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Osler’s Web – A Prequel to Autism?

Wmosler By Kent Heckenlively, Esq.

For a long time I believed there was no group more wretched and abandoned by mainstream medicine than children with autism and their families.

However, after reading the magnificent book Osler’s Web Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson I have found a group which can reasonably lay claim to a similar level of hostility and indifference from the medical community. 

Dr. William Osler was one of the first professors of medicine at Johns Hopkins University School of Medicine and is credited with establishing the medical residency system.  He insisted that students learn from seeing and talking to patients.  He often stated, “He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.”  He’s also widely quoted for having said, “If you listen carefully to the patient they will tell you the diagnosis”, thus establishing the patient as the most important resource for the physician to solve the problem.

Osler’s approach was the reigning philosophy among medical practitioners throughout most of the 20th twentieth century.  Doctors were trained to listen to patient reports and the histories they gave were generally accorded high credibility.  But as medical testing became more sophisticated there was a shift in this philosophy.  If the patient complained of an ailment and the medical test didn’t pick something up, the focus turned to the psychological state of the patient.  Maybe the patient was crazy.

While with Osler’s approach the patient was a doctor’s greatest resource in diagnosing a problem, under the technological approach, the patient was suspect until proven credible.   To take an example from the legal arena, this shift is akin to our criminal courts proclaiming a person guilty until proven innocent.  The problem was not presumed to be with the test, but with the person claiming the supposed “disease.”  Osler’s Web claims it was this shift which has complicated meaningful research into the epidemic of chronic fatigue syndrome.  I could not help but hear echoes of the autism epidemic in this account.

Johnson explains that starting in 1984 in Lake Tahoe, Nevada, two physicians, Drs. Daniel Peterson and Paul Cheney began noticing an unusual malady in some of their patients from the wealthy community of Incline Village.  The patients had generally been in good health, a number of them were extremely athletic, and at first they came down with something which seemed to be a flu-like illness.  Examination of the patients found swollen lymph nodes but little else that could be detected in standard medical tests, such as those for anemia, thyroid abnormalities, diabetes, and a wide variety of common viruses and bacteria.

These patients complained of sleeping more than normal but not feeling rested, running a low grade temperature in the morning, and looking pale.  More severe problems would occur in the years to come for these patients, such as the appearance of rare cancers, seizures, and significant cognitive changes including memory and concentration problems, depression, and in many cases a startling loss of I. Q. of up to 50 points.  (100 is deemed to be a normal I. Q. and anything under 70 is considered to be intellectually disabled.)  When further testing was done on these individuals it was determined that their level of functional impairment was often similar to that of a terminal AIDS patient two weeks away from death.

After receiving the reports of Drs. Peterson and Cheney, the CDC dispatched two knuckleheads from the CDC, Gary Holmes and Jon Kaplan.  Holmes, the younger of the two seemed more interested in the opportunity for hiking afforded by the mountain resort area, while Kaplan was intent on disputing the local doctors’ account of the events. 

Both researchers from the CDC were uninterested in meeting with patients, and when the medical tests couldn’t show any recognizable pattern of infection, claimed the patients were suffering from some sort of mass delusion or hysteria.  These were the two individuals most responsible for creating the impression that the disease was a kind of “yuppie flu” among rich people plagued by some existential malaise.  They came to these conclusions even while ignoring the evidence of another outbreak in a near-by town, Yerington, Nevada which was made up mostly of hard-scrabble farmers.  I imagine Osler would have been horrified by the CDC’s investigation.

What was even worse than the initial report by the two investigators was the atmosphere of ridicule they created at the CDC regarding this mysterious disease.  The contempt at the agency is probably best exemplified by what was supposed to have been a humorous letter written by a CDC employee and purporting to be from one of the thousands of disease sufferers who would later besiege the CDC for information about their condition.  


It read in part, “Dear Sirs, I am sick . . . I am so tired it took me six days to dictate this letter to my secretary . . . I would like a list of recommended treatments . . . in descending order of trendiness, including acyclovir, gamma globulin, WXYZ-2, 3DOG, Vitamins A, B-1 through 12, C, D, E, F, G, H, I, J, K, L, M, N, O, P, and Q, Zinc, Cadmium, Cobalt, Neodymium, Ytterbium, lecithin, morithin, lessismorithin, sensory deprivation, walking on hot coals, purified fruit-bat guano injections, and bedrest.  I have already tried Valium, Lithium, Haldol, and thorazine, but they only work when I take them.  Please inform me how to get social security and workman’s compensation benefits for the above diseases.  I have had them for over forty years now, and I am only twenty-nine years old.”  (P. 154)

A copy was pasted on the office door of Gary Holmes, who by the time was the lead investigator of the disorder.  It also remained on the division’s bulletin board for two and a half years until a staffer noticed it had caught the attention of a nosy reporter. (Hillary Johnson, no less!)

