If you know what happened this afternoon, read on. If you don’t know, here is the link. Then, if you want to talk about it—if you are not too busy crying or screaming or calling your best friend or praying to your God or simply struck numb—come back here.
A nova has appeared in the constellation. We knew it would appear some day—but in our lifetimes? Many of us, having given up on recovery, had merely hoped we might live long enough to understand the scientific basis of our suffering. Thousands, perhaps hundreds of thousands, of us didn’t make it, or simply gave up. Between the time Dr. Judy Mikovits of the Whittemore Peterson Institute and her collaborators at the National Cancer Institute and the Cleveland Clinic submitted their paper to Science and today, we know at least one woman, the British citizen Pamela Weston, chose assisted suicide rather than go on; in the note she left behind she wrote that she hoped her choice would, in some part, move the UK medical research forward. Might Weston have hung on had she known about XMRV? We grieve for those who couldn't wait, couldn't hang on, and acknowledge their bravery. For the rest of us, this is a day to celebrate.
We don’t know for certain what is going to happen next. We only know—we must understand now—that some great piece of our suffering has ended.
All those petitions we signed in the tens of thousands over the decades? All the hope that was bound up in those petitions, our pleas for mercy? Just part of our suffering, part of the trail we had to walk, like refugees, through our private war zone. Only we knew what it was like.
This nova will redefine the relationships among the stars. Astronomers’ maps are being redrawn as I write this. From the doctors’ we visit, to the insurance companies that have mercilessly controlled our access to medical care and disability support, to research laboratories at major universities and in the laboratories of federal health agencies—change is coming.
A generation of quacks and sub-par investigators will be in retreat, as well. Let them pursue their study of "chronic fatigue sydnrome."
The real scientists have arrived and they'll be studying XMRV-associated neuro-immune disease, a.k.a., XAND.
The name ginned up in Atlanta in 1988 to make sure disability insurers would not be required to pay out on disability policies and the public would assume the malady was a new category of mental illness? One can imagine, or simply hope, that the phrase is about to be jettisoned into outer space where one can fantasize it entering the band of space trash circling the earth. For months, the team at WPI has been playing around with names. In lighter moments, their favorite became “I.T.V.S.,” the acronym for, “It’s the Virus, Stupid.”
Thank you Harvey and Annette Whittemore; thank you Daniel Peterson of Sierra Internal Medicine; thank you Judy Mikovits and Francis and Sandy Ruscetti and your collaborators at the National Cancer Institute; thank you Robert Silverman of the Cleveland Clinic. Anyone who knows the immense backstory here will appreciate the profound cosmic justice of today's revelations.
In less than two years and with a million dollars--most of it private, philanthropic money because both the NIH as well as the CAA refused the institute's requests for grant support--Mikovits et. al. appear to have solved our problem.
Science magazine held the paper, submitted in May, through the summer while federal scientists in Bethesda worked on their roll out strategy for the discovery that XMRV, the fourth human retrovirus, had been found in the blood and saliva of 67 percent of "CFS" patients. Today, Mikovits is finding XMRV in 98 percent of the patients tested. She and her colleague in Reno, Vincent Lombardi, have found the virus in patients from multiple outbreaks, mutiple geographic regions, and in patients' blood samples that have been frozen since the mid-1980s.
Will anyone with “CFS” not be positive for XMRV? Certainly. Of course! I suspect there will be negatives among CDC's patients in Macon County, Georgia; same goes for the CDC's cohort in Wichita. Just a guess.
As far as the scientists in Nevada are concerned, "chronic fatigue syndrome" is of little further import. Let the CDC's finest--Bill Reeves, James Jones and their contractors, the psychiatrists like Chris Heim at Emory--pursue their study of adults with histories of sexual molestation.
"Chronic fatigue syndrome" is over, except maybe in Witchita, in Macon County, Ga. and in Bill Reeves' head.
Overnight, the Whittemore Peterson Institute and its collaborators have turned a 20-year crime story back into a science story.
XMRV, the fourth human retrovirus (HIV was the third) is the first infectious human retrovirus to be linked to disease in twenty-six years. In September, Ila Singh at the University of Utah reported in the Proceedings of the National Academy of Sciences that XMRV could be found in the tumor cells of the most aggressive prostate tumors. Earlier, in April, this infectious pathogen was found in human semen. Could XMRV, like Human Papilloma Virus, be a sexually transmitted infection that causes cancer? They're working on it.
The virus was discovered by Robert Silverman, a cancer biologist at the Cleveland Clinic's Lerner Research Institute, in collaboration with Joesph DeRisi and Don Ganem of the Howard Hughes Medical Institute at UCSF in San Francisco. The group reported their discovery in February of 2006. XMRV generated tremendous interest among virologists, but raised hardly an eyebrow in the mainstream press until now beause it had yet to be definitively associated with any specific disease or diseases. Silverman is also among the network of scientists who collaborates with investigators at the Whittemore Peterson Institute.
XMRV is a gammaretrovirus, as opposed to HIV, which is a lentiretrovirus, from the Latin for "slow." Lentiretroviruses may take years to cause symptoms after infection. Not so gammaretrovirues. They've long been known to cause neurological disease, cancer and immune deficiency in animals. Until 2006, scientific dogma held that gammaretroviruses infected only amimals.
XMRV has been in the human population—and we can assume, in the nation’s blood supply--at least since 1984. Mikovits found XMRV in a sample of frozen blood that had been saved by Dan Peterson as long ago as 1984. The blood happened to have had been drawn from a patient who went on to die of mantle cell lymphoma, another disease XMRV is suspected of causing.
Today, there are an estimated one million people sick with XMRV-associated neuro-immune disease in the United States and ten million infected, or 3.7 percent of the U.S. population, with a virus of "unknown pathogenic potential."
Given that Dr. Mikovits, her team at the Whittemore Peterson Institute, and her colleagues at the National Cancer Institute have determined a human retrovirus may be at the heart of this disease, the failure of the Centers for Disease Control to respond professionally and rationally when presented with a novel retrovirus in patients and their close contacts in 1991 by Elaine De Freitas of the Wistar Institute needs to be revisited immediately.
We’ve known since early 1996, when Osler’s Web was published, about the CDC’s fiscal malfeasance and lies to the Congress and, in partnership with the organization CAA, to the public, as regards this disease. We’ve monitored the agency's willful ignorance of—indeed, their extreme hostility to—the science in this field. We’ve recognized their propagandistic agenda. We’ve never lost sight of their bio-ethical failures. But if it turns out their failure to replicate Elaine DeFreitas’s findings of a novel retrovirus in this disease, followed by their attempt to destroy her professional reputation, was purposeful, or even incompetent, then the multi-billion dollar complex of buildings in Atlanta known as the CDC is as much a crime scene as it is a federal science agency.
