PDF/EPUB Hillary Johnson Æ Æ Osler's Web Inside the Labyrinth of the Chronic Fatigue

�A relentless meticulous and highly persuasive exposé by a journalist who spent nine years investigating the medical research establishment�s failure to take seriously chronic fatigue syndrome In a chronology that runs from 1984 to 1994 Johnson crams in fact after telling fact building up a dismaying picture of a rigid and haughty biomedical research establishment unwilling or unable to respond to the challenge of a multifaceted disease for which a causative agent has yet to be found A compelling well documented account� � Kirkus Reviews

10 thoughts on “Osler's Web Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic

  1. says:

    The disease described in this book has since been identified as Myalgic encephalomyelitisChronic fatigue syndrome MECFS 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 ME and the Future of Medicine available to stream on The legacy of this syndrome continues to this dayhttpswwwsfgatecomnewsarticleR

  2. says:

    This book really gives you an understanding of how and why ME 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 deliberateThe 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 imagineThis 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 thewell you'd have to call them evil people behind it all Whether you have ME or one of the many other diseases commonly misdiagnosed as 'CFS' you'll be outragedIt 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 ME or 'MECFS' is not the way forwardYou need to also know that ME patients were treated appropriately and correctly diagnosed until around 1988 when there was an increase in the number of ME 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 ME and to hide ME in plain sightUnder the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of ME; even though the existing evidence has been published in prestigious peer reviewed journals around the world and spans over 70 yearsME 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 diagnosisThe fact that a person qualifies for a diagnosis of 'CFS' a does not mean that the patient has ME and b does not mean that the patient has any other distinct illness named CFS' ME and 'CFS' are not the sameFar fewer than 05% of the population has the distinct neurological disease known since 1956 as Myalgic EncephalomyelitisChronic 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 ME According to the latest CDC estimates 254% of the population qualify for a 'CFS' misdiagnosisThe 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 conditionsSub grouping different types of 'CFS' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term ME such as 'MECFS' would achieve nothing and only create yet confusion and help to continue and further entrench the mistreatment and abuseThe 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 diseases as 'CFS' that is the entire issueDue to outrageous political influences on medicine and govermnent policy the vast majority of ME patients will not be able to be correctly diagnosed with ME Most ME 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 ME patients The overwhelming majority of those misdiagnosed with 'CFS' do NOT have ME 'CFS' is NOT just another term for METhe name Myalgic Encephalomyelitis must be fully restored to the exclusion of all others and the World Health Organization classification of ME as a distinct neurological disease must be accepted and adhered to in all official documentations and government policy ME patients must again be diagnosed with ME and treated appropriately for ME based on actual ME research For this to happen there is a real need for patients and others to participate in genuine advocacy and activismThe 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 ME PVFS depression cancer or any other disease Correct diagnosis is vital in obtaining the correct treatment ME is not the same thing as CFS or CFIDS or 'MECFS' but this book is a ME book in most of the descriptions of the disease absolutely We do know that ME is not caused by a retrovirus but an enterovirus with a 4 7 day incubation period however For political information on ME and why ME is not 'CFS' see books and articles by Dr Hyde and Dr DowsettJodi Bassett The Hummingbirds' Foundation for ME

  3. says:

    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 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

  4. says:

    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 mecfs world since 1995 but the work MsJohnson assembled is a record worth reading of how it all went horribly wrong from the start

  5. says:

    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

  6. says:

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

  7. says:

    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 politicsThis 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 PharmaSpoiler 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 10000 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 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 doneAs 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 disabledWith 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 areaTriple 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

  8. says:

    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

  9. says:

    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

  10. says:

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