Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic

by Hillary Johnson

An informative book provides facts and refutes myths about a disease that affects three hundred out of every hundred thousand Americans, discussing its origins and symptoms as well as presenting personal accounts from those who have or had suffered from CFS. Reprint.

Genres: Nonfiction, Health, Medicine, Science, History, Medical, Biology

736 pages, Paperback

First published March 12, 1996

Reviews

[Michael Perkins · Rating 4 out of 5]

The disease described in this book has since been identified as Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS). It's a chronic, debilitating multi-system illness affecting the neurological, endocrine, and immune systems. For an updated account of this affliction, I recommend the recent documentary "Forgotten Plaque: M.E. and the Future of Medicine," available to stream on Amazon.

The legacy of this syndrome continues to this day.....

https://www.sfgate.com/news/article/R...

[Jodi · Rating 2 out of 5]

This book really gives you an understanding of how and why M.E. has been stigmatized, ridiculed and ignored as much as it has. It makes it very clear that it was not a mistake or an oversight at all but that it was in fact utterly deliberate.

The pure stupidity and lack of basic human compassion involved is astounding. It's important to know how we've ended up in this mess so we can see how we might get ourselves out I think. It's also important that we not underestimate how low these people will go - its lower than you could even imagine.

This is a must read if you are well enough to tackle such a long non-fiction book, it'll just blow your mind and really fire you up about how badly we have all been treated historically and the...well you'd have to call them evil, people behind it all. Whether you have M.E. or one of the many other diseases commonly misdiagnosed as 'CFS' you'll be outraged.

It is also very important to read this book together with information which explains why 'CFS' as a concept must be abandoned and why renaming 'CFS' as M.E. or 'ME/CFS' is not the way forward.

You need to also know that:

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M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.

Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.

M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. A watebasket diagnosis.

The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.

Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.

The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.

Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.

The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.

Due to outrageous political influences on medicine and govermnent policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.

The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism.

The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.

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M.E. is not the same thing as CFS or CFIDS or 'ME/CFS' but this book is a M.E. book in most of the descriptions of the disease, absolutely. We do know that M.E. is not caused by a retrovirus but an enterovirus with a 4 - 7 day incubation period however. For political information on M.E. and why M.E. is not 'CFS' see books and articles by Dr Hyde and Dr Dowsett.

Jodi Bassett, The Hummingbirds' Foundation for M.E.

[Jessie · Rating 4 out of 5]

A real nasty story that makes the CDC's work in "Contagion" seem like a fairytale. But unfortunately, as much as Ms. Johnson relays the complex and unjust political history of the illness, she seems to want to simplify the complexity of the illness itself. Its been 15 years since this book was published, and although there is still some stigma involved with the diagnosis, a person today who comes to their doctor presenting with CFS is much less likely to be laughed out of the office than he or she would have been in the 80s or 90s. Nonetheless, the consensus on what causes CFS, or even more importantly, how to treat it, is still a bucket full of guesses. We'll (hopefully) see where the cards fall on the etiology of the illness in the coming years, but it seems that the source of injustice that Ms. Johnson doesn't fully acknowledge in this book is that CFS may well be an illness that with today's (let alone yesterday's) medical knowledge is unable to be understood. Still, after reading about all the losers in positions of power at major governmental ($$$$$) medical establishments... can't help but wonder "what-if" .

[Andrea · Rating 3 out of 5]

It was good to read an investigative approach to the history behind the diagnosis of Chronic Fatigue Syndrome and how that history affects the way the disease is perceived, researched, and treated today. There is a lot of insight here. However, the author takes WAY too long to tell the story, annoyingly leaving the reader hanging every couple pages at mini "cliffhangers" in each of multiple co-occurring stories. If you have CFS, you know how hard it is to hold short term "RAM" memory, so for anyone, especially those wit CFS or similar condition, this gimmick for creating suspense and intrigue just gets old and frustrating.

[Robert · Rating 4 out of 5]

This story is close to me because I lived for a decade at the center of the original outbreak (Incline Village, NV) just after it occurred. I eventually got a diagnosis of Fibromyalgia which shares 70% of its symptoms with chronic fatigue. This disease profoundly affects people's lives, and I find it disgusting that science is so mired in politics.

This is a fascinating history of this controversial disease. It has an anti-climatic end, because, in real life, we may never know the truth. Like a good novel, this true story is filled with both heroes and villains. The heroes, in all cases, are the doctors who did their best to treat the victims of the disease and the doctors and research scientists who tried to understand the cause and identify the micro-organism which causes it. The villains are the entrenched intransigent medical establishment lead by the government agencies: CDC (Centers for Disease Control) and the NIH (National Institutes of Health) in service to their masters, Big Pharma.