Indeed, in light of the Science study released today, what may have seemed like sheer incompetence and political maneuvering in the early 1990s needs to be re-examined by the U.S. Congress. It’s not a minute too soon to utter the words, “Class action lawsuit,” either.
Maybe the real question now is, Who will inherit the scientific real estate that used to be the CDC?
I hear my mother scolding me that this is not the day for bickering and pettiness--but, I can't help myself: If you ever needed evidence of the true nature of the CFIDS Association of America, the McCleary/Vernon shop in North Carolina, observe closely how they respond to this finding. Will they call for a congressional investigation of the CDC's handling of this epidemic? Or will they be CDC apologists? Will they admit to the fact that DeFreitas had to end her work in this field because the CAA decided to pull the plug on her funding? Will they assure patients there is still no evidence for transmission? Will they admit to the tragic waste of research dollars during the last 25 years, a phenomenon they participated in like pigs at the trough?
More recently, CAA used $35,000 the NIH gave them and held a meeting at the Banbury Center. Another snooze fest. As recently as October 1, 2009, or eight days ago, CAA published their conclusions from Banbury: among those conclusions, there was "no evidence for retrorviral infection" in this disease.
To cap it off, when they learned of the Whittemore Peterson study and its imminent publication in Science, Kim McCleary and Susanne Vernon chose to violate a strict scientific embargo and sent copies of the paper to members of their board. The move can be construed as contempt for scientific protocol and disrespect for the scientists who labored to deliver this work. In the future, watch them gyrate and twist to find a way to claim this discovery, however indirectly, for themselves, to use it to promote their organization and to raise money for themselves. And if they can't claim it, I imagine they're going to start trashing it. Twenty years out, these folks are just so predictable. Is it time for a clean break with the haunting, failed agendas and strategies of the past? Isn't some part of success in life knowing the difference between your friends and your enemies?
History is shifting. The pundits, the people who are paid to ask why, will finally ask the questions they should have asked twenty-five years ago: why medicine is so obtuse, its practitioners so willfully ignorant. How could our government and the governments of other nations dismiss and then ignore millions who suffered from “An infectious disease of the brain,” as Hilary Koprowski of the Wistar Institute called it publicly in 1992. Koprowski was an expert in neurological diseases—he knew one when he saw one.
They will talk about the dangers of scientific bias and the strange, near-criminal manner in which a disease could be defined, for so long and in spite of so much contrary evidence, as a personality disorder, its victims whiney yuppies who were, in the words of Johnny Carson, “too tired to tie their sweaters around their necks.” Carson never knew how close he got—the part about the sweaters? Slam dunk.
Mikovits and her collaborators may have changed the course of medical history. This discovery may lead in many important directions, explaining, for instance, why immune system cancers—lymphoma and leukemia—have been on the rise for the last twenty years. It may explain why inflammatory cancers of the breast, prostate and pancreas are becoming more common, too. And it may explain autism, atypical MS, and fibromyalgia—even amyotrophic lateral sclerosis. Certainly, it has very probably explained the pathophysiology of our disease. Why we are riddled with co-infections—herpes viruses, enteroviruses, mycoplasmas. Why we have NK deficiencies. Why we have encephalitis. Why we get lymphoma, thymoma, and acute lymphocytic leukemia. Why we are sick for decades, not days.
Word spreads fast these days and secrets are hard to keep, especially secrets as fascinating as this one. Science was forced to move up their publication date, originally set for October 16th, due to the rumors and gossip on Internet chatrooms, blogs and websites that began two weeks ago. The news was spreading virally, if you will. With over a million Americans sick, this news was never going to be secret for long.
Let’s make sure this horrific chapter in medical history is not forgotten. The years of our lives during which thousands of research papers were written by psychiatrists or wanna-be psychiatrists purporting to explain away a life-destroying disease with discussions of personality disorders, exercise and activity phobia, malingering, hysteria, stress, sexual abuse, school phobia, Type A behavior, attention-seeking behavior, and any other kind of behavior, must be respected, the papers saved for posterity. Princeton English professor Elaine Showalter’s book equating this disease with fantasies of alien abduction probably deserves its own shelf in this pantheon of the grotesque. And, rest in peace—if you can—Stephen Straus, father of the movement. All these works will be examined, in time, by researchers who seek to understand the human capacity for delusion, ignorance and greed.
Sometimes, music is enough.
Comments
Thanks for your post today, I laughed, cried and raised an eyebrow. CDC, you're dead.
Sounds like you will have some work on your hands, another update for Osler's Web is needed :-)
Best regards, Kati
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders.
Physicians fixated upon the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a mental defect or psychological condition known as "Doctors with Unexplained Medical Beliefs": D.U.M.B.
DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: "Medicalingering" or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: "Factlessitious Disorder".
Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities.
Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution:
"Psychosomatization Fixation Disorder" or "Psychologizing" is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.
DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Unmistakable Physician Intelligence Deficiency: "S.T.U.P.I.D.", as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into "psychologizing" by unfamiliar symptoms and complaints.
An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.
-Erik Johnson
Incline Village CFS survivor
may be reposted
Yes, I cried, especially for the future of my 21 y.o.
granddaughter, which has seemed so bleak until now.
My second thought was for Elaine DeFreitas, so I
looked her up in your first edition of Osler's Web,
and there she was, on page 680, in 1995 still confined
to her home in FL, and on page 681, wishing she had
sent her discovery to Gallo or Poiesz (the HIV and
HTLV experts respectively, of the time. On page 682
she said, "...And suddenly i could see myself twenty
years from now, when I'm a high school teacher and
someone calls and says, 'Hey, they just found a
retrovirus in CFS.' And maybe that'show it will
happen. And I know how I'll feel-I'll feel great."
I hope someone made that call to her. I hope she
knows she will never, ever be forgotten, I hope she
is crying like me, with tears of joy. Joy for her
vindication, joy for her (hopefully) peace of mind
now...and as one of our heroes, joy for all of us.
Thank you for reminding of of Vietnam and our own
story, and that we should never forget.
p.s. Eric, I may die laughing at DUMB and STUPIDITY!
Do you think Guantanamo has really shut its doors for good, though? You'd think Kerr's work on genetic subtypes would have gotten people to realize the smart money's on biomedical research, but that didn't happen.
I desperately want you to be right. Is there something I'm missing?
http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional
I'm suprised there wasn't some sort of 'jolt' as the world flipped on it's axis and turned back to right side up as you say Hillary. I'm so excited - I can't really put it into words!
It may seem very silly to be so happy at probably having a retrovirus - but this has made my decade.
