For the moment, I’m using the word “criminal” informally; I don’t think we or they yet know for certain what is and is not prosecutable. I have no doubt it will be sorted out, and sooner rather than later. I’m guessing counsel for both CDC and NIH have been working overtime; the flop-sweat might actually be visible on some of those government brows in Washington next Thurdsay and Friday.
As for CDC, I think we can all agree how correct and perfectly appropriate—and smart—it would have been had the people responsible for the most horrific scientific gaffe of the century graciously retreated. Said NOTHING. Kept their heads down.
We might have savored the spectral silence of the lizard in retreat.
Not a chance.
Not after Tahoe, where the agency laid down its gauntlet.
And not after the gravy train years of the Nineties when millions of dollars were pouring into the agency and nothing was coming out except crazy, weird definitions invented by a "bunch of guys smoking cigars--well, it was the CDC, so [they] weren't smoking cigars," as Bill Reeves said so memorably.
Certainly not after spending millions more to brand "CFS" so deep in the mainstream culture it rolls off the tongues of doctors and the keyboards of journalists as if it stood for something that actually exists in nature. What a phenomenal sell job those guys did! All under the guise of science. And that wild construct about child molestation and genetic inferiority? The one that took Reeves years and Abt Associates millions of dollars to fine tune. Do we really expect them to abandon that overnight without some major pushback?
Reeves is not someone who goes down without a fight. We've seen the movie. Backward reels the mind to 1998, when the inspector general of the Department of Health and Human Services rapped the CDC's knuckles for lack of accountability and stealing a lot of money, too. Soon after, the Government Accounting Office, the oversight agency Congress turns to when Congress wants an objective investigation of a particular federal agency, did the same.
Reeves' move? The stuff of legends. Instead of fessing up, he sued his boss Brian Mahy for "harrassment" and with the mantel of the CDC-contractor, CAA, draped round his shoulders, tattled on his colleagues, branding his co-workers the bad guys and himself the saint. Incredibly, it worked. CAA helped Reeves achieve the brass ring: the man can't be fired. He's a federal whistleblower. Another round of applause for CAA, the dream team of Kim McCleary and her lobbyist Tom Sheridan who saved Reeves’ from ignominy, touted him as a hero to innocent patients and left him in charge of “CFS” for the next decade.
But, as someone wisely pointed out on some chat room board posting recently: Bill Reeves is hardly among the top-rung at CDC. He's chief of the "Chizzle Fizzle Sizzle" program. (If you’re wondering, that’s my new name, Snoop Dog-inspired, for the phrase a few CDC/NIH politicos have used to keep patients poor and powerless since 1988. Chronic Fatigue Syndrome no more. As Muhammed Ali famously snapped at Howard Cosell when Cosell persisted in calling him Cassius Clay, “That’s my slave name.”)
And, given that nearly 100 percent of a large cohort of very sick people (VSPs) are permanently infected with a contagious oncognenic retrovirus (with evidence of either antibodies or active infection) and another 3.7 to 4 percent, conservatively, of the general population is also permanently infected with the same virus, then Bill really shouldn't be the frontman for the CDC with the New York Times, L.A. Times, or any other newspaper, major or minor. That Reeves is still allowed to even open his mouth when a reporter calls Atlanta signifies how confused the agency must have been when this news broke. It must have been chaos down there, actually.
Tom Frieden, the director of the CDC, should be speaking for the CDC on this one. There are at LEAST 11 million people in the U.S. who are infected with the third human retrovirus and probably more. This is an on-going investigation and there's no telling how deeply embedded this infection is in the world’s population at the moment.
Tom Frieden used to be the Commissioner of Health for New York City. Frieden was considered a very sharp guy when it came to infectious disease in New York. Unlike the eugenicist crowd in Bill’s shop at CDC/Emory, Freiden is known to believe in the theory of causation; he is, by reports, acquainted with the germ theory of disease. His sub-specialty training was in infectious disease; he has battled tuberculosis in India and New York City. Why isn't Tom Freiden talking to the New York Times about XMRV and "CFS"?
