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The Why: The Historic ME/CFS Call To Arms
If you have acquired Myalgic Encephalomyelitis (a.k.a. “chronic fatigue syndrome”) in recent years, you may have wondered why the U.S. government has done so little to promote research or understanding of this life-destroying disease. If you are looking for answers, The Why was written for you.
Scientific bias, doctors behaving badly, and misappropriation of federal ME research dollars all have played a role in the controversy. In The Why, I unravel deception by the Centers for Disease Control during the first 25 years of the ME epidemic that have fueled all the above.
Here are eight questions my book answers.
When did ME begin?
What is the origin of the false name “chronic fatigue syndrome?”
why are well-established biological abnormalities found in ME and published in the medical literature excluded from the government’s ME diagnostic criteria?
why has CDC refused to establish a national reporting system for ME?
Why has the federal government crushed rather than encouraged attempts to isolate a causative pathogen in ME?
How did the specious but prolonged argument over whether ME is “real” or “not real” begin?
Who has benefited from the CDC's longstanding policy of disregard for ME?
Have any laws been broken?
The Why shows how disabled sufferers were left vulnerable to everything from quack therapies to hate speech to financial impoverishment. Understanding this history may provide ME patients an ability to go toe to toe with a federal health agency that continues to harm rather than help. Raise your ME I.Q. Break the cycle of abuse and end the spread of ME.
Scientific bias, doctors behaving badly, and misappropriation of federal ME research dollars all have played a role in the controversy. In The Why, I unravel deception by the Centers for Disease Control during the first 25 years of the ME epidemic that have fueled all the above.
Here are eight questions my book answers.
When did ME begin?
What is the origin of the false name “chronic fatigue syndrome?”
why are well-established biological abnormalities found in ME and published in the medical literature excluded from the government’s ME diagnostic criteria?
why has CDC refused to establish a national reporting system for ME?
Why has the federal government crushed rather than encouraged attempts to isolate a causative pathogen in ME?
How did the specious but prolonged argument over whether ME is “real” or “not real” begin?
Who has benefited from the CDC's longstanding policy of disregard for ME?
Have any laws been broken?
The Why shows how disabled sufferers were left vulnerable to everything from quack therapies to hate speech to financial impoverishment. Understanding this history may provide ME patients an ability to go toe to toe with a federal health agency that continues to harm rather than help. Raise your ME I.Q. Break the cycle of abuse and end the spread of ME.
92 pages, Paperback
First published April 26, 2022
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Displaying 1 - 5 of 5 reviews
August 4, 2022
As someone with ME this was an excellent book. Insightful and informative
May 26, 2023
The history of how the CDC covered up the disease Myalgic Encephalomyelitis from the 1980s onwards, leading to chronic underfunding of biomedical research and decades of suffering and misery for patients. The renaming of the disease as 'chronic fatigue syndrome' created a pathway for the disease to be psychologized and minimised.
As somebody who has been bedridden for five years with M.E. it's important to know that the reason I'm here is far more than the disease itself, and as much to do with decades of institutional neglect, medical malfeasance, medical/ misogyny enabled by media apathy and misrepresentation. Thank goodness that Hillary Johnson is one journalist who bothered to do her job well.
I bought her other book, Osler's Web, second-hand just at the time I was becoming unable to read hard copy books. I'm glad this much shorter version has come out and is also now available on Kindle, making it accessible to me.
Essential reading for advocates and allies of M.E. and Long Covid to understand how these two instances in history are inextricably linked and why long-term and newly sick people now find themselves with no medical help for their disease.
As somebody who has been bedridden for five years with M.E. it's important to know that the reason I'm here is far more than the disease itself, and as much to do with decades of institutional neglect, medical malfeasance, medical/ misogyny enabled by media apathy and misrepresentation. Thank goodness that Hillary Johnson is one journalist who bothered to do her job well.
I bought her other book, Osler's Web, second-hand just at the time I was becoming unable to read hard copy books. I'm glad this much shorter version has come out and is also now available on Kindle, making it accessible to me.
Essential reading for advocates and allies of M.E. and Long Covid to understand how these two instances in history are inextricably linked and why long-term and newly sick people now find themselves with no medical help for their disease.
July 29, 2024
An amazing and terrifying look into the CDC's callous disregard for ME/CFS patients. We stole the funds set aside for ME/CFS for "more important" diseases? We have cartoons and letters making fun of you and boxes of unopened pleas for help? Really? But I'm not convinced that ME/CFS is caused by only one virus. I believe a virus could cause many of the cases, but I know what infections I got before I became bedridden: Anaplasma, Mycoplasma, Babesia, and a crazy reactivation of CMV. I never tested positive for Lyme. I was treated for all of these, but I have every symptom of ME/CFS. However, maybe the virus reactivated in me when I got them. I just read a book where mold turned out to be the problem! I believe the clusters are probably caused by a virus, and the single cases are probably caused by that or something like I went through. Consider Long Covid--post-infectious illness is everywhere. In the future, I hope these will be sorted out into different, distinct categories, but for right now, here we are.
May 3, 2025
Please cure ME
February 10, 2024
Prior to 2020 and the outbreak of COVID-19, I held the CDC in high regard. As a registered nurse, I viewed them, along with the WHO, as world leaders in public health, as they should be.
Gradually over the first few years of the pandemic, my high regard for the CDC took a fast downward slide. Their pronouncements, warnings, announcements, and recommendations made less and less sense the longer the pandemic went on. I was fast becoming quite cynical toward both them and our national government in the USA.
At this point in 2024, I view them as more harm than help to our nation and the world. It’s still startling to me that it took many months in 2020 to admit that covid19 is airborne, for example, and the list of continued erroneous and foolish communications from them goes on without end.
This book lays out 40 years of history leading up to 2020, when the curtain was pulled back from the Wizard of Oz at the CDC. The tens of millions of people with long Covid are now experiencing what people with myalgic encephalomyelitis, fibromyalgia, HIV, and AIDS have experienced for decades.
Gradually over the first few years of the pandemic, my high regard for the CDC took a fast downward slide. Their pronouncements, warnings, announcements, and recommendations made less and less sense the longer the pandemic went on. I was fast becoming quite cynical toward both them and our national government in the USA.
At this point in 2024, I view them as more harm than help to our nation and the world. It’s still startling to me that it took many months in 2020 to admit that covid19 is airborne, for example, and the list of continued erroneous and foolish communications from them goes on without end.
This book lays out 40 years of history leading up to 2020, when the curtain was pulled back from the Wizard of Oz at the CDC. The tens of millions of people with long Covid are now experiencing what people with myalgic encephalomyelitis, fibromyalgia, HIV, and AIDS have experienced for decades.
Displaying 1 - 5 of 5 reviews