I can't help thinking that some of my colleagues behave like David Irving. Denial of evidence etc. Will the British Journal of Psychiatry help to perpetuate this kind of sloppy thinking? Given the Science paper as well as the other evidence of pathology in subsets, psychiatry will look very stupid if they do. See also the misrepresentation of the CFS world in the current issue of the JRSM (Author: S. Wessely). I've submitted a response but the editor is CBT school and they're not into debate and respect for alternative views.
We are survivors. We should feel proud that we're still here despite all the the efforts to misrepresent our illness and our views.
"Do I try to fight this or suggest that, in fact, we at the CDC were on to XMRV, as well. Hmm... At least I can muck things up by 'trying' to replicate their findings using a catch-all definition of CFS sufferer..."
My understanding is that the national CFIDS Association attempted to find evidence of retroviral activity and failed. We should know whether this is similar to DeFreitas's retrovirus - she must've had some markers for it. Since we haven't heard anything on that score I assume it is not. I would note that scientists outside the CDC could have continued to attempt to replicate her findings and no one did.
Otherwise thanks for an excellent blog.
Some of Reeves' comments so far:
from Nature
"William Reeves, principal investigator for the Centers for Disease Control and Prevention (CDC)'s CFS public health research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS". But Reeves is cautious. "Until the work is independently verified, the report represents a single pilot study," he says. According to Reeves, the CDC is already trying to replicate these findings. He also notes that CFS is a heterogeneous disease and likely arises from a combination of many factors."
From LA Times
""It is almost unheard of to find an association of this magnitude in any study of an infectious agent and a well-defined disease, much less an [ill-defined] illness like chronic fatigue syndrome," he said in an e-mail. It is extremely difficult to prove causation with a ubiquitous virus like XMRV, and it "is even more difficult in the case of CFS, which represents a clinically and epidemiologically complex illness," he said."
"Unfortunately, Reeves said, the major flaw of the study is that there is not enough information about how subjects were selected to rule out any bias in choosing them."
Paula Carnes
Today we are a part of very significant history and it's so good to see your still right in the middle of everything. A Class action lawsuit against the CDC is indeed overdo.....so is our joy at finally getting some hope and justice. Thank you for always being here with us Hillary.
Ross Radcliffe, RN
Reeves has wasted no time jumping all over these findings - as usually, inaccurately. He told a reporter that HMRV was "ubiquitous." UBIQUITOUS??? The 3.5% they found in the normal group was higher than expected, but hardly ubiquitous. These were not isolated researchers with little political clout - as the spokesperson for CDC, he went on the attack against researchers at NIH (NCI).
This is, I am even embarassed to say, just the end of the beginning. There is so much work to be done, so many people to be identified and treated. Ironically, our new ally will be the Big Pharmaceuticals, who must see this as a potential gold mine - our enemies, as always, the insurance companies, will try to find ways to avoid having to pay for this, and we are going to need recognition at social security. The CFSAC meeting just got very interesting.
Thank you once again Hillary - and you'll know what I mean, Jill (New Zealand)
Please, please, let this be the beginning of an end to our suffering. I want the old "me" back-I miss her, her energy, and her intellect.
>far are too small to conclude anything about the cause of chronic
>fatigue syndrome. "It's spectacular but needs replication. And I
hope
>that no one is thinking of prescribing anti-retrovirals on the
basis
>of this," said Simon Wessely, professor of psychological medicine
at
>King's College London. "It's very preliminary and there no evidence
>to say this is relevant to the vast majority of people in the UK
with
>the condition."
Oh Simon message from WPI website
Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don’t understand the disease? [view answer...]
Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient’s experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were “real.” Unfortunately, many in the scientific and medical fields have not learned from their past mistakes.
The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response inc, which result in chronic immune activation and immune deficiency.
We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.
This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others
ans Simon message from ME ( Irene Thorpe) GET lost
And it would also be productive to find out how CDC NCI NIH and clinical medicine could be so troubled and frustrated. It would also be productive to analyze the insurance company mistakes. We have an opportunity to fix a lot here. We probably have to avoid litigation in order to really find out what went on. Litigation would shut down any productive inquiry.
distraction and while they were doing this we have been unknowingly giving this to
others..They should be investigated for Crimes against Humanity.
I have been sick since 1982, the human spirit can adjust and I have but what I have
lost is immense but we are amazing people to have survived all these years with
ridicule from doctors, friends and lost families.
I'm very proud to be counted as a member of this community.
..Survivor
All these researchers are saying is that a lot of sufferers seem to have this virus, just as a lot of us have all these other infections. This tells us nothing about the root cause.
vindicated and filled with hope that I had none before this day.
Thank you for the wonderful book which helped me understand all the beauracracy behind ME/CFS when I fisrt struck by ME/CFS in late 93.
The person you know of was not the only person who gave up all hope and died from assisted suicide because of ME/CFS. A dear friend also died the same way last November, for being bedridden, totally paralysed for 17 yrs since she was
16. Her mom is now facing trial in UK which will happen in January 2010.
I could dance all night because of the hard work by the team of reaserchers. Yay.
Sincerely,
As for it being a sexually transmitted disease, in my case it would not be the case as when I got CFS I was not and never had been sexually active. I do believe though it can be transmitted through saliva possibly.
Does this mean though if these finding prove to be correct that we can actually infect other people? I hope not as this would be very worrying.
Reading this leaves me a little hopeful as maybe if these findings prove to be significant then we can actually hope for a treatment of this awful awful condition. I really hope and pray that one is found.
The idea of all those "experts" saying "it's all in your head" having to eat it thrills me! I proposed the theory of "H.I.V. Light" in February 2008 and no one listened. Guess how I feel now. Science will triumph!
If we were rejected like lepers now it can be pure panic and open social rejecion.
I hope they are being honest because we have only seen dishonesty or exaggeration or half trues so far in every actor in this play. If this receives global publicity we will for sure suffer this super stigma and fate with no benefit unless finding a cure, and I definetely would prefer to have the stigma of mentally ill rather than this. I for one will keep this for myself and not tell anyone. I will follow the news and if it becomes available, will take the taste and treatment, but in total silence and denial in front of the others. If any I will say it was a toxic disease that I cured by chelation.
- Mary M.. Schweitzer"
While I agree that this is interesting news, and will definitely make the next meeting 'very interesting', I completely disagree with her conclusion that Big Pharma will be our 'new ally'.
They have never been an ally into finding a CURE for any disease, much less one so complex as CFS/ME/CFIDS...whatever one wants to argue the name should be. Sure, they will try to promote expensive drug combos with (sometimes) nasty side effects that work only temporarily, then need to be taken daily...hence the reluctance of insurance companies to pay for them...but no actual cures. That would put them out of business.
And no I don't work for an insurance company, I'm disabled with this #@!!! 'syndrome' like all of us here.