Were I Freiden, I wouldn't allow Bill Reeves anywhere near the press. I would be trying to find an outbreak of giardia or dengue fever in Siberia or Afghanistan--Bill once told me he enjoys doing epidemiology in war zones--where I could send him, asap.
XMRV is a national emergency. At the out-of-it Centers for Disease Control, when the Science story broke, it was still the Bill Reeves Show. And maybe that was the strategy—let Bill be Bill. Keep the media focused on swine flu and allow Reeves to characterize news of a contagious cancer-causing virus infecting 11 million Americans as suspect—“representing a single pilot study.”
“There isn’t anything Reeves said [to the press] that was scientifically correct,” one of the scientists associated with this work told me recently.
Let’s start with Reeves’ comment: “Until the work is independently verified, the report represents a single pilot study."
Blood samples from one-hundred plus patients? Over 200 healthy controls? The phylogenetic tree established? The results confirmed in THREE labs—the Cleveland Clinic, the National Cancer Institute, the WPI? Lab contaminants ruled out using three different tests? That's a pilot study?
Bill, what have you been smoking, seriously?
How about Bill’s comment, expressed to the New York Times that he was “surprised” a “prestigious journal like Science” had published the study.
Bill might have been able to get away with trashing the Annals of Internal Medicine for publishing Anthony Komaroff, Bob Gallo, Paul Cheney, Dan Peterson and others on their study of 258 patients, “A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders and Active Human Herpes Type 6 Infection," in 1992. In fact, his m.o. has been to viciously trash any published science on this disease for the last twenty years. But now he just sounds like the cranky, delusional old uncle nobody wants to sit next to at the dinner table.
Bill, it’s 2009, not 1992.
Frank Ruscetti isolated the first human retrovirus infection, HTLV (Human T-cell Leukemia/Lymphoma virus) at the National Cancer Institute 30 years ago. Bill thinks Ruscetti doesn’t know what he’s doing? Bob Silverman was a co-discoverer of XMRV; Silverman doesn’t know what he’s doing? Science was duped, just like the Annals editors were duped in 1992?
Bill thinks he can infer Science editors and the top-tier scientists who reviewed this paper don't know what they're doing? Is he kidding? When was the last time he or anyone involved with him was published in Science?
Bill is so out of his league here, but that’s hardly news.
Here’s another: Bill says he can’t interpret the findings because Science didn’t state the age and gender of the patients. Since when do viruses respect or differentiate between men and women, kids and grown ups? A person could only say such a stupid thing if they didn’t believe XMRV existed, had gone fishin’ during Virology 101, or had some political agenda that might be characterized as propaganda. Bill also suggested the paper didn’t mean much because he, Bill, didn’t know how the patients were selected. The patients were clinically defined by every medical criteria, including the CDC’s. What more does Bill want? Does he need to be assured they’re all overweight depressed women living in Wichita who Bill rounded up in a phone survey?
And here I must offer an apology to the entire city of Wichita, and particularly any depressed and/or overweight women living there, because you don’t deserve any of this—none of us did—but Bill has defined as his patient cohort people who fit those categories. Okay—I’m being glib—I’m leaving out victims of child abuse with a genetic predisposition to being unable to handle stress. (This really just becomes so silly—whenever I try to explain to the uninitiated what the CDC claims this disease is, they think I’m kidding, including editors at major newspapers.) By the way, has anyone in the world ever been able to replicate that genetic flaw Bill and Suzanne found? And could it be they haven’t bothered to try because they know it can’t be done, and that even if they tried and proved it can’t be done, Bill would badmouth them in every major English-language newspaper and probably some foreign ones, too?
And by now most will have heard about the doozie: Bill’s comment that XMRV is a ubiquitous virus. That must have been a big Whoo-hoo! moment for the Science collaborators.
These collaborators didn’t just arrive on the scene last month from Mars; they knew going into this work what the CDC did to Elaine DeFreitas and her retrovirus finding in 1991. They understood the politics. They were aware of the agency’s multi-million dollar propaganda war on a million very sick people. They were prepared. They CDC-proofed this study. The rigor in the Mikovits-Ruscetti-Silverman paper was such that Science had to take the paper.