Spoiler alert: Unfortunately, the good guys did not win. The government agencies at first dismissed the disease entirely as the "Yuppy Flu". [Incline Village is a small affluent mountain town (pop 10,000) on the Nevada side of Lake Tahoe at 6500 ft elevation above sea level. The town is heavily visited by tourists both in the winter for the ski season and in the summer for hiking, boating, gambling (Nevada side), and sightseeing. When people who live at sea level come to the Lake and physically exert themselves, they often become prematurely fatigued because their bodies are not adapted to the altitude (permanent residents actually adapt by producing more red blood cells)].

So when the bureaucrats from Washington DC arrived at this beautiful mountain location, I imagine they felt both awed and alienated by the natural beauty of the place (not Washington DC!) and probably jealous of the affluent lifestyles of some of the residents (billionaire lakeside homes). So this hypoxia (lack of oxygen) argument gave them a convenient excuse to dismiss this problem (who needs the outbreak of an infectious disease?) and get back on a plane to go home. This may remind the reader of US Airforce's Operation Bluebook which collected evidence of UFOs and then ultimately dismissed all the sightings, labeling them as the misidentification of natural objects, stars in the night sky, or "swamp gas". Dismiss the evidence and move on, job done.

As this story unfolds, the heroes (the doctors), collect the data, and firmly establish the infectious nature of the disease. Next, research scientists set out to isolate the micro-organism. Others set out to create treatments. Eventually, one intrepid researcher claims she isolated a retrovirus that caused it and publishes her results. The NIH felt "scooped" and did not want to allow her to "take credit" for this scientific accomplishment. Publicly, they said they were going to replicate her result. However, privately, they manage to design an experiment that fails to re-create the exact conditions that produced the researcher's previous result. Having got their contrary evidence, they immediately publish their failure to replicate and throw into question the researcher's previous work. What follows is a tragedy. The researcher loses her funding, then her faculty position, and she is professionally ruined. She eventually gets into a car accident and becomes permanently disabled.

With the failure to replicate, the entire concept of an infectious agent is discredited. All other interested researchers, notice what happened to this person, and decide it is not a good career move to do research in this area.

Triple tragedy, the patients do not get a treatment or a cure; the researcher who may have found the micro-organism does not get credit for the discovery (probably in her lifetime.); other researchers are steered clear from doing research on this "politically charged" disease.

[Joseph Harriott · Rating 3 out of 5]

this is one heck of a thorough investigative trawl through the history of American research into CFS. As a man who's had moderate CFS for 8yrs, I was sure interested to learn what a mess of misunderstandings have led to the current stupidly dominating view that CFS cases should be handed to psychiatrists. There isn't another book that interprets so thoroughly for the educated layperson the various attempts to seek better clinical understanding, and the lack of overall co-ordination, or even acceptance that CFS exists as an identifiable disease. It sure was daunting to try to read, so I skimmed my way through, and got an idea of how hard CFS is for medics as well as for patients. New breakthroughs will come, of course, because there are always a few brilliant researchers with the right hunch; or maybe, like vitamin C for sailor's scurvy, the answer's already out there but being systematically ignored. I haven't found it, it's not in this book. So, still exhausted with CFS, but a little better informed, I got back to what works for me, which is rest, good humour, and mindfulness.

[Adrian · Rating 4 out of 5]

Wow, this book is intensely detailed. 700 pages telling the story of CFS from 1980 to 1995. Having CFS myself, I did not have the time to dedicate to reading this entire tome, but the story it tells is eye-opening and shocking. Hillary Johnson, the author, is a seasoned journalist and, had she not so well covered both sides of the story, I would have thought it was sensationalist. But it's not. Things have changed a lot in the me/cfs world since 1995, but the work Ms.Johnson assembled is a record worth reading of how it all went horribly wrong from the start.

[Chris · Rating 4 out of 5]

Doctors and scientists are infallible and without prejudice. Yeah, right! Read this and see how untrue that is. A strong account of how the medical and scientific establishment willfully ignored the evidence of Chronic Fatigue Syndrome and Fibromyalgia.

[~☆~Autumn · Rating 5 out of 5]

This book is very shocking and upsetting but a person should know the truth.

[Richard · Rating 3 out of 5]

Another story about medicine not listening to patients and allowing a series of symptoms to get out of control. Never minding about the cause(s), just focus on the treatment and cure if there is any.