But I just don't think that this will be any different, or at the very least, think that people shouldn't get their hopes up too high. The CDC will claim they're going to replicate the studies, and then 3 years later will come out with results that showed they couldn't be replicated, just like last time.
We've become so conditioned to expecting a drug or drugs or our doctors to do all the work, when as in Erik's case, he had to make changes and did make changes, and now has his life back.
And there are other people with even severe ME/CFS/CFIDS, even though it is extremely rare, have actually recovered or are recovering. But they did so by addressing environmental exposures, pesticides, heavy metals, and many other multi-factoral issues.
Then again, maybe this IS indeed "the" cause in a majority of cases. But not in all cases.
"They" have been trying to say chronic Lyme disease (my field) is a MUS (medically unexplained syndrome) so I thought I would check MedLine to see how chronic fatigue was doing in the past 10-20 years since "they" destroyed DrFreitas' work. And all I could find was "somatoform disorder" - nothing about any infectious etiology. So this news is thrilling. It also is exciting for people with Lyme disease who have received psychiatric labels (and whom drs refuse to treat with antibiotics).
The other interesting thought is that XMRV is a murine retrovirus. How does a mouse retrovirus get into a human? One possibility is, tick bites. Only a small percentage of people bitten by tick realize they have been bitten.
The British Journal of Psychiatry did not publish my e-letter noting that CFS IS included in ICD-10. I have now written to the journal to note that they have a duty under the COPE guidelines to correct factual errors when these are pointed out to them. (I added a sentence about the 'denial' of CFS seeming rather silly in light of the published evidence of pathology, as in Science and the Independent newspaper that day).
I also wish to clarify something, as I've noticed in posts and books that some perceive me as a patient activist rather than a psychologist. I don't see myself as an activist. I don't put myself forward for committtes e.g. the MEA, or submit info to enquiries. I'm a psychologist who believes in good science and am uncomfortable seeing colleagues mislead because of a lack of sound information and objectivity. If I can help to reduce distress and limit interference with the scientific process, I'll do what I can, as any other professional.
As a patient, I have my views on the politics of CFS, but expressing a view doesn't make me an activist. It makes me a patient who sometimes expresses an opinion and offers ideas to other patients e.g. on independentME. Which is not to say that I am opposed to activism. I admire many activists (Invest In ME for example). As I like accuracy, I don't wish to be misrepresented, hence the above. You can be a psychologist who is critical of the CBT model. SW please note.
My ideas on ME are getting through. The research emphasising the severity of ME, the papers on the flaws of the CBT model and the alternatives to CBT/GET are increasingly being cited in theses and journals, so they are there to be considered by colleagues.
The recent award of a fellowship was largely for my work on ME (Ramsay-defined). That again, is an indication of a shift; an increase in interest in ME. They wouldn't have recognised work on a non-entity; a belief system shared by the uber gullible, a Western excuse for those who don't wish to admit they're stressed. (I expected my years criticising the CBT model to count against me but it obviously didn't). For those who live outside the UK, bar a DSc, a FBPsS is as good as it gets.
Don't be too demoralized when you read the latest papers from Reeves et al. There is a rebalancing act going on. Another example. There are now interventions for PWME based on the medical model and an influential psychiatrist (CBT schoolish) recently asserted in a peer review journal that these were now the 'best option' for patients. Progress is painfully slow but every now and then, you see a light.
We don't often work with activists, especially in public, and I've been personally advised not to, but perhaps this is an area that might be reviewed. I'm certainly happy to talk to anyone and help devise strategies etc. I don't think that would cause issues with my colleauges.
Letter to JRSM was also not published. No surprise there.
THE REULTS OF MY ANTIVIRUAL MEDICINE
I read your reporting on the CDC right before I responded to the CDC request for public input on a CFDS plan in June. I think I pasted this to your blog at the time, but it was when you lost some comments. I am pasting my
email to the CDC below so you can see what an inspiration you have been:
Dear CDC-
I apologize if whoever finds this email is a recent hire in the CFS research department of the CDC. Don't take the following personally. If you are one of the
lazy inept researchers who have been sucking on the teat of CFS research for the last 24 years, this letter is meant for you.
What has CDC been doing for the last 24 years?! I lost 10 prime years of my life to
this disease, my son has ASD which appears to be directly related to CFS, and my cousin is dying from the late stage of an untreated CFS illness. Multiply my
personal experience by the millions of people affected. If the CDC had done anything to help advance the knowledge of CFS, maybe some of this wouldn't have happened. I
challenge you to name one positive contribution the CDC has made to CFS research.
First in your plan, I think you need to apologize to the American public for taking taxpayer money for twenty five years while ignoring science, playing politics, and
f------- off. Since the decisions at CDC regarding CFS appear to be made by arrogant Dr's that will never see a real patient or admit previous mistakes, I am not going
to hold my breath waiting for this. At the least, you should decline any new funding related to CFS. There are worthy Dr's and other institutions that will make
headway in this disease, whether CDC is there to impede them or not.
Sincerely,
Doug Gawoski
San Rafael, CA
He might then decide he would like to go to Emory immediately and continue his CBT and GET on patients who may (or may not) benefit from it; however, the truly sick M.E. patients would have to be looked at more closely by their own physicians, as 'cfs' would no longer even be a valid term to use for any condition whatsoever.
Brain cells not synapsing well, so hope someone else can think more logically about this..
Strength to you all,
Kathryn Stephens
I spend my days researching my illness with my computer propped on my chest. When I hit another brick wall, I try so hard to return to filling my head with "uplifting" thoughts and images. I try hard to put on a cheerful face and enjoy small blessings. I leave my darkened bedroom about every four months, in a wheelchair, with my head covered and with earplugs. I've never been depressed a single second, although doctors have tried to convince me that I am.
I refuse to give up. I honestly believe that I might get well tomorrow. When I dream, I can still walk. I'm a blithering optimist and that unhinges my family who secretly pity me. I am a mere shell of who I once was. But I'm in here. I've been hoping and praying for this day. As someone said, "the first day of the rest of our lives". So true.
I went to the Mayo (9 days) and got kicked in the face. They had the audacity to laugh (yes!) at me as did the OHSU Parkinson's Clinic. No one knew what I have--MS, ME, Cerebellar Ataxia--lots of theories but no diagnosis, no cure. Doctors would look at my MRIs, my spinal taps, and say "Heck, there's something really wrong, but we don't know what it is." You all know how heartbreaking that was. My husband cried far more than I did. He wants me well so badly.