Nevertheless, that doesn’t mean the CDC isn’t going to try to find XMRV in their Wichita folks. We've seen that movie, too.
Is anyone else fed up with the balance of power in this situation? Think about it--there's only one Bill. Bill vs. one million people?
Bill and his comrades have been holding hundreds of thousands, and now millions, of people hostage for a couple decades. That's a long time to be in the "penalty box of life," as someone described it in the comments on this blog. Can anyone explain why it continues to be necessary to pretend Bill is a scientist or has done anything helpful with taxpayer dollars during the last 22 years? Can we all finally agree it's not just time for Bill to go, it’s time for the agency that allowed him to create an entire new class of Americans who are both near-destitute and near-death to just throw in the towel on this one? Fixate on swine flu. Please! Leave this disease, and the epidemiology of this virus, to scientists.
Bill asserts the CDC is trying to replicate the Science data regarding VSPs. Assuming the brainiacs at CDC can even find their way to the right lab in which to do the experiments, one worries whether they’ll do the experiments properly, which they failed to do twenty years ago when presented with a retrovirus. But what is even more worrisome, we also know they wouldn’t know a case of this disease if they fell over one.
Reeves' very predictable pushback needs some pushback. I suspect the scientists who made this discovery are going to need support when CDC starts working its magic. You know the backstory; you know the history. And if you’re positive for XMRV, according to Judy Mikovits, you need treatment, you need medical attention. Demand it. It's time. And if you want another perspective on this from poet and author Peggy Munson, who writes about the pushback coming from another quarter--psychiatrists and vitamin purveyors and quacks who see their own little empires imploding with the XMRV data--check out her blog on the subject.
A prominent scientist in the field notes: “There have been enough tilt tables and enough questionnaires. Why fight a battle with shrinks when there’s a deficit in the B-cell?
It’s a shame it didn’t happen in 1998, but now it’s really time for Bill to go home, as in, retire--if he's not already under house arrest. There are a million of you, there is only one Bill. Those are good odds.
This one is for you, Bill.
Comments
www.CFSfacts.org
You are such a delight to read!!!
I have one question. Shouldn't everybody who is loyal to him be dealt with at the same time? Is there anybody under him who can be trusted?
I fear a symbolic resignation achieving little.
Samuel
Tell me how a supposed patient advocacy org. called CFIDS cannot be doing this already? Are they still asking for donations?
I am not accusing anyone here. I genuinely want to know what the advocacy org has done. And I genuinely want to know what I can do.
I'd like to push this one step further and suggest that the bleedover belongs to the CAA.
The discovery of the XMRV retrovirus could be a huge breakthrough in modern medicine. Its association with Chronic Fatigue Syndrome has the capability of finally putting to rest the biopsychosocialbabble that has been associated with the disease since the beginning. The fact that this discovery comes out of the combined work of the Whittemore Peterson Institute, the Cleveland Clinic, and the National Cancer Institute gives it stunning credential. Dan Peterson’s diligence in preserving samples from the original Incline Village cohort gives credence to the virus’ association with the inception of the disease at its roots.
If what we are doing is searching for the truth, the real story of what happened to those people in Incline Village, the very people that CFS was named for…then we couldn’t ask for a better set of circumstances or a more perfect scenario. If this is the case, then I would expect my national advocacy representatives at the CAA to diligently follow this research, promote its continuation in every way possible, and to embrace its possibilities. I would expect them to provide links to video interviews. I would expect them to follow international opinion and report it to us. I would expect them to use this opportunity to muster a united front .
I’m not seeing that.
Instead, I am seeing Andrea Whittemore-Goad post information on the CAA’s face book presence and receive no comment from the CAA itself. I am seeing the CAA take the opportunity to drag out research on EBV (still being pursued by Dr. Vernon, it seems), even though the entire reason the disease was named CFS is because it was definitively proven NOT to be Chronic Epstein-Barr. I am seeing articles being posted about “scientists” not supplying their pool statistics, about why we shouldn’t rely on science that is being produced by entities not funded by the government, and about how there are conflicting articles about the XMRV association with prostate cancer. They failed to mention that the association made with XMRV and prostate cancer was with a particular form of prostate cancer, not ALL prostate cancer.