[Lora Shouse · Rating 5 out of 5]

This book tells the story, in great detail, of the search for the cause of Chronic Fatigue Syndrome, and of the few feeble attempts that were made to produce a cure or at least a meaningful treatment. Much of the story is consumed in the quest to find the virus responsible for the disease. It was written by a medical reporter and covers the medical meetings, the papers in medical journals, and the infighting and secrecy surrounding the rush to publish medical findings and, apparently, to discredit other people who publish medical findings that are not the same as theirs.

Too much about Osler’s Web sounds familiar in this time of covid-19. There is a mysterious disease. It begins with flu-like symptoms. People who get it hardly notice it at first. But later on, they develop, seemingly at random, various debilitating symptoms. Symptoms that don’t go away. Or sometimes they do go away, only to be replaced by other debilitating symptoms. They suffer from fatigue. Their mental abilities deteriorate. They have muscle aches and crushing headaches. They can no longer do their jobs. They are unable to walk twenty feet without having to stop and rest. They fall asleep in the daytime but are unable to sleep at night. Most of these symptoms and many more are reminiscent of some of the symptoms that have been reported in the long-form of covid-19 – basically, just about any painful or annoying symptom you can think of. In the case of Chronic Fatigue Syndrome, they just don’t get better. But in this one, they don’t die, at least for a long time. Unless they commit suicide.

A government team of experts doesn’t believe it’s a real disease. In this case, somebody in the government health system has convinced himself that CFS is mostly psychosomatic (because he has looked for a suspected connection to a virus and was not able to find it; his theory is, if he couldn’t find it, there is nothing there), and he has managed, without trying very hard, to convince most of the mainstream medical establishment, not only in the United States but throughout the world.

Perhaps as many as a dozen researchers in various fields expressed interest in this disease, and perhaps three or four top-level researchers were at one time or another attempting to find the virus that was causing the problem. Several different viruses were looked at. The most promising ones seemed to be retroviruses. At one point three different people in three different labs seemed to have found a retrovirus in CFS sufferers. But eventually, it looked like they were all different viruses. None of this research was adequately funded, and the woman who may have come the closest to finding the actual virus was for a variety of reasons unable to continue her research.

I was most appalled by the attitude of the government institutions – the CDC and the NIH. I have long admired the CDC for its role in ferreting out the causes of mysterious diseases and helping to prevent or find cures for them. But in the case of CFS, they mostly dropped the ball. A couple of their staffers worked hard to try to quantify the problem and to assist in the quest to find the cause, but for the most part, it seems that the people at the highest levels of the organization, having made up their minds that the disease was no disease, were determined not to find out anything else about it. When Congress gave them money for research on CFS, they pirated most of that money for other things. Nobody knows what.

Similarly, the NIH had assigned the project to the National Institute of Allergies and Infectious Diseases (of which Anthony Faucci became head at about the same time). Their researcher was the one who decided that it was purely psychological. His main contribution for the next twenty years was to go around telling everybody, at medical conventions and everywhere, that it was a purely psychological disease, or maybe a personality disorder. He blamed the patients themselves for having the disease. Interestingly, this did nothing to cure or ameliorate the disease in any way. Many of the patients were treated by psychiatrists or psychologists; it did not seem to have cured any of them.

Curiously, Congress, of all people, after being heavily lobbied by CFS sufferers, appropriated some money (not a lot, but some) for research. The NIH was supposed to award research grants to people looking for the cause, or studying its relationship to cancers or other problems. But over the course of about five years, they only awarded one research grant, in a not particularly useful area, and just lied to Congress about how they spent the remainder of the money.

[Ali Langsather · Rating 5 out of 5]

I must have ordered this book about two years ago--when I finally had found a diagnosis to what I'd been battling for seven years at that point. I kind of chuckled when I saw how big it was and thought, "I'm never going to read that!" as I put it on my shelf. However, after going through a 20 month period working with a Functional Medicine Doctor (which I highly recommend), I finally felt up to the challenge and was hungry for some more information on what I had gone through. It surely couldn't have all been caused by gut flora, could it?
I loved it! And found the chronological journey of researchers, doctors, and scumbags to be fascinating. I could hardly believe how she had got so much detailed information, surely she wasn't at all of the meetings? (She alluded to being at at least one in person.) She revealed some pretty blatant sabotage from the establishment which I can't help but expect came from the top down somehow, although it could also have been sheer stupidity and bias. Defreitas could have found the virus, if only...! I was pretty riled up after reading it, but now that a few weeks have passed, I'm a little less so, but that's probably only because I myself am feeling better. No doubt the CDC and NIH's denial has ruined the chances of those who are bedridden to ever get their lives back at least with a drug.
The book gave me a lot more faith in and respect for good researchers and doctors than I had had before (I thought they were mostly idiots who could process nothing that wasn't in their textbooks already, forget about common sense or faith in humanity.) It does seem like a traditional cure is possible.
I, however, had already turned my attention to more natural medicine which led me to the Functional Medicine which is on the cutting edge of understanding how the systems of the body work together and the energy systems, thyroid, hormones, neurotransmitters, metabolism, etc. This is what I recommend, because after 20 months of all the supplements, etc., I am feeling like myself again: feeling good enough to write!