But even with the contempt of the CDC and most of the medical establishment a small group of doctors including Drs. Peterson, Cheney, as well as Elaine DeFreitas of the Wistar Institute, Anthony Komaroff from Harvard University, John Martin from the University of Southern California, Nancy Klimas from the University of Miami, Canadian clinician Byron Hyde, and New York clinician David Bell, had discovered an unusual constellation of results from medical tests which pointed to some of the abnormalities associated with this disorder.

One of the most dramatic immunological abnormalities associated with chronic fatigue syndrome was the abnormal ratio of T-cell subsets found in many patients. T-cells regulate production of disease-fighting antibodies.   T-cells are divided into “helper” and “suppressor” T-cells, which alternately boost and suppress antibody production. 

The ratio for a healthy person is 1 helper T-cell for every 2 to 3 suppressor T-cells.  In chronic fatigue syndrome the patients would have 5-10 helper T-cells for every 1 suppressor T-cell.  By contrast, the tests for AIDS patients showed 1 helper T-cell for every 5-10 suppressor T-cells.  Whatever was causing chronic fatigue syndrome seemed to be a mirror image of AIDS.

The researchers were intrigued by this finding and when they, “searched the medical literature for other diseases that produced similar inverse ratios of T-cells, they discovered that the finding had not been reported before.” (Johnson wrote on P. 95 of Osler's Web)

Another abnormality associated with chronic fatigue syndrome discovered by Dr. Paul Cheney was the blood sedimentation rate, often referred to as the “sed” rate.  The test is relatively primitive, requiring the newly drawn blood of a patient to sit in a test tube for an hour while the technician determines the degree of separation between the blood cells and fluid.  It’s been described as being similar to watching cream separate from milk.  A healthy person will have a sed rate from 10 millimeters to 30 millimeters an hour.  But among the chronic fatigue syndrome patients the commonly observed sed rates were 0, 1, or 2 millimeters per hour.

“Curious about the finding, he (Cheney) took to reviewing the Nalle’s sed rate log, pages on a clipboard maintained by the clinic’s lab technicians.  A total of eight doctors-internal medicine specialists, pediatricians, and gynecologists-routinely ordered the tests, which, when high, can signal cancer or an inflammatory disease such as arthritis.  “Over a period of several months,” Cheney recalled later, “I would go in on a daily basis and look at those sed rates.”  Every abnormally low sed rate the doctor saw, with the exception of those of very young children, in whom low sed rates are not considered pathological, turned out to be a Tahoe malady patient in his care.”  (P. 214 of Osler's Web)

The new technology of MRI imaging provided another clue as to what was happening in the brains of chronic fatigue sufferers, but since the technology was so new many doctors rejected it as being of any importance.

In scanning the brains of patients with chronic fatigue syndrome with what was then the most sophisticated MRI machine they found that about fifty percent of them had small lesions in their brain, referred to as Unusually Bright Objects (UBOs) and that their position in the brain often corresponded to the type of impairment the individual was suffering.

“More problematically, the neuroadiologist had never before seen abnormalities like the ones he saw in the Incline Village patients’ brains.  More than anything they resembled the brain lesions seen in multiple sclerosis, but there were significant differences.  In multiple sclerosis, the lesions-or plaques, as they were known-were anywhere from three to four millimeters up to a centimeter in size.  There were far fewer of them, and they were located in the central white areas of the brain next to the ventricles or brain cavities.  In contrast, the Tahoe patients’ lesions were tiny pinpoint, or punctate, spots; there was nearly always a multitude of them and they appeared in a different part of the brain.”

“In my mind, I just don’t think these could be easily confused with the MR scan abnormalities that you see in multiple sclerosis,” the doctor said.  They were new-located near the top of the brain near the white matter tracks, some distance from the ventricles.  To be perfectly honest with you, he continued, we weren’t sure what they were or what they meant.  Even know we are not one hundred percent sure what they mean.  But they were there.  And the patients were sick.”  (P. 79) Later testing would reveal that about 77 percent of chronic fatigue sufferers had these lesions in their brain. (P. 215 of Osler's Web)

In Johnson's account, what was most frustrating to the medical practitioners trying to validate this disease and provide some level of treatment to the patients was the hostility of the general medical community to their findings.  Patients would go to world-famous centers of medicine like Stanford University where the doctors would refuse to even look at the results of medical tests brought by the patients.  It was as if the medical community, having listened to the contempt of the CDC had decided there was no actual disease and didn’t want to be bothered by any inconvenient facts.