I do not expect to see the CAA to jump up and declare, at this point, that all of our problems are solved and that this is definitively the cause of CFS. I think the discovery of this retroviral connection is just the beginning. But I certainly don’t expect to see the people who claim to be advocating for me, sabotage progress. And that is exactly what they seem to be doing.
What is really their agenda? Who are they working for? Why are they vested in perpetuating so many myths and turning their backs on history? Why are they so profoundly steeped in insisting that “science is a social effort?” What is it about the truth that puts the CAA, in my eyes, in the enemy camp?
Lets talk about subsets for a minute. I know that there is a variance of opinion within the community about whether or not there truly are subsets in CFS. What has really happened here is that the disease itself has been made a subset of one of its own symptoms - chronic fatigue. There was, in the beginning, a definitive illness with a particular set of biomarkers and a presentation that made it easily recognizable to the doctors who were dealing with outbreaks. Since the day it was trivialized with the name CFS, the description of the illness has metastasized to the exclusion of the disease itself. By virtue of taking one of the symptoms, and certainly by no means the most debilitating one, “Fatigue” has become the definition of the disease and the disease has become a symptom. So, certainly there are subsets of the chimera created by the CDC, which seems to me like a crazy man’s hallucination of an alternate universe.
The CAA, whether by design or omission, has pretty much ignored the history of the disease and declared it “irrelevant”, thereby taking a heavy hand in perpetuating the alternate universe. If this has been by design, it’s evil. If by ommission, it’s mindboggling that an advocacy group would neglect to study the disease it is advocating.
The way I see it, we are at a crossroads. We have choices to make, and the time is upon us to make them. Maybe we should declare ourselves XANDERS, and walk away from the entire mess. Let them continue to try to psychologize their CFS chimera. If Dr. Peterson wants to call this disease XAND, I’m okay (for the first time) with the name change.
Maybe we should seriously consider a few class action lawsuits. I’m game.
I don't know what Hillary recommends, but I recommend educating yourself, educating your friends (and anybody else you can think of), and donating to the Whittemore-Peterson Institute in Reno, NV.
Samuel
Unfortunately, I have no good health or money to go to Washington DC next week, but I will be watching from my bed- the demise of the man who made millions even more miserable, isolated poor and sick than they deserved. Let the man pay, give away his home and wealth, and let him experience what it's like to be infected with XMRV. Maybe he'll need a psychiatrist after all.
Khaly - hear! hear!
To anyone who still thinks Chronic Fatigue Syndrome is an ok name for this disease, or who stands quietly by while the CDC continues to use it, or who thinks a journal on fatigue named "Fatigue" is still a great idea, just look at the Oct. 23 airing of Dr. Oz's show with Dr. Teitelbaum as guest speaker. I couldn't stomach the show, so I have had to read the posts about it. Seems the entire show concentrated on those overweight, stressed and depressed women in Witchita. CFS is about fatigue and how self-help gurus with semi-holistic, semi-medically sounding advice can help you become the next world champion aerobics instructor. This is partly about mind over matter, eating right, sleeping well and drinking LOTS of water. THAT, my friends, is where having fatigue in the title has gotten us. Doctors preying on unbelievably ill and desperate people trying to manage their patient's "fatigue" and making money hand over fist. I want nothing to do with having CFS anymore. I don't have CFS. I remember when I first got this illness an my father was questioning why I was not working harder. I told him it felt like something was in my very blood. That I could feel it in my shin, my muscles, my bones. I said, "I'm not sure. For all I know it's like leukemia, or something. I know that sounds melodramatic, but that's how I feel." Oddly enough, there could be much more truth in that than I knew in 1996.
I'm ready to sign up for being a XANDer right now if it wasn't for needing to wait around just a bit longer for things to be validated by other labs. I'm looking for a place to order my hoodie.