[Melee]

It’s the prequel to the de-discovery of HIV as the causative agent of AIDS.

[Shawn · Rating 3 out of 5]

Whew! Informative & investigative, superbly (& exhaustively) written. Johnson conducts a journalistic concerto of 690 pages, weaving a tale of all-too-human affairs among those exponents of learning upon whom the great lot of humanity depends, and mapping the skeptical, dubious, & treacherous landscape of modern institutional science, with its mountains of expertise knowledge, its rivers of dialogue across conferences, journals, outlets, think-tanks & leading figures, its deserts where no self-seeking researcher nor clinician would tread, and those shores of man's current understanding, adjacent the ever-widening, vasty deep ocean of the unknown. It pains the empathetic lay reader to bear witness to grievous blindness among agency & expert alike. Between the Centers for Disease Control and the National Institutes of Allergy & Infectious Disease, and about such circles of renowned virologists such as Dr. Stephen Strauss, float bubbles of gathered professional experience, some of which are virtually impenetrable. Should an auspicious clinician such as Dr. Daniel Peterson, or Dr. Dave Cheney, or virologist Elaine DeFreitas, approach such a bubble they would surely be overpowered by such esoteric force!

Proud of myself for finishing this weighty, tome-like text? I sure am. Do I recommend it? Well, it depends on one's reading capacity, & willingness to read on despite one's ignorance of subjects so complex & highly technical as molecular biology, virology, & infectious disease. For those who suffer from the perplexing illness of CFS this book serves as a testament to the valiant efforts of those underdog scientists who submit their research proposals for funding, & for grants, against sometimes puerile politics, or in unfavorable undercurrents of suspicion, skepticism & doubts, or before such proud & prestigious panels of renowned proficiency in medicine.

_Is there a bunch of heavy science in here? Not really. It does beseech the reader to understand, for instance, why it is best to not (repeatedly) freeze blood samples when searching for certain signs, or how the discovery of the cause of AIDS is attributed to Robert Gallo though the more patient & meticulous nature of the other scientist who concurrently discovered it characterized a more diligent & faithful, & a most humble & serving approach to research. There are many diseases & viruses that are described, some of which were initially suspected to be CFS. The reader is brought to peer at the lives of scientists, researchers, & clinicians, and to testify within himself or herself that people are people after all titles are announced.

__I'm puzzled by the book's length: was it meant to be accessible to the ordinary person who strolls down the aisles of a grocery store or super mart? It's not an approachable book from any angle (I borrowed it from the library as it was referenced in a book "Plague of Corruption") by its size & content though the writing is impeccable (hardly a typo or error!). It is certainly an accounting of, characteristically, two camps. The one preserving of prestige and pledged to provability, and the other deserving of attention & progress.
__Is there hope? A solution? A silver lining, or glimmer toward which to steer? Yes, there is hope should there be eager, curious, & intellectually open & humble professionals in the field of clinical science and of research into infectious diseases. The high costs of equipment, the indecipherable terminology and jargon employed by experts, the elusiveness of the sources of disease, the difficulty in reporting cases when the symptoms are difficult to describe or observe, the small-mindedness of some professionals ensconced within, namely, the CDC, the NIH, & the NIAID, and the pettiness of persons whose job it is to service the interests of the victims of this spiritually & physically debilitating disease, are all effects of the burgeoning complexity within the domain of scientific, medical discovery.

There is a case made for CFS being a retrovirus. There too is illustrated the manner by which CFS has been considered a psychiatric disease. Johnson chronicles a most interesting hunt for the source of an affliction. I'm thankful for my own health today, and wish those who are ill an easing of any pain!

[Janelle]

My mother bought this behemoth of a book for me, so I really should read it. But on perusal it looks very dry, and while I'm sure it includes much that is important, I don't think I'd ever be able to stand reading it.