C anonymous. You don't envision facts. If the CFS def was a deliberate misdirection, why combine it with ME and combining them via ICD codes as these ME/CFS groups have been trying to do, while offering nothing but ME/CFS misinformation as a PR effort. Let's see, CFS has caused the trivialization and obfuscation of ME, so hey, let's combine them and make it official. Doesn't require much epidemiology or science background to see the stupidity in this. Making up ME/CFS stories won't make any difference, only maintain status quo. I wish the ME/CFS fraudsters would give it a rest.
ReplyDeleteWell said as usual, Mindy.
ReplyDeleteWhat some commentators seem to miss in their rally against the label"CFS":
ReplyDeleteThere are many people out there diagnosed with CFS.
They never had a chance to be diagnosed whether they have ME or not.
They may or may not have the same thing as the people who have the diagnose ME.
But what is sure is that some people who have been diagnosed with "CFS" have the same thing as some of those that have been diagnosed with "ME".
If you distance yourself from patients diagnosed with CFS, you are cutting yourself off from fellow patients.
We need to find out which different conditions make up ME/CFS and what the underlying causes are (pathogens or other environmental and so on).
For that we need unified patients demanding this – and not splitting our forces.
You can't find out the cause of separate diseases or illnesses by looking at everyone in one big group. This is not a subgrouping issue either. They are separate.
DeleteTime to ditch the fraudulent practice of calling CFS a disease, and use real cohorts of homogenous patients.
I never wish evil on anyone but my over-riding reaction is that at least the massive damage this man has done finally has an endpoint. I'm sure someone misses him but I can only think of the incredible suffering he has caused and then say good riddance. AnneK
ReplyDeleteI agree with Tony. My son was diagnosed and continues to be diagnosed as CFS. He also has many neurological problems with his illness. He was diagnosed with a serious heart conduction problem. He is SSA medically disabled and has been labeled as such since 2004. If people can take an SSA disabled kid who draws disability for CFS and imprison him for having CFS whether or not we call that CFS or ME is unimportant. There are probably many ME/CFS patients. Many labeled CFS alone and then many ME alone. I think the problem is patients got thrown into CFS when they should have been ME. No matter what you call it- all ME and CFS patients are getting treated horribly.
ReplyDeleteIt's the patient who has rights not the illness. When I first heard of ME and CFS merging I joked that those with the provable illness would end up being ME (such as a virus being implicated ) and CFS would be a catchall for the rest? I think our government has used CFS as a wastebasket and now they are responsible for sorting it out. Makes no difference what they call it fibro, lyme, CFS, ME -none of these illnesses get respect because they are COSTLY to manage. Best to ignore them all -isn't that what has really happened? A note -our son was considered SSI disabled since 2004 and never drew and monetary benefits because our household income disqualified him. In 2009 our combined income dropped and our son qualified for disability benefits. Department of social services took him after his first disabilty check. Follow the MONEY! How can you cash an SSI disabilty check and also receive matched funds while trying to blame the parents for MSBP? That is how our society operates. They should all go to jail for Medicaid fraud!
Your son could never have been given a diagnosis of CFS, because CFS is a diagnosis of exclusion and your son has biomedical abnormalities. The doctor who diagnosed your son was therefore wrong to have said he has CFS.
DeleteIt is not what the name is, but the criteria used which is the most important aspect. Research will never progress at all if we continue to let them use cohorts that contain no patients with the disease. Which I will call ME
Thank you again JILL MCLAUGHLIN for repeating for the fifth time what you said four time earlier in just this one post.
DeletePlease don't tell others they weren't given a diagnosis of CFS when in fact hundreds of thousands of us have that diagnosis.
And by the way, research IS progressing. Must be so frustrating for you.
Do you have any other hobbies?
Reeves was "remarkable"...as remarkable as Hilter. None of our illnesses get acknowledged by allied government, because then our allied government would have to admit that they already know *the causes* of CFS, GWS, AIDS, Autism, & Lyme (which are all the same illnesses manifested differently in different bodies). ME patients do not have CFS. And not all CFS would even meet the ICC for a diagnosis of ME. CFS and ME are not the same thing. It's a disservice to everyone involved that they get lumped together as one.
ReplyDeleteI thought your comments regarding the scumbags of CFS history were right on. What some people fail to understand is the insane damage that these "researchers" have done to those of us with ME/CFS.
ReplyDeleteI have been sick for 18 years and my husband has been sick for 8 years. I spend up to 20 hours a day in bed, out cold. Now, just how happy am I going to be with so-called researchers who have done incalculable damage to many millions of ME sick? Am I glad that Reeves and the other noted garbage humans are dead? YES I AM. Maybe now we can move forward in real research on a very serious and deadly epidemic.