An example from 1992 illuminates the problem.  “Dan Peterson’s despair over the state of medical progress on CFS continued that summer.  “I don’t think this is getting better, he said in June.  “I think it’s going backward.  Everybody selectively ignores evidence, like sky-high cytokines, brain lesions.  I just sent one of my patients to UCSF.  She had huge brain lesions.  She saw a world famous neurologist there.  She came away with a psyche diagnosis.”  (P. 594 of Osler's Web)

But the small cadre of doctors investigating the disorder, led by Dr. Elaine DeFreitas seemed to be making significant headway into discovering what was causing the malady.  Specifically, it seemed to be an unknown type of retrovirus which would in turn reactivate infections of the Epstein-Barr virus, and human herpes-virus 6 as well as others.  DeFreitas found that in identifying the virus specific protocols had to be followed, such as not freezing the blood because it destroyed the cellular DNA in which the virus like to nest, the sample needed to be cultured for 10-12 days in order to generate significant numbers of the virus, and specific primers needed to be used.

In attempting to replicate her work the CDC did not follow these protocols.  This small cadre of doctors had also been joined by Walter Gunn, a CDC employee who had taken over for Gary Holmes and in the view of the CDC had “gone native” because he believed the CDC was not dealing with the issue in the appropriate scientific manner.  Rather than continue to assist the CDC in their behavior, Gunn retired from the CDC to help the small group of medical rebels.

All of this was made more frustrating by the development of an apparent treatment, a drug called Ampligen, an immune system modulator which seemed to balance the ratio of helper and suppressor T-cells so the body could at least temporarily keep the virus at bay.

“By mid-September, Dan Peterson’s pilot study of Ampligen was officially over.  All the patients had undergone an elaborate series of tests including treadmills, mental status exams, MRI brain scans, and careful assessment for human herpes-virus as well as a range of blood tests.  Eight patients experienced dramatic improvement by several measures.  Their performance I.Q. levels rose.  Consumption of oxygen, tested by walking on a treadmill, increased “markedly,” Peterson reported, in 60 percent of the patients, some of whom had greater than 100 percent improvement without engaging in any exercise program.  Interestingly, Ampligen also reversed high levels of human herpes-virus 6 proliferation in assays by tissue culture.”  (P. 355 of Osler's Web)

Johnson noted that Ampligen also seemed to cause the disappearance of the UBOs noticed on MRI scans, but when the trial was stopped the effect did not continue and the patients lapsed back into their previous state of poor health.  Many of the participants referred to this as “The Charly Syndrome” after the main character in the book Flowers for Algernon, a mentally disabled man who undergoes a medical procedure which temporarily renders him a genius, only to find himself slowly slipping back into his previous state of mental retardation.

When the CDC came out with its own report on evidence of a possible retroviral connection to chronic fatigue syndrome it was predictably negative since they had not followed the procedures so clearly laid out by Dr. DeFreitas.  The medical community went back to blaming the patients.  The reputation of Dr. DeFreitas would never recover.

One of the fiercest advocates against the proposition that chronic fatigue syndrome was an actual illness was Dr. Stephen Straus.  By the time Dr. DeFreitas’ reputation was in tatters in 1994 he could again spout his beliefs freely.

“In a few sentences, Straus also dismissed the by-now nearly fifty papers describing immunological aberrations in the disease.  “It’s fair to say,” he said, “that the findings in these studies are not reproducible.”  He denied the legitimacy of reported neuropsychological abnormalities with the comment “Very little cognitive impairment is actually verified [on careful testing]. .  . Most remarkably, Strauss concluded by blaming parents for at least some part of their dilemma.  A significant portion of their symptomatology of the disease, he commented, was a result of “poor sleep hygiene” and failure to exercise.”  (P. 685 of Osler's Web)

Like autism, chronic fatigue syndrome presents a quandary for medical professionals not following Osler’s principles.  We are suspect in the eyes of the medical profession, first from claims that autism was caused by “refrigerator mothers”, then in the 1990s the claims that we were pushing this diagnosis because we were greedy parents who wanted more services for our children, to the current claim that we are resistant to science.  I was fortunate during the recent Autism One conference to meet Hillary Johnson and discuss many of our common complaints with the current medical establishment.  Like so many in our community she has become a warrior for her cause and her example inspires many, including this writer.

Something is wrong with our children.  Could it be a retrovirus as it appears to be in chronic fatigue syndrome?  Other infections?  Toxins?  Might genetics play a role?  I know science can answer these questions if they approach it the way Osler suggested they look at any new problem.  We parents are not the problem.  The disease is the problem.

I've often thought that all sufferers from mystery ailments, ranging from autism and chronic fatigue to Gulf War Syndrome need to band together in an army of the wretched and ignored to put science back on its proper course.  Osler wrote, “Medicine arose out of the primal sympathy of man with man; out of the desire to help those in sorrow, need, and sickness.” 