"The design of replication studies should include CFS patients who are similar to those selected by Dr. Peterson and reported in the Science study. Unfortunately, the details about the CFS patients were not sufficient to enable independent investigators to select similar CFS patients. For example, we need to know the age, sex, duration of illness, medical history, and medication use – to name a few characteristics – of the studied patients to select CFS patients who are as similar as possible to the original group. We also need to know something about the healthy control subjects, since there is nothing in the paper or supplementary materials that describes how they were selected. Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls. We are actively working with several independent research groups to expedite these studies.
While these exciting studies of XMRV continue, the CFIDS Association continues its support of our funded investigators. It’s important to remember that HIV was discovered to be the cause of AIDS 26 years ago, but worldwide research on AIDS treatment, cure and prevention continues today. Our funded investigators’ research on why Epstein-Barr triggers CFS, whether ion-channel receptors are markers of fatigue, why CFS patients have higher rates of leaky gut, why CFS patients have slow blood flow to the brain, why CFS patients have metabolic disturbances in the brain, and how we can bring this information, as well as XMRV, together using powerful computational tools are all important as we work together to solve CFS."
Annual salaries, 2008:
Kim McCleary....$177,517.00
Tom Sheridan...$165,896.00
Suzanne Vernon...$137,318.00
Reeves and Jones have been wandering the countryside trying to find a foot that would fit into their glass slipped. Maybe they should realize it's after midnight and their beauty, the one who fits their glass slipper, does not exist. Maybe the world will start to realize that Reeves' and Jones' glass slipper does not exist as they have defined it. The time for fantasies is over.
I'm a simple soul from over the pond, but what I'm wondering here is whether or not Mr Obama is au fait with your writings and if not, might it be an idea to ask an audience of him - you and those who head up the WPI collectively?
Again from my basic understanding of US politics from my standpoint of overseas observer I am led to believe that your new Administration wants to clean up Public Office. What better way than to start with Reeves and his underlings at the CDC? Surely this is the publicity both we and the President might like to enjoy? A symbiotic relationship of cleansing and clearing out the bad wood?
Just a thought?
About Obama, well sounds reasonable, but he has hardly been the force for change that we had all hoped for.
wanna chuckle?
Obama SNL parody
http://www.youtube.com/watch?v=RYnMYZDsrJM&NR=1
Jill
.
Their moniker - the Centre of Disease Control - suggests that it’s their job to prevent the spread of disease. I haven’t heard the words “we are taking urgent action to limit further spread of this disease via the national blood supply” come out of Bill Reeves’ mouth. I would expect that kind of a statement from a national centre of disease control. I’m a little bit alarmed about that. I’m also a bit concerned that, in spite of the existence of the Centre of Disease Control and millions of dollars in funding, two retroviruses have taken hold in the general population in the last 25 years and, one at least, is continuing to spread unabated. Time for some urgent restructuring and rebranding of a certain organisation methinks. Let’s face it; the Centre of Disease Control is as inappropriate a moniker to such an organisation as Chronic Fatigue Syndrome is to a retrovirus. How about CSDS? The Centre of Serious Disease Spread. It’s more accurate.
If for any reason this presentation reflects negatively on us as a patient community, then it goes without saying that criticism would be well deserved. But I'd guess there's more to it than it would seem based on that description.
After a quarter century of open ridicule we now learn that we may be the most abundant source of XMRV, and investigation of Tahoe samples was the best hope of early detection of this agent.
If it hasn't sunk in yet, XMRV does not belong to a family of pathogens called "murine prostatic cancer viruses". Its family is called "murine leukemia viruses", and for good reason. Decades of interest have been shown these viruses for their induction of leukemia and lymphoma in mice. If the CDC had not been too busy defaming the sick, they might have noted Dan Peterson's concerns over the incidence of lymphoma in his patients, or that Lucinda Bateman's PWC sister died of same.
DeRisi's microarray found XMRV in prostatic cancer, because that's the cancer they were interested in. Hung Fan, Stephen Goff and John Coffin--this nation's gamma retrovirus elite--have all endorsed in one way or another XMRV research. How long do you suppose it will be, now, before they look for XMRV in leukemia/lymphoma and estimate the last 25 year's worth of dead children?