Well done. Ignore those that do understand the hell that our lives have been with ME and the "cover up" that the above named trash humans have done to us for 30 years.
Both retroviruses, how could the contagion factor of XMRV be different or far more reaching than HIV?
ReplyDeleteNot even HIV (the most well-funded retrovirus in history) ever claimed an infect:harm relationship to extended family members that you hear about with countless CFS & ME cases.
It has never been proven that a retrovirus (e.g., HIV) can cause harm. To top that, we're now supposed to believe that a retrovirus (e.g., XMRV) is aerosoled? Or saliva-based?
It doesn't add up, and I don't subscribe to any of it.
Why would our allied government be covering-up our illnesses caused by a yet-to-be-discovered pathogen?
Isn't it far more logical that they are hiding a known pathogen from the past??
Likely tied to something *political*???
Things are looking a little bit spooky.
ReplyDeleteTony,
ReplyDeleteWe are cutting ourselves off from what should be considered as a misdiagnosis. Absolutely essential for any progress. This forced acceptance of CFS is ME/CFS propaganda, being put forth by so called patient groups (CFIDS Assoc, Pandora, Phoenix Rising and the various spinoffs). So no, we don't "have to" accept ME/CFS and do more research and wait and see - we already know.
You say that those with CFS may or may not have ME, so that's the point, which you recognize. So take the fatigued and apply what works for them (like CBT and exercise) to those with ME, who will be harmed by this mixed dx.
That CFS has caused the trivialization and neglect of ME patients, and patients have historically hated CFS, so hey, let's make them the same and even officially try to combine them via ICD codes as these groups have tried to do. Besides being truly idiotic on its face, this is a serious betrayal of the very ill, perpetrated by deliberate and concerted efforts by these groups - NOT the gov't - to combine them and make them the same. No true advocacy would want patients to be misdiagnosed as something which would result in harmful inappropriate treatment.
It is not unity or collaboration to accept or combine with misdiagnoses that are harmful, which is being "sold" as advocacy (with banning censorship or anyone who objects). ME patients continue to fight for recognition of *their* illness, which is not CFS, and counter the ME/CFS misinformation put out by so called patient groups that is working against us.
Reeves stopped working on CFS work a while back. He helped for a while (he did get millions back for us in 2000) as a whistleblower, then he went astray, first losing his usefulness then doing harm, going backwards, in the studies he published.
ReplyDeleteBut when a man dies, what do I say? Sorry for your loss, to his family, to his coworkers.
Yes, we are sick, but we can still be thoughtful of others.
And then keep on advocating for what we need.
I am a CFS patient. I cannot wake-up tomorrow and decide that I have MS. Just like I cannot wakeup tomorrow and decide that I have ME. CFS is a SYNDROME (like AID"S"). ME is a disease (like MS or malaria). I hate when people commingle CFS & ME as if they were one entity....it's a disservice to everyone involved. I DO NOT HAVE ME! I HAVE CFS.
ReplyDeleteI HAVE HAD THIS illness for four years. Just spent a year in Charlotte on ampligen. I'm about 50% better so it was worth the 25,000 for ampligen and medical fees at Hunter-Hopkins Center. There were four of us one young man from Louisiana bound to a wheelchair and two 23 year old twins from Norway. This is a women's disease right ? I'm a 43 year old male who was healthy until four years ago when my father died of cancer and a year later mother was diagnosed with cancer. Ten years ago i had Mono and that is what is believed to have released hhv6a back into my system. dr. salvato in houston is the only real cfs specialist and she figured out i has high levels of hhv6a for which there is no cure. I've worked since i was 16 and fought in operation dsert shield and desert storm. Worked for southwest airlines for four years,post office,special services manager at bush airport and a truck driver for 5 years. Why would i want to leave a job with weekends off 35,000 a year for 900 a month ssi ? I've been waiting for almost two years to see a judge to appeal the automatic denial of ssi for cfs. It's all about money and the government doesn't give a damn... They drag the process out so hopefully you will die and they won't have to pay... I don't remember what it was like to play golf or have friends. I'm married but it's not fair to make anybody a caregiver forever... I pray every night for the lord to end my suffering because i'm not living just waiting to die... I ask him to take me in my sleep i don't want to commit suicide and go to hell but i feel I'm in hell already...
ReplyDeleteBeautifully written. Thank you for making me smile. It's good to know one more soul cares and understands and knows!
ReplyDeleteMy thoughts, prayers, and heart to all who need them. You're never alone. There's always love, just remember and recall it. For what's it's worth, I'm sending it right now. :)
Stay strong.