How I wish Dr. Osler were alive today.

Kent Heckenlively is Contributing Editor to Age of Autism


 

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Thank you for this blog. That's all I can say.

Hi Kent,

I´m from Portugal and i have 6 year old boy with autism.
Some time ago I heard about the stem cell treatment in Panama and in Cologne (Germany).
In your opinion, what is the best treatment?

Thanks
Rui Fernando

“If you listen carefully to the patient they will tell you the diagnosis”, thus establishing the patient as the most important resource for the physician to solve the problem.

Er...Osler? We've got a problem.

Yes, one problem is that CFS patients and likely others now don't trust their doctors so they don't feel comfortable being open and honest with their symptoms. I, for one, refuse to bring up any test or symptom that is not "rock solid" so that the doctor doesn't have the opportunity to start going down the psychobabble path. If they do I demand that they provide hard science to prove their BS. Most of the time they can't provide anything except a lame well in my professional opinion to which I reply I am not here to for an opinion but something based on sound science. That shuts them up fast. It's really a shame and not productive.

M Encelpmelitis;
It says that animal vaccines are full of retoviruses, it is time to clean them up, and it is a mess. Increase in cancer in the intestines of cats and so forth. All countries, even if made by different companies had the same viruses in them.

Human vaccines are going through something "NOW" to get rid of the viruses. Is that realy true? If so then how come that what ever that vaccine for infant diarhea - retoteq or whatever was just found to have one and then two of these viruses. Don't sound like the human vaccines are cleaned up either.

Once they are in the human genome, they are passed on to the next generation. Well if this is what is happening to my family there will not be a next generation to worry about passing it on down to the next generation.

AND Here, I was worried about an element like mercury, or aluminum and wondering how we could get that out of my family's cells,when it could still be something as complicated as a retovirus of a mouse. That is a Lot bigger, dangerous, and more complicated than a simple element?

Kent thanks for this important article, I hope you will follow this up and if possible answer an important question with regard to vaccines triggering Autism and M.E. and Gulf War Illness.

When was RT-PCR introduced to screen human vaccines for retroviruses?

Cat and dog vaccines are currently not being screened for retroviruses.

http://thedailybite.wordpress.com/2010/04/13/infectious-retroviral-contamination-of-cat-and-dog-vaccines-discovered/

I would also recommend that everyone get the information about the Whittemore Peterson Institute to as many autism forums as possible - they are our only hope.

Sorry It was not Horowitz -- I meant Hilleman - the interview with Hilleman.

That man was confessing so he would not go to Hell after he died.

Media Scholar;
Is the government telling us to lie about pre-existing conditions?

Is that it?

Later when we are sick, we will not be caugth by insurance companies?

If so the government should just out right say it because there are really dumb people like me that needs the direct approach.

Patron99
Thank you for the link to the U tube. I have always heard references to this interview with Dr. Horowitz, but have never ever seen it.

So at last I have seen it, thanks to you.

Dr. Horowitz had a dry sense of humor. Such a man thinks everyone is as knowledgable as him, thus you have to pick out his dry jokes from the real tragedy, but he was dead serous about the virus found in the polio vaccine.

He was joking about importing the green monkey directly from Africa and thus imported Aids. He did import the green monkey only to advoid the vast amounts of viruses in the holding pens. He was trying to solve some of the problem of viruses in vaccines as much as was possible (scary stuff). He knew (and assumed we all did) that the Aid virus came from a closer relative to the human race - the Chimp.

Carol also linked me to this short summary of a book called "THE RIVER" http://www.uow.edu.au/~bmartin/dissent/documents/AIDS/Hooper03/Hooper03.pdf

I appreciated the summary since I am so busy I can hardly get "Callous Disregard" read. Plus "Callous Disregard" requires reading a paragraph - stopping and rageing for a while. It is not a straight read, at least not for me.

@ Benedetta - Thanks so much for the link to the SV40 article. I agree with you. Very interesting reading. I found an interesting thread titled "Could XMRV Be Transmitted by Vaccine?"

http://www.forums.aboutmecfs.org/showthread.php?5659-Could-XMRV-Be-Transmitted-by-Vaccine

Who could ever have designed a more efficient means of horizontal transfers of DNA from species to species than that found in today’s pediatric and adult vaccination schedules? Why don't we ask Dr Leonard Horowitz?

http://www.youtube.com/watch?v=edikv0zbAlU

Thanks for the article, Kent!

Imagine if XMRV were one of the root causes of both ASD and CFS. Imagine what it would be like if all of us sick children and adults could be treated for XMRV and recover! I hope it will happen.