We're coming for you, CDC.
We're coming for you.
You can add to that million people all the people in other countries with this devastating illness. Here in the UK I'm watching intently to see what will happen with the CDC and XMRV, because it will affect us all too. I'm 34, bedridden, and been ill since I was 15. The more I read about the politics and history of CFS in the US, the more appalled I am by the CDC! Things are pretty dire for ME/CFS patients here in the UK, as you know, but I always thought you had it better in the US...
Thanks for your excellent blog.
Blame the CDC!!
"Three of us with ME/CFS, all totally disabled and from severely to moderately sick with
various symptoms, watched this farce. (Dr. Oz show with Dr. Teitelbaum). Dr. Teitelbaum will do anything to sell another
book, even be relegated to a 'yes man' on Oz's show. I don't think he said more than
20 words, did he?
Remember, hundreds, if not thousands of us wrote to Oprah when Oz was on there
regularly, begging them to do a whole program on 'cfs'. They never did, and I think
it was because Dr. Oz was a non-believer in the seriousness of this disease. When
Oprah was diagnosed with hypothyroidism, after all of Dr. Oz's advice and treatment
regimen for good health, I thought, 'oh oh, what in the world would happen is she got
'cfs'?" Haven't a lot of people with M.E. also been diagnosed with hypothyroidism? Is
is a subset of M.E.? I don't know, but I'm sure worried about Oprah.
The three of us said things like, what about my crippling spinal pain, my horrific
headaches, my needing to lie down immediately or fall down flat on the floor, my
digestive system malfunctioning, my bowels never working right, my heart racing
just from sitting up after a night's sleep, my inability to remember a talk with even
my loved ones, my crippling sore, flu type body pains, even the pains in my very
tissues, the neuropathy in my feet and ankles, my constant sore throats and low
grade fevers, the night sweats, ...well, you get the idea. Not all three of us have
all of these symptoms, but we all have breathing problems, and inability to do
anything aerobic without severe consequences.
The only funny around here is listening to our own conversations; one starts the
talk, another replies to a totally different topic, the 3rd person says, 'huh?', and
on it goes to nowhere. Our brains do not work right and my very sick granddaughter
is only happy because finally, after almost 9 years of no family being able to
tolerate her illness (denial), she is here with us and we KNOW how she feels.
Remember, all of our complaints lie at the feet of the CDC. It is they who have
perpetuated the myth of 'fatigue' as our primary symptom. No one else is to
blame. It is the CDC that has systematically taught not only the public and our
families to disbelieve the seriousness of our disease, but they have taught our
doctors to disbelieve us when we enumerate our symptoms, when we beg for
a test to show our cardiac dysfunction (diastolic heart failure), and when we know
our immune system has gone awry and they refuse to refer us to infectious
disease specialists.
ALL of this if the willful fault of the CDC.
After this CFS Advisory Committee meeting (CFSAC), if Reeves insists that his
verbiage actually means research, research, research, especially into the XMRV
being an important factor in M.E., I only have one question to ask him: why has
it taken 25 years to even begin this research? Why did it take a private research
initiative to find this retrovirus? Why hasn't the CDC offered some of the few
millions they get for 'cfs' out to researchers who were really interested? Why has
he made it so difficult for others to find answers for us?
The 'cfs' program at the CDC has been, and seems to be headed as continuing
to be, a farce, a cover-up, in order to satisfy not only his own ego, perpetuating
his own personal myth as a 'whistleblower' who will set things right, but to
satisfy his own career path into Emory's psychiatric field, which also seems to
be complicit in the whole charade.
Blame the CDC, and if their work is not sent to the appropriate department
at the NIH immediately, we must begin a Congressional Inquiry at once.