Is it just my conspiracy theorist addled brain or is it odd that I have this horrid illness, my eldest birth son has MS and bipolar, my two other birth sons have bipolar, my bio granddaughter has autism and bipolar? Two of our neighbors just died from Creutztfeldt-Jakob Disease. Another 29 year old neighbor just developed Parkinson's. Four other neighbors have MS. All these neighbors live within 250 feet of my bedroom. One of our adult adopted daughters (thus, no blood relation) was just diagnosed with Behcet's Disease.
Our dear friends are a family of four. Three are sick. They have Type 1 Diabetes, MS, and Autoimmune Lymphoma.
Add to this the animal mysteries. We've done small dog rescue for years so I won't include dogs who came to us disabled or ill. But of the dogs adopted as puppies (just in the last 10 years), we've experienced thrombocytepenia, intractable epilepsy, Cushings Disease (3 dogs), and diabetes (2 dogs). As I write this, I am surrounded by seven little dogs on my bed. Did I get sick from them or did they get sick from me? The WPI study mentions that XMRV is known in animals.
Am I being paranoid to worry? Everything I just listed occurred over a period of ten years at the same location in a bucolic village in the Siskiyous. It should be utopia but it's been hell.
Until this week, when someone parted a curtain, and suddenly, I could see
some hope. Will we get answers? Will we get help? I'm up here, waiting.
Thank you Hillary for writing such a fabulous and celebratory piece for all of us. I think we've earned a day in the sun.
Shelley Linsday
Ashland, OR
So it was all down to infection after all how many more diseases will be impacted by this research?
Could it be that it is a co infection for some of lyme disease sufferers, so many parralles. Mice are after all competant hosts for borrelia as well as XMRV and so many Lyme Disease patients get prior diagnosis of ME/CFS/Fibro.
Many improving on antibiotics but only to a point.
One could feel sorry for IDSA so much to consider with their Lyme Disease review perhaps this will teach them to be cautious in saying nay to Chronic Lyme Disease.
Corante
http://pipeline.corante.com/archives/2009/10/13/chronic_fatigue_retroviruses_to_blame_or_not.php
Today, Derek has published a commentary around the W-P XMRV paper.
He's switching back and forth between "chronic fatigue" and "chronic fatigue syndrome" and at one point he writes:
"One of the problems in this area has been defining who's a patient and who isn't. It's a bit of a catch-all diagnosis, or can be, so there's always the suspicion that even if there's a solid underlying cause that the data are hard to dig out of a heterogeneous patient sample. And there's the whole psychological-or-physical question, too, which is a sure route to raised voices and waving fists. My thinking is that there are very likely a number of people with other issues (which I will leave undefined) piled into this area, and that the necessary attempts to draw boundaries will be sure to leave someone upset."
I've left a comment (not published yet) pointing him in the direction of the paper's "Supporting Online Material" on the Science site which sets out that the "1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome (S1) and the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe disability" were used.
Derek also writes:
"But we're not quite there yet. No one's seen the data yet on that 300-patient cohort mentioned above, and it's not clear if a different diagnostic method was used on them compared to the group in the Science paper. And that paper itself doesn't have enough details on the patients to satisfy some readers - a specialist at the CDC complained about this to the New York Times, and said that his team would try to reproduce the results, but that he wasn't hopeful. (Working on chronic fatigue has not been the sort of thing that breeds a hopeful outlook, to be sure). Other researchers in the field have voiced their doubts to Science (who, to be sure, did accept the original paper)."
Have a look at his commentary. Is there anyone here who might feel disposed to provide Derek with some backgound to the political issues around Bill Reeves, the CDC, and the issue of Reeves and the broadening of criteria, either as a comment on his blog or direct (his email addy is on his blog)?
Suzy Chapman
from NYT
"The study received a mixed review from Dr. William C. Reeves, who directs public health research on the syndrome at the Centers for Disease Control and Prevention. He called the research exciting but preliminary, and said he was surprised that a prestigious journal like Science had published it, because the researchers did not state the ages or sex of the patients and controls, or describe the duration of the illness or how it came on.
“If I don’t know the nature of the cases and controls, I can’t interpret the findings,” Dr. Reeves said.
“We and others are looking at our own specimens and trying to confirm it,” he said, adding, “If we validate it, great. My expectation is that we will not.”
He noted that there had been false starts before, including a study in the 1990s linking the syndrome to another retrovirus, which could not be confirmed by later research."
"Not so gammaretrovirues. They've long been known to cause neurological disease, cancer and immune deficiency in animals. Until 2006, scientific dogma held that gammaretroviruses infected only amimals."
The issue is that retroviruses have been known to infect animals. We have no info yet on XMRV and animals, as far as I know. It would probably be best to remove that one sentence of mine to prevent any confusion. I'm so sorry I didn't check my facts more carefully (I was excited).
The issue of pets and other domestic animals, though, is still huge. I've actually learned more about autoimmune diseases from our vets than from medical doctors.
Shelley Linsday
Ashland, OR
Great work as usual!!! Keep going Hillary!!!!
PLEASE!!! I know we all have serious financial problems BUT, if you have a few extra dollars go to the Whittemore-Peterson website and DONATE to them so that they can continue making progress at Mach Speeds! We know the CDC/Reeves will continue to do nothing except demean us, so we must support those that are helping us -- and our families (e.g. spouses, kids, grandkids, nieces/nephews, etc).
MY Husband got sick four years ago after living with me and my CFIDS for 11 years. I believed from the start of my now 15 year illness that this was a contagious disease and so I kept my face/mouth away from my new niece. I am so glad I did. But my poor husband got sick and is now stuck to the couch and not working his typical 14 hour days. His illness hit hard and fast. Contagious? Of Course it is!!! And the CDC KNEW it is/was a contagious disease all those years ago.
It was on their front online page for about 2 days, Oct 12 &13.
The comments from the odious head of the CDC are shockingly insentive,and he goes on
to knock the journal in which the XMRV is published. I'm not medico, but I
understand the journal is among the highest regarded by in the medical community.
Here's hoping the class action suit mentioned on this blog goes ahead full steam.
I don't want money. Just revenge for myself and all the other CFS patients whose
lives flowed by as they did nothing.
Cheney when recently commenting on XMRV said: "Proper buffering of the redox set point for the human body's biological terrain
is critical to control intracellular viral replication. Oxidative stess will
potentially amplify XMRV replication...Factors that are highly oxidizing include diets high in meats, sugars, fructose, processed foods, allergic foods, fish oil in the special case of CFS, environmental exposures and especially mercury (Sushi) or dirty amalgam extractions or cracked amalgams and immune activators such as vaccinations and echinacea, mold, stress or chaos in your life, heavy exercise, excessive heat or cold and EMF."
That sounds like 'a combination of many factors'.
Dr Richard Sykes PhD, whose CISSD Project has informed the revision processes towards ICD-11 and DSM-V, undertook his Project in the name of the ME patient community under the misconception that chronic fatigue syndrome is not included in ICD-10. (Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index, at G93.3.)