From "across the pond":- Thanks for the recommendation - Amazon.co.uk has just shipped my copy of "Osler's Web" to me.

I think Carol posted this in an article before;

VERY INTERESTING READING - I have kept it in my favorites


http://www.theatlantic.com/past/docs/issues/2000/02/002bookchin.htm


Considering patients....(notice "proposed")

http://www.reuters.com/article/idUSTRE6674G020100708

U.S. companies that partner with hospitals and other health providers could face steep fines if they disclose private patient information under a new federal rule proposed on Thursday.

"That means we have much greater ability to keep personal health information safe and secure," U.S. Health Secretary Kathleen Sebelius said at a news conference.

The Department of Health and Human Services, which issued the rule, also announced it would post summaries of all major breaches online.

"There have been a number of incidents and complaints that we have received over the years that do involve business associates having lost information, or misdirected information, or otherwise mishandled their protected health information," said Susan McAndrew, deputy director for health information at the HHS Office of Civil Rights.

Any study that gets anywhere close to a virus as the culprit will be shut down. If viruses can produce latent effects, then the natural question would be, what about the viruses in vaccines? Yes, it could be "all in the head," but it's not us!

Fascinating article. It makes me wonder how many other disorders are being subjected to the same MO by the CDC.

I don't know what to think about this?
I do know that my husband had a vaccine reaction twice to the tetanus vaccine.

Seizures the first time, and then muscle aches for the second one that led to a dignosis of an acquired mitochondrial disorder.

Years of muscle pain, low oxygen - extremely low at times.

But two years ago he had an MRI because he felt he was in a continous fog. He was given some cholestrol medicine a few years back, and developed really bad foggy thinking and stopped taking it, but his really clear, logical mind of a chemical engineer did not totally return after he stopped taking the cholestrol medicine.

His MRI showed bright white pin points or pricks - a multitude of them just as described in this article????!!! So very similiar?

So, what do I do now with this information?
It sounds like if a vaccine gave my husband a retovirus -- and that is messing up the mitrochondria or---

, or the vaccine messed up his immune system allowing a retrovirus to invade his body ===

either way, I will not find a doctor to help us, or get a hold of this ampligen all because once again CDC has put up a brick wall to stop a cure.

The CDC again.
What is it about CDC, perhaps in the depth of it's belly it is not just the last frozen bit of small pox, but perhaps the devil resides there too - spreading his eveil influence -- like some Stephen King novel???

Andrew Hall Cutler (oddly absent from any Age Of Autism blog entries)believes it's the same disorder--mercury poisoning.

Stop waiting for the CDC and the AMA to solve your illness-chelate now! ;-)

Thank you - very interesting!!

Thank you for your article.

I have both CFS and have been offically diagnosed with Asperger's, my daughter is also on the Autistic spectrum and my father is probably too. Both CFS and autism run in my family.

The CDC suppressing The NIH and FDA study into XMRV (and probably altering the results of it right now as they want to hide things). Is so wrong.

This not only affects those with CFS but also those with Autism, prostate cancer and atypical MS as the XMRV virus has been implicated in all these things too. So studies being held back in this field is doing no one any good (except the government and insurance companies).

I think its interesting that many of the same triggers are said to be in autism and CFS including also genetics, methylation cycle issues, vaccination and toxins.

I am not aware that information yet exists as to whether XMRV is a cause of CFS/ME, or just a result of a disfunctional immune system.

It desperately needs research by other than the CDC, but I think it is important not to jump to conclusions.

Thank you Kent....I very much appreciated your article. You really did a fine job of bringing this information together. I have had ME/CFS for 17 years and read Oslers Web years ago. I'm thankful for people like You, Hillary, Mindy, and all the other leaders we have fighting for us. I see posts here by several of them. We would be sunk without you guys.

It does appear we have a Deja'Vu in process currently with the CDC. Brazen in your face corruption and arrogance by attempting to once again discredit research that has found a retrovirus link with this disease. The CDC's negative xmrv study is absurdly obvious to all (including them), to be designed to NOT find xmrv. For this reason and more, I especially like your idea of our different groups banding together. I would be all into supporting that idea.

Ross

Dr Michael Goldberg made the link between CFS and Autism and wrote a paper called "the myth of Autism" in the 2002 - http://nids.net/myth.pdf

Dont know if anyone knew of this but seems to be along the same lines.