That's all, folks..
kathryn
I said it's all the fault of the CDC, but you know, as I reread this, I couldn't help but think, well, the CAA helped, to, didn't it? I mean, after all, they got all that money from Bill and helped put those posters in malls across America (and it only took $5M dollars from the CDC to them to do it)...you remember, those lovely, wonderfully coiffed men and women who 'looked' healthy and had stories to tell; you didn't see those of us who never go out of the house unless food could not be procured by a friend or relative; who never go to a movie or out to dinner; who cannot bathe without a telephone on the floor next to the tub in case we crumble with the effort of washing our hair; who cannot have a pet because we cannot take care of it, not afford its medical care, much less our own, if we can get it at all; those who live in a 'cave-like' room with only a TV and computer for company; those who cannot even bear a telephone call because of the sensory overload coming in via the ears; those who live on Tylenol for the pain because they can afford nothing else while they are waiting to be approved/disapproved for SSDI; those who got sick as kids and made it to college and then crashed and burned, and therefore are NEVER eligible for SSDI unless THEIR PARENTS ARE DEAD, RETIRED ON SS, OR DISABLED AND ON SSDI...can you BELIEVE that????!!!...well you see what I mean.
The CAA's very life is centered around keeping the word 'fatigue' alive, I believe. What will happen if the name is changed to XAND? What will they do? Oh, I know; they will be the org that investigates it, and they will have millions of new patients flocking to their org, donating money, maybe even more than they ever had. Maybe they will become the 'chronic mono' org that will guide teens and college students who get it through the month or so they will feel terrible. Maybe they'll get Teitelbaum on their Board, and start a Forum like others, and sell supplements.
Oh, they have a great future.
Also, the salaries for 2008: Kim McCleary..$177,517.00; Tom Sheridan..$165,896.00; Suzanne Vernon...$137,318.00 -- is this a joke??? These salaries are way to high for a suffering non-profit. I was NOT going to get into the CAA debate but after seeing these salaries (and if in fact they are true), then I must agree, time to clean out this "non-profit advocacy group" now too. Clean out the CDC and the CAA - fresh start. If McCleary is indeed making ove $177K, then come on! Cut her salary or just get rid of her. What HAVE they done for us recently? I guess I am on a side now - against the CAA. But I won't allow it to pull my attention away from the real crooks in this deal - the CDC, Reeves and his band of merry morons...
Lo and behold, in 2008 he started to feel even worse and again went back to our GP. He told him that the Lyme was gone and didn't know what was wrong. After much yelling on my part we got the name of some rheumotologists and after 3 months got an appointment with one of them (approved by our health insurance of course).
This doctor saw my husband and with the compassion of a dead fish said he had CFS, and that there was very little that could be done to help him. Of course, Cymbalta was prescribed. My husband protested that he wasn't depressed and the doctor dismissed his protests. Sound familiar? We didn't even know what CFS was!
Well, now we know - it is a disease - a retrovirus - that is robbing our family of a brilliant husband and father and ruining our life.
Now this incredible research has come about and the government that we have paid for is leaving it in the hands of the CDC who, for all appearances, has done nothing for 25 years. If the CDC had been doing its job, protecting the health of the people of this country, my husband would have had this identified and had treatment. Now its too late. He's had this for years and it is getting worse. We're new to this but ...
Tell me, what can we do. This is appalling. I want to write my congressmen, my senators, the President, the head of the department of health & human services, EVERYONE! Sorry for going on, I wanted to commend you, Hillary, on everything you have done to help this but it is time to mobilize and bombard everyone about the CDC, the incredible work done by WPI, and get some results after 25 years of inaction.
Thank you, again. I'm ordering your book from the library this weekend! I would pay you for it but you know the drill, I can't afford it at this time.
I hope you enjoy Osler's Web, which represents nine years of research and writing. I believe it will give you the factual/intellectual grounds to understand how this enormous and incredibly tragic public health crisis came to be, and perhaps a way forward. Harvey Whittemore once told me he found the book to be a "difficult read"--with every turn of the page, he said, he wanted to throw it against the wall in anger. And that, I told him, was exactly the reaction I would have hoped for. And after the anger? Action. But the forces arrayed against this disease, even after its association with the third human retrovirus, remain entrenched, and it will take everyone's efforts and ideas and sheer brain power to oust them.
Thanks for writing.
but plenty like reeves
what a shamefull profesion psychiatrists are witch doctors answerable to no one they will cover this one up and move on to the next brown gk