The CISSD Project involved a considerable number of influential researchers and clinicians from the field of liaison psychiatry and psychosomatics. Their names are appended.
In his December 2007 Final Report to CISSD Project Administrators, Action for M.E., (a report which only saw the light of day a few months ago), Dr Sykes had written:
"Is CFS/ME classified as a neurological or as a mental disorder in ICD-10?
"CFS and CFS/ME are not listed in ICD-10* and of the 4 related conditions that are listed (post-viral fatigue syndrome, benign myalgic encephalomyelitis, neurasthenia, fatigue syndrome), 2 are listed as neurological disorders and 2 as mental disorders. On the one hand “post-viral fatigue syndrome” is classified as a neurological disorder with the code number G33.3 [sic]. In CDDG this is said to include “benign myalgic encephalomyelitis”. Although the adjective “benign” has long since been dropped and although most users of the term ME now say that ME should stand for Myalgic Encephalopathy, rather than Myalgic Encephalomyelitis (since there is no evidence of encephalomyelitis)**, this would appear to be a good reason for saying that ME is implicitly classified as a neurological disorder. (Since G33.4 [sic] is the code for encephalopathy, it would seem that this code rather than G33.3 [sic] is now the more appropriate code for ME.***)
[Ed: *This statement had to be revised by Dr Sykes for the "Summary Report" published by the ME Association in June 2009. **Dr Sykes provides no supportive evidence for this statement. ***Dr Sykes provides no medical evidence to support the classification of "Myalgic Encephalopathy" at the same coding as "Encephalopathy" (currently coded in ICD-10 at G93.4, not at G33.4 as the document erroneously states). Dr Sykes has been asked to define precisely what he means when he uses the terms "CFS" and "CFS/ME" in the context of ICD-10 but he has been unwilling to set this out.]
Extract from Summary Report provided to the ME Association, published June 2009.
Appendix B List of consultants [to CISSD Project]
Organising Group (5)
Chairman: Prof Kurt Kroenke, Professor of Medicine, Regenstrief Institute, Indianapolis, USA
Co-Chair (UK): Prof Michael Sharpe, Professor of Psychological Medicine, Edinburgh Univ
Principal Collaborator: Prof Rachel Jenkins, WHO Collaborating Centre, Institute of Psychiatry, London Univ
Project Advisor: Prof John Bradfield, former Professor of Histopathology, Bristol Univ
Co-ordinator: Dr Richard Sykes, Hon Visiting Research Associate, Institute of Psychiatry, London Univ
“Active” Consultants (28) – who attended one or more of the three workshops or were significantly involved in discussions or publications.
UK (10)
Prof Derek Bolton, Professor of Philosophy and Psychopathology, Institute of Psychiatry, London University
Dr Richard J Brown, Lecturer in Clinical Psychology, University of Manchester
Frankie Campling, Patient Representative, Oxford
Dr Rachel Cooper, Lecturer in Philosophy, Lancaster University
Prof Francis Creed, Professor of Psychological Medicine, Manchester University
Dr Richard Kanaan, Clinical Lecturer, Institute of Psychiatry, London University
Prof Richard Mayou, Professor of Psychiatry, University of Oxford
Dr Ruth Taylor, Senior Lecturer in Liaison Psychiatry, London University
Professor Michael Trimble, Professor of Behavioural Neurology, Institute of Neurology, London
Research Assistant Natalie Banner
USA (7)
Prof Arthur Barsky, Prof of Psychiatry, Harvard Medical School, Boston, Mass.
Dr Charles Engel, Assoc Prof of Psychiatry, Uniformed Services University, Washington, DC
Prof Javier Escobar, Prof of Psychiatry, Robert Wood Johnson Medical School, New Jersey
Prof James Levenson, Prof of Psychiatry, Medicine and Surgery, Virginia Commonwealth University, Richmond, Virginia
Prof Kathryn Rost, Prof in Mental Health, College of Medicine, Florida State University
Dr Robert C. Smith, Prof of Medicine and Psychiatry, Michigan State University, East Lansing, Michigan
Prof Mark Sullivan, Prof of Psychiatry, Washington University, Seattle
Germany (4)
Prof Dr Peter Henningsen, Prof of Psychosomatic Medicine, University Hospital, Munich
Prof Dr Wolfgang Hiller, Psychological Institute, University of Mainz
Prof Dr Bernd Löwe, Director, Institute for Psychosomatic Medicine and Psychotherapy, Hamburg
Prof Dr Winfried Rief, Professor of Psychology and Psychotherapy, Marburg
The Netherlands (5)
Dr Ingrid Arnold, Department of Public Health and Primary Care, Leiden University Medical Center
Dr Veronique de Gucht, Department of Clinical and Health Psychology, Leiden University
Prof dr Stan Maes, Professor of Health Psychology, Leiden University
Prof Dr Philip Spinhoven, Faculty of Social Sciences, Leiden University
Dr Margot de Vaal, Department of Public Health and Primary Care, Leiden University Medical Center
Denmark (1)
Prof Per Fink, Professor of Psychiatry, Aarhus University Hospital
Norway (1)
Dr Kari Ann Leiknes, Research Fellow, Institute of Basic Medical Sciences, Oslo University
“Advisory” consultants (11) – who have offered helpful comments and suggestions.
USA (7)
Prof Caroline Doebbeling, Research Scientist, Regenstrief Institute, Indiana University School of Medicine, Indiana
Dr Michael First, Research Psychiatrist, Biometrics Research Department, New York State Psychiatric Institute, New York, NY
Prof Robert D Martin, Assistant Professor of Psychiatry, Albert Einstein College of Medicine, Long Island Jewish Medical Center Campus, New York, NY
Prof Christian Perring, Associate Professor of Philosophy, Dowling College, Long Island, NY
Dr Claire Pouncey, Cornell Hospital, New York, NY
Prof Jennifer Radden, Professor of Philosophy, Massachusetts University, Boston
Prof John Z Sadler, Professor & Director Undergraduate Medical Education, Dept of Psychiatry, UT Southwestern, Dallas, Texas
UK (2)
Prof Bill Fulford, Professor of Philosophy and Mental Health, Warwick University, Coventry
Prof Peter Campion, Professor of Primary Care, University of Hull
Switzerland (2)
Prof em Dr med Martha Koukkou, University Hospital of Clinical Psychiatry, Bern
Prof Norman Sartorius, WHO Expert Advisory Council, Geneva
[Ed: Michael Sharpe, Arthur Barsky, Francis Creed and James Levenson have been members of the APA DSM-V Somatic Distress Disorders Work Group since 2007. Javier Escobar is a member of the DSM-V Task Force and acts as a consultant to the Somatic Distress Disorders Work Group.]