I wonder what the incidence of CFS, fibromyalgia rheumatica, XMRV positive, and autism are in the completely unvaccinated. Why not solicit replies from families all over the world to provide EVIDENCE of their never having been vaccinated, along with a sworn statement as whether they suffer from CFS, FMR, autism, immune dysfunction, endocrine dysfunction, neurobehavioral, neuropsychiatric, neurodegenerative disease, etc? A similar database could be initiated wherein we ask the same questions of the completely vaccinated per both pediatric and adult vaccination schedules. Such clinical databasing could serve as a precursor to a controlled study, comparing two cohorts, fully vaccinated versus completely unvaccinated. We might identify geographic clusters. We might identify a dose-response, i.e. a relationship between incidence of disease and number of jabs.

Here's a slightly off-topic question for Kent:

Perhaps we need a test case to reach the high courts as to the Constitutionality of mandated jabs, e.g., under the federal Declaratory Judgment Act! I don’t have standing to raise the issue myself, in that I was not personally injured by the pediatric and adult vaccine schedules...at least, not that I presently know of or can prove. It seems to me, a non-lawyer, that we all have a God-given right not to have the integrity of our bodies violated by government-mandated jabs of any kind! This opinion is NOT intended to be either medical or legal advice, nor should it be construed as such.

I haven't had the brain function to read Osler’s Web (CFS for close to 20 years, am XMRV positive) but have tried to piece together as much of the back story as I could understand. Thank you for this excellent basic breakdown of the book that filled in many gaps and questions I still had. I appreciate finding something informative yet short enough I could read (it only took me an hour and a half). Continuing to pray for answers for all of us and have great admiration for the autism community!

"...patients would go to world-famous centers of medicine like Stanford University where the doctors would refuse to even look at the results of medical tests brought by the patients."

That stance was alive and well up to a few years ago when the team of Stanford geneticists told us in response to our private genetic testing: Go home. Your boys are walking and talking. We can do no more for you.

Isn't it obvious that the medicinal community has become the social branch of denialism?

MAKE AUTISM STOP

"Osler’s approach was the reigning philosophy among medical practitioners throughout most of the 20th twentieth century. Doctors were trained to listen to patient reports and the histories they gave were generally accorded high credibility. But as medical testing became more sophisticated there was a shift in this philosophy. If the patient complained of an ailment and the medical test didn’t pick something up, the focus turned to the psychological state of the patient. Maybe the patient was crazy. While with Osler’s approach the patient was a doctor’s greatest resource in diagnosing a problem, under the technological approach, the patient was suspect until proven credible."

In one short summary I think you've nailed the underlying problem with Western medicine today. Correcting this would be true healthcare reform. Listening to patients and valuing their reports, treating them as credible sources, is not taught in medical school today. When healthcare organizations (and the government) talk about "evidenced-based medicine" they are not including patients' descriptions of their condition as evidence. Doctors are even led to be suspicious of their own observations, their own hands-on examination of the patient, their own senses. I believe that the quality of medical care suffers for it.

Wonderful article! “While with Osler’s approach the patient was a doctor’s greatest resource in diagnosing a problem, under the technological approach, the patient was suspect until proven credible.” I’ve heard some very enlightening comments from the parents of autistic kids at this site. Unless doctors listen to the patients, the problem will never be diagnosed, much less treated, cured, and prevented.

“Pro-vaccinators claim eradication success with vaccines against two diseases: smallpox and poliomyelitis. The problem is that both these claims are not true, but many people believe them. In this article, I deal with outbreaks of paralytic poliomyelitis straight after mass vaccination programs in both developed and developing countries, as published in orthodox medical journals.” — Viera Scheibner, Ph.D.

http://www.whale.to/vaccine/scheibner.html
http://www.whale.to/vaccines/smallpox14.html
http://medicalvoices.org/vaccination/articles/smallpox-vaccine-origins-of-vaccine-madness.html
http://medicalvoices.org/vaccination/articles/quack.html
http://www.drcarley.com/Horrors_of_Vaccination_Exposed.pdf
http://www.autismhelpforyou.com/Simpsonwood_And_Puerto%20%20Rico.htm
http://www.scribd.com/doc/2887572/Simpsonwood-Transcript20Searchable
http://www.youtube.com/watch?v=edikv0zbAlU

Our voices are not being heard. We are being drowned-out by pharma and their legion of “vaccine mythologists”. WHO, CDC, FDA, FAO, Gates Foundation, GAVI Alliance, and BIO, are acting in concert. The perpetuation of vaccine madness is central to their agenda. They exert their influence directly on governments. Global vaccine policy gives them a direct means of controlling us, e.g., by means of fear of disease and pandemics. It gives them a direct means of controlling our natural immune defenses, e.g., by means of adjuvants containing aluminum and squalene, and fluoridated water. It gives them a direct means of controlling the human genome, e.g., through horizontal transfers of DNA from species to species by means of the food supply and mandated jabs. Many of us are blissfully indifferent sheeple, generally clueless as to the danger that lurks amongst us. For many of us, fear is getting the better of us. We are not learning from history. The pandemic flu “hysteria” of 2010, is likely to replicate the pandemic flu “hysteria” of 2009. Our mistakes keep being repeated. Will it ever end? I pray that we are nearing a “tipping point” with respect to vaccine madness.

The Flowers for Algernon Charly syndrome reference from Osler’s Web actually stems from an investigative article I wrote in 1994 on the experimental HIV/AIDS and CFS drug Ampligen. The article, which appeared in Philadelphia magazine, is called “The AIDS Drug No One Can Have,” and Hillary Johnson quoted from it in her book.

My blog, CFS Central, is covering XMRV extensively, as well as other issues related to CFS. You can read the Ampligen article at CFS Central, or here: http://www.cfscentral.com/p/aids-drug-no-one-can-have.html

Mindy Kitei
CFS Central
http://www.cfscentral.com

Medicine as we know it is a complete failure. No disease has ever been cured or the cause found. Autism, cancer, alzheimers, etc - it's all just a big iaotrogenic mystery. Stay away from doctors and dentists to to keep your health.

I cured my chronic fatigue when I had my amalgams removed. Yeah, big mystery.

I used to be so naive about what was going on with the health care system, CDC, etc. I thought it was just ignorance on their part, but it is ACTIVE SUPPRESSION going on with their covering up other studies that prove XMRV is present in not only CFS patients but also the "healthy" population. This has bearing on the autism community, too, as XMRV has been found in a large number of children who have autism.

Yes, my friends, evil is alive and well today and it lives at the CDC!!!!!!

Kent may not be aware of the fact that medical records, including lab test results, vaccine lot numbers etc. are not always readily provided willingly to parents hoping those physicians who do agree to provide care for vaccine-injured children can have them.

Many parents, for example, are under the impression that their children are "born" with Autism. In fact, when birth records are examined nothing potentially indicating the administration of the Hep B birth dose is left un-redacted or un-omitted.

This point is brought out very clearly in the Simpsonwood transcripts.

Further frustrations pile up when investigating the association between these seedy medical publishers and the anti-litigation software deployed abroad which most certainly can be used to "sanitize" medical records.

We may or may not recall the discovery that "someone" has the capability to "hack" name brand medical testing equipment which raises serious doubts about the honesty and true intentions of the medical profession.

A show of hands among even DAN doctors will undoubtedly indicate that the anti-litigation bloc of Autism research is alive and doing plenty of continued harm to our vaccine-injured children and families.

Unless Kent believes lab results which likely indicate vaccine injury vaporize, he too, can appreciate the difficulty that parents of vaccine injured children have seeking not only compensation, but most importantly continuing care and vital Thimerosal and vaccine research.

Thank you for this article. I have been ill with CFS for 16 years. I have often looked for a synopsis of Hillary Johnson's excellent book and will forward yours to family, friends and physicians. Having lost 50 IQ points to CFS, it is difficult to explain the history of the "syndrome".
We admire the activism of the autism community. Those of us in the CFS patient community are primarily housebound and unable to participate in public protest. We are hoping that the CDC will be unable to shut down the discovery and study of the retrovirus XMRV. Many researchers believe that XMRV is the retrovirus that explains our illness as well as fibromyalgia, GWI and autism. We all need to band together to stand up against the CDC. For information on XMRV visit us at http://forums.aboutmecfs.org/forum.php

There is a more recent development to this story – CDC is once again showing off its arrogance and denial AS WE SPEAK!

In October last year a paper was published in Science journal showing high presence of the newly discovered human retrovirus in CFS (as well as some presence in healthy controls). To date there have been several attempts so far to “debunk” those findings, mostly led by psychologists with a long history of claiming CFS was a psychosomatic disorder and a huge interest in maintaining status quo.

Then only a few weeks ago a story was leaked on a major breakthrough, a group of scientists from NIH and FDA gov agencies have indeed replicated the Science findings, the paper had been peer reviewed and about to be published.

But then news emerged of another government agency study coming out, this time negative, and by no other than CDC!!! Those same scientists who “discredited” DeFreita’s findings almost 20 years ago were now “unable” to replicate XMRV Science findings. (interestingly those same scientist were not able to find contamination of MMR vaccine by retroviruses back in the 90s, but then oh doh! sorry guys they did find some contamination, but not to worry as they didn’t find the contaminants passed on to vaccine recipients, so nothing to worry about… case closed!).

Then an unprecedented turn of events emerged: both studies were put on hold at the end of last month (not allowed to be published), by top tier gov officials – so far anonymous but the names of Collins and Fauci have been mentioned …. Said they wanted to find out why discrepancy in results, to find a consensus. Then few days later the CDC negative study is allowed out. Turns out the authors used a very funny way of choosing their cohort, and used some very funny and unusual techniques for finding the virus, some of which were almost certain to kill the very thing they were supposed to be looking for. They also forgot to mention receiving positive samples and not being able to find anything in those samples using their methods. The CDC study obviously designed NOT to find anything.