The Review paper published by the CISSD Project leads in July 2007 (J Psych Res), which has been submitted to the DSM Revision process and the ICD-10 Revision process, around proposals and recommendations for the redefining of the classification "Somatoform Disorders" includes no reference at all to existing ICD-10 classifications for chronic fatigue syndrome and ME in ICD-10 Chapter VI and barely a reference to WHO.
Yet this Project was called the "WHO Somatisation Project" by Action for M.E. and was intended, they state, "...to help lobby the World Health Organisation for the recognition of M.E. and its re-categorisation as a physical illness."
Action for M.E. has yet to explain what it understood by that statement...
Different triggers-one cause.
I became ill in my early 20's and just turned 50, basically I lost my whole life to this disease. I am hopeful with this new discovery other young women (men) won't end up losing their whole lives to a disease that no one believed existed. I realized the other day when I went to a new DR that I didn't even mention that I had CFS, why bother. I just get them to fill my prescriptions for "depression" and move on. The CDC is a joke and I'm sure they are doing everything possible to "down play" this and prove the research not to be valid. Since no one was really dying from the disease it was never taken seriously, because the deaths that occured were suicide which of course meant it was all "mental" :( My optimism is still pretty guarded, but maybe that's just because I'm so tired. Praying things move quickly.
Dr. John Coffin wote
If antiviral drugs make patients improve, that will also help make the case against the virus, he said
In my foggy brain I thought that should read make the case for the virus, not against. Against the virus implies it's not the virus but I'm probably wrong on my english.
I actually talked to an enormous law firm which does class action and through a connection got to talk to their lead class lawyer and he wasn't positive about suing anyone over what we've been through. He especially zeroed in on arbitrary use of funds by CDC, no cause there that they pulverized us. The only suggestion he had for the patient advocate groups were to lobby congress for the injustice done to us. CDC, Congress, doctors, there is a tone that was set that that put us in the penalty box of life. I knew I wasn't nuts, that it was a virus, but listening to 10 doctors tell me it's all in my head at least I held my dignity in my own mind and as they were spouting their vile I was saying to myself, man - you the doctor are nuts.
Regards,
the time these last 25 years. I started out mad and that gave me energy which I
lost gradually (being "lazy" and all, ya know?) and now, n o w . . . will I get my
retirement from the job I couldnt keep any longer because of my 'fake' illness? How
can these people in government even want to be seen in public with this information?
(of their families even want to look at them). Walter Gunn, had I known ...thank
you thank you thank you from thousands of us who have suffered and lived in totally
poverty for many many many years...and in memory of those who couldnt....just one of
'the' group....ps, also in the medical field at one time..
The ones who will benefit from this will be the pharmaceutical companies who can then profit from CFIDS like they do from AIDS by filling us with retroviral drugs.
My question here is....why these folks are getting so much press when the NCF received none for their findings of the PIV5 link, the loss of STAT1 function which allows for the infection and replication of all sorts of organisms,and the finding of a biotoxin which reacts to ciguatera testing in these patients? These are significant findings. Check out their most recent research at www.ncf-net.org
Again, this is interesting but I doubt it is the answer....just like Epstein-Barr wasn't, HHV-6a wasn't and the mycoplasma wasn't, etc.
I am a suffer, too. I wish this was the answer. I just don't think it is!!And I am tired of false hopes.
This recent XMRV discovery goes well beyond some general findings. Yes there are many infections found in immune compromised patients and correlation does not equal causation. But there still may be a cause. These scientists and researchers know what to look for, where research should go and more important, how to interpret it. Researchers are usually very conservative and cautious and for such strong statements it should be taken much more seriously. These are high profile researchers from the Cleveland Clinic and NCI and our most involved and dedicated researchers such as Bell, Cheney etc have have also been quite impressed and convinced of the significance. To receive such extensive coverage should be taken seriously as opposed to some random or coincidental findings, in spite of all the usual hype, fanfare and overblown promises.
Retroviruses have always been a strong candidate based on the characteristics.
Human herpesvirus six (HHV-6) may still be involved and has long been recognized as an important cofactor in the pathogenesis of AIDS by attacking some of the major defenses of the immune system, such as T cells. It could very well be a similar case for ME(CFS).
It is not really about "dumb" and "stupid" doctors as it is the lack of credible research and direction, and information and education on such matters -- and the superimposed bombardment of misinformation, hype, erroneous claims and spin.
There has been evidence of retroviral infection and seems plausible that Elaine DeFreitas was correct. At the time, the CAA stopped funding her. They have not to my knowledge funded the WPI or any of this research either.
The CAA has been in lockstep with the CDC until very recently. No one has discerned any scientific development that would account for the CAA's very abrupt change from "CDC is wonderful" to "CDC is terrible" - except that the CAA's contract ran out and, well, public opinion was quite obvious so why not try to capitalize. And despite rampant misinformation and claims on some sites, the CAA was not responsible for exposing any CDC misappropriations or malfeasance.
Organizations too often have their own agendas and are more concerned with promoting themselves and their particular viewpoints than in seriously and neutrally representing the illness and the needs of the patients they purport to serve, whether for money or ego. The name of the game is to jump in for any attention or to take credit at any opportunity even when it is completely unjustified. And if they can't take credit then they try to find a way to negate, deflect or even discredit it. It is really pathetic but happens all the time. But think it's become obvious and they've played themselves out. There has been very little support, especially for the "CFIDS" groups.
We are fortunate that the WPI can take the lead and move things forward.
This could very well be the cause. So I would agree that this is where research donations should go - as quickly as possible.
Jill
.
It seems inconceivable that one the most historically significant pieces of movie footage in history could have been misplaced and destroyed.
Yet it happened because nobody took responsibility to see that it didn't.
Not exactly "brilliant".
I haven't seen anyone characterize this malfeasance as anything less than utterly indefensible.
What can one say about an entire medical profession that misplaces a syndrome?
VINDICATED AT LAST!
I have always suspected that ME was caused by an infectious agent. Firstly, because there are the pretty obvious - for a sufferer! - 'relapses', which were mroe reminiscent of something like Malaria in their periodicity; and secondly because I've always had weaker responses to any infectious disease than my sister.
Thus, while ME has been with me for 15 years now, and has destroyed my professional life, it has never been as bad as for other sufferers.
Tnank you, Hillary - and thank you for your outstanding book, which was of enormous help to me when I got it after I'd been 'diagnosed' ...
Now we all can hopefully tell our dsoctors tha we're not mad - and I hope fervently that some cure might now become possible, hopefully for all the younger sufferers, who still have their lives to live!
Now that the tide has turned and the psychiatric-school are finally revealed to be utterly bereft of science, out of touch with reality, AND completely unable to understand their patients clear expressions of physical illness, the only recourse left to the psychologizers is to build up as much backlog as possible that they earnestly and honestly believed in what they were doing, and intended no harm.
There is no excuse left to them except a enter plea of plausible-denial based on "reasonable doubt".
They should be carefully scrutinized as they manufacture their alibis, so the world will someday come to see that their "doubt" was not based on reason.
Nor was it reasonable.
Testified May28th Rita Driscoll,I accused CDC of abuse and neglect for the many children including my son Frankie,he saw 21 Specialists,school would not take cfs seriously they laughed.When I testified I had no fear my son was alive MayoClinics fianl report 5 days chronic fatigue,Left Ventrical Hypertrophy etc..When you see a child suffer and there is nothing you can do that was unbearable.Then DYFS came in short the Principal of school said Mothers Gossip,I am a fighter with ME/CFS myself and my daughter I had plenty to say to HHS.I was so alone in this fight,not anymore Micheal Landon was my 2nd cousin he died of pancreatic cancer my father 84 is alive with cfs prostate cancer his father died of stomach cancer. I can sing again!!
Rita O'Neill Driscoll
Can you please provide a reference for this? I'm very interested in their findings since the Science publication. I see 95% in their press release from 08-Oct-2009 at "http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf" but no mention of 98%. Thank you!
It was great to meet you in London.
My war time analogy goes back even further. Must be feeling my age....
I feel like one of those Japanese soldiers rumoured to be hiding in a Pacific Island after World War 2.
For the past 25 years I (feel as if) I have been hiding in a bunker with only a small radio to listen to. I've heard the news and I am hoping that the war is over but in a way I'm too scared to come out in case I get shot.
We will get there and I am hoping that this time we are safe. Thanks for keeping the troops morale up!
I'm sure you'll either edit this post, or delete it all together. You are incorrect on many issues; for example, your claim that the CAA broke the embargo with regarding to Science's publication, 5 minutes of searching revealed that multiple blogs revealed the possible tie betweeen XMRV and CFS far in advance of its official release. One of the principle investigators spoke about it before it was released by the journal Science:
http://www.oslersweb.com/blog.htm?post=638469
In addition, you might want to read Science's embargo policy:
http://www.sciencemag.org/about/authors/faq/#embargo_faq
Like I said, this post will probably be censored, but you can't ignore the truth...
I only censor posts if they are attacks on other people who suffer from this disease, or if they are incendiary--which of course is a subjective judgement on my part, but my standard is, "would this potentially cause harm to another person?" or, "would this incite someone to cause harm to another person?" Or, third, if comments are so terribly uninformed that I simply do not want them on my website because it drags the whole enterprise down--again, a subjective, aesthetic decision, but my right. In the six months or so that I have maintained this website, I have probably rejected fewer than five comments.
As to truth, I respect it and try never to veer from it.
You apparently do not understand what "breaking embargo" means.
The folks who started chatting about the XMRV finding by Mikovits et. al. on the Internet did not realize they were threatening to undermine a Science magazine embargo on press coverage of the finding. They engaged in speculation, but they had no real knowledge of the Science paper, itself.
And yes, Dr. Mikovits responded, in answer to a question from me in June, that she had found a new virus in "CFS." She would have preferred that I had not asked that question, but she is someone who respects the truth, so she did not lie to me. But there was no embargo to break at the time, because Science had not yet accepted the paper and had not set an embargo.
The staff/personnel at CAA are public relations specialists who understand what an embargo actually is, yet they sent the Science article to their board members before the embargo lifted, breaking the Science magazine embargo.
Believe what you want to believe, but if you don't understand what you are talking about, you might want to hold back a bit. I certainly can understand your desire to remain anonymous.
One of my brothers wrote:
"Without drastic changes in her treatment, I suspect C. will remain an invalid until my mother dies or otherwise becomes disabled with age.
"This doesn’t have to be the case. I believe with psychiatric treatment (drugs, cognitive behavioral therapy, and disengagement from our mother), C. could be living a somewhat normal life within months, as could my parents, who are also more-or-less housebound.
"I beseech you to use your skills and authority to help bring dramatic change
to C.’s care.
My other brother wrote:
" [C.] has blamed several of her “relapses” during the last few years on some of these visits [with us]...[W]ithin just weeks, C. had the first of many so-called relapses or setbacks...
"Our parents’ lives revolve around C., especially our mother’s...When our mother isn’t cooking, she spends hours on the computer, subscribing to various CFIDS and Lyme lists, researching illnesses and corresponding with people who suffer various ailments...
"The [question our father] kept coming back to was: “Do you think [her mother] and I are somehow enabling C.’s illness?” Ultimately, both [my brother] and I said yes...I think she has a variety of anxiety disorders, ranging from generalized anxiety to health anxiety.
"This is absolutely NOT meant to disparage C. or say that it’s all in her head. To C., what she is feeling is very real. I have done a lot of reading on health anxiety (what we used to call hypochondriasis), including the work done by Dr. Arthur Barsky in Boston...and the symptoms certainly fit C. Dr. Barsky is a leader in the field of diagnosing and treating health anxiety, and his studies have been published in JAMA.
"I also think that my mother has Obsessive Compulsive Disorder. To be even more specific, a sub-set called OCR where the “R” stands for Responsibility. You overwhelmingly, and compulsively, feel responsibility for the well-being of another person.
[continued below]
"...I do think there is a co-dependent relationship between C. and my mother. When C. is under the care of my mother, there are absolutely no expectations placed on her...I am again strongly recommending that C. be hospitalized. That is perhaps the only way that decisions can be made by someone other than C. and my mother. It is also a place where C. could be evaluated, observed and psychiatric treatment could be started. For example, Dr. Barsky has had good luck with both cognitive behavior therapy and certain SSRI drugs...
"Essentially, [my brother] and I (and our wives) felt that a change needed to be made, that C. should be hospitalized and that we thought, in varying degrees, that there was a strong mental aspect to the illness. I said that I felt that there had been original physical root causes, but that the mental side had surpassed the physical causes...
"Despite the fact that [my brother] and I repeatedly said we loved our sister and just wanted to do what was best for her, mom at one point told me that I “cared more about my dog than my sister.” (At the time, my beloved dog was dying of cancer. He died a couple of months later.)"
***
It’ll be interesting to see how my siblings spin it if I do test positive for XMRV. Will they continue to press my doctor to put me in the psych ward for my “hypochondria”? Or will they somehow blame our mother for the retrovirus?
As I lie here season after season, watching the world go by beyond my narrow sliver of window, my siblings enjoy excellent health. Each of them has been able to have a career, get married, buy a house and have children.