The positive replication study by NIH/FDA is still not allowed to see the light of day. It has been “sent” for additional reviews. According to the leaked story it has found XMRV and “other” novel murine retroviruses in almost 90% percent CFS patients, and 7-9% of healthy population.

The story is covered in detail here http://www.forums.aboutmecfs.org/content.php?180-The-CDC-XMRV-Study-How-Not-to-Find-XMRV
And being covered as it unfolds on several blogs and online papers, like WSJ http://www.cfscentral.com/2010_07_01_archive.html
Hillary Johnson’s blog http://www.oslersweb.com/blog.htm (awaiting updates)

Excellent Kent! Love this!
"We parents are not the problem. The disease is the problem."

And this
“He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.”

Autism is only a mystery because the world of medicine immediately blammed and ignored the parents and because of that never recorded the full picture of symptomology, onset, etc. So no, they have never gotten off the shores, let alone out to sea..

And we're about to find out more because the NIH and FDA have confirmed Mikovits et al., finding XMRV in a high number of CFS patients...oh, wait, that paper's been suppressed because the CDC couldn't find the retrovirus. Again.

I smell a Rattus rattus.

http://www.nature.com/news/2010/100702/full/news.2010.332.html

Hi, Ken.

I very much appreciated this article. I have been a CFS researcher for 14 years. I believe that there is good evidence that autism and chronic fatigue syndrome are actually the same disorder at the biochemical level, the obvious differences in symptoms and epidemiology being due to the different ages of onset. But at the biochemical level, the core issue in both is a chronic vicious circle mechanism involving a partial block in the methylation cycle combined with depletion of glutathione. This was shown in autism by S. Jill James et al. in 2004, and Dr. Neil Nathan and I have found the same to be the case in chronic fatigue syndrome. My papers and articles, which support this proposition, can be found at this website:

www.cfsresearch.org

by clicking on CFS/M.E., and then on my name.

Best regards,

Rich Van Konynenburg, Ph.D.

I tried to get a scrip for some tests for myself at Great Plains.. My doctor wouldn't do it, so he sent me to the chief who in turn asked me a bunch of questions with a checklist. Whenever I tried to tell him what was wrong with me, he got mad at me and told me that he was doing his job and needed me to stop talking. In the end, he decided I was depressed and needed a psych workup. I called him a quack to his face and he put that in my medical record. He said he wouldn't write me a scrip for the tests since it was alternative medicine and it might feed into my depression. Why do so many of these doctors see themselves as God like. It is so sickening.

About the wonderful halcyon early years of CFS -- don't forget that Straus was the one who, in his job at the CDC, received money to research CFS and then used it for something else. Basically, in the opinion of patients hoping for some information, stole funding.

His answer (much later) was approximately, "Well, we didn't know what to study so we used it for something where we did know." Not at all an exact quote, but the sense of it is there.

Swine.

I took a stack of my labs showing all of the above mentioned types of oddities, along with positive XMRV results to a Infectious Disease doctor, looking for treatment. I was told that I was not sick, because sick people were very thin and wasting. He then told me there was nothing wrong with me, he didn't beleive CFS was a infectious disease, and I was just having a spiritual crisis. I asked him if my son with autism was also having a spiritual crisis? Because if so, it began abruptly when he was about 15 months old. I could go on and on about the way I was insulted by this pompous ass, but you get the idea.

I often wonder if too many MD's suffer from the arrogance of ignorance or the ignorance of arrogance. Either way, they clearly have stopped serving their patients, and serve only themselves.

Fascinating how consistent the CDC is in it arrogance and denial. The organization's role as defender of status quo, the medical and pharmaceutical establishments, is antithetical to science and the health of our nation. But the corporatization of the CDC is merely one stop along the way on this slow train to fascism.

Let's be honest and change our nation's name to what it really is: the United Corporations of America.

Excellent article that I have forwarded to my staff and colleagues. CFS and autism are excellent examples of how dense the conventional medical establishment can be. Adverse effects of vaccination and failure to recognize the incredible damage caused by overmedication of the population for a scourge of disorders caused by toxic exposure, poor diet and poor lifestyle are also examples of how the medical establishment (together with the pharmaceutical industry, governmental agencies and the media) lead us astray.
Michael B Schachter MD, CNS

“If you listen carefully to the patient they will tell you the diagnosis”, thus establishing the patient as the most important resource for the physician to solve the problem.
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Er...Osler? We've got a problem.

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