In part 2 journalist Hillary Johnson shares more about her work and her life. If you’re not familiar with the story of how a biological disease that occurs in sporadic and epidemic forms was labeled as ‘all in your head’ by the Centre for Disease Control, than you’ll want to hear how it all went down from the one person who uncovered the corruption.
Hillary talks about her healthiest 9 months in 35 years of being ill when she was taking Ampligen and why she’s not still taking it. Hillary shares about being banned from the Centre for Disease Control (CDC) for seeking the truth and how that didn’t stop her from writing Osler’s Web. Hillary also tells how the CDC and a United Kingdom psychiatrist obliterated the lives of millions of patients worldwide by perpetuating a psychosomatic label that denied them biomedical care.
SHOW NOTES
In part 2 journalist Hillary Johnson shares more about her work and her life. If you’re not familiar with the story of how a biological disease that occurs in sporadic and epidemic forms was labeled as ‘all in your head’ by the Centre for Disease Control, than you’ll want to hear how it all went down from the one person who uncovered the corruption.
Hillary talks about her healthiest 9 months in 35 years of being ill when she was taking Ampligen and why she’s not still taking it. Hillary shares about being banned from the Centre for Disease Control (CDC) for seeking the truth and how that didn’t stop her from writing Osler’s Web. Hillary also tells how the CDC and a United Kingdom psychiatrist obliterated the lives of millions of patients worldwide by perpetuating a psychosomatic label that denied them biomedical care.
SHOW NOTES
Heart attack and cancer
0:06:00
The cardiologist found abnormal EKGs - myocardia eschemia, everything short of a heart attack and refused to approve Hillary for surgery until she found what was wrong with Hillary's heart - but Hillary had to fly for a funeral and had a heart attack on the plane Hillary returned to New York about 5 days later, and went to the cardiologist and the results showed Hillary had had a heart attack and the cardiologist again refused to approve Hillary for thyroid cancer surgery
Simultaneously, Hillary was working with a lawyer for 4 years fighting with disability insurer who said Hillary was making up her illness - the lawyer suggested to ask the cardiologist for a note for the insurance company - but the cardiologist refused - but the next day her staff notified Hillary that she'd been approved for surgery, so Hillary called the cardiologist and she said that it had just dawned on her that Hillary had cancer and needed surgery and "whatever happens, happens"
Several years later Hillary had heart attack symptoms again so made an appointment with the cardiologist - the cardiologist met Hillary in the waiting room and said she'd only agree to examine Hillary for a heart attack if she agreed to seek psychological counselling
About 6 years ago Hillary went to an ER with cardiac pain - they cared for her for 10 hours and recommend she see a cardiologist - this one said Hillary's symptoms were just stress - Hillary's EKGs are always wildly abnormal but she's given up trying to get help for it
Sometime, and usually now, Hillary does not disclose she has ME to a doctor - but even when she does disclose, it changes the relationship with the doctor, they pull back, not as friendly - there is no understanding or knowledge among doctors and we can thank CDC (Centre for Disease Control) and National Institutes of Health (NIH) - derogatory media worsens and they never stand up to contradict
They are glad, it allows them to continue to barely fund research - an anecdote about naming ME (myalgic encephalomyelitis) as CFS (chronic fatigue syndrome) and those CDC letters - one of the doctors made a joke that by calling it other than CFS would set up insurance companies for 'chronic' disbursements - in other words, protect the insurance companies
Simon Wessely in the United Kingdom has done a lot of damage saying ME is psychosomatic - after the CDC published its report and rolled out the name CFS - Wessely sent Holmes a letter, and you could almost see Wessely rubbing his hands together in gleeful anticipation - he congratulated on a wise choice in name and he had always thought ME was psychosomatic not organic and eager to collaborate for a long future
Hillary believes all the psychological proponents should be criminally charged - patients in the Netflix documentary Afflicted are suing the producers for defamation - Hillary hopes they bankrupt Netflix - but the original defamers, Gary Holmes, John Kaplan, Larry Schonberger really controlled this disease: no funding, no resources, no epidemiology
Goose that laid the golden egg
Hillary believe there should be a trial in The Hague about ME - and wonders if it is possible to un-Knight someone in the UK (re Wessely) - Wessely's corollary in the US was Stephen Strauss - Hillary's editor said Strauss reminded him of the quote about the Nazis and 'the banality of evil'
The CDC obliterated ME patients by saying ME wasn't real - they caused problems with medical care and personal relationships with spouses and families - Cheney said so much of his time was taken by attorney's in divorce proceedings and testifying that ME patients were sick, not crazy
Hillary reported the crimes of the CDC and were followed up by 2 federal investigations and her allegations were confirmed - the CDC received money starting in 1988 for ME research, about half a millions first year, and more each year after - after a decade was $150 million, but the investigation only went back 2 years, about $13 million misappropriated
This funding was informally known as 'the goose that laid the golden egg' for all the scientists who were using ME funds for their pet projects, not for ME research - each spring the head of CDC would go Congress for more funding - Hillary has the letters, a list of lies - Hillary's contacts in the CDC were secretly telling her ME research was not being done - just lies for a decade
The investigation by Health and Human Services (HHS) and General Accounting Office (GAO) both confirmed Hillary's work in Osler's Web - she is bewildered why there has not been a lawsuit - Walter Dowd was Acting Deputy Director knew the money was misappropriated and said he would make it right - instead a whistleblower scientist was then stopped from accessing the CDC and shortly after left before he could be fired for spilling the beans
Was CDC ignorant, incompetent, colluding, sociopathic? Hillary found a letter posted in CDC, the infamous "Dear Sirs" letter - devastating satire and making fun of people very ill and laughing at their pain - it had been posted for over a year - and a few years later it was still posted
Larry Schonberger was very resistant to removing the "Dear Sirs" letter from the bulletin board but finally relented - it has come back to haunt them as Hillary included its full content in her book
Hillary saw a neurologist about 5 years ago and he asked about her symptoms - everything about this disease has befelled Hillary - small strokes, brain abnormalities, encephalitis 5 or 6 times - Hillary feels like she's in a dream: the old 'me' that lived for 35 years without ME, and the current 'me' who has lived with it for 35 years - its hard to believe she was that person - and often dreams of her life before - overall waste of time / life
Ampligen gives 9 healthy months
Pneumonia and the flu are like mosquito bites compared to ME - Hillary dreams about all the books she would've written, the number of friends she'd have - she found no way to express how devastating and terribly unwell she was to friends, they did not understand her life had changed, that she was suffering - as years went by it became easier not to try
The lives of her peers at age 35 look unreal compared to Hillary's reality - before illness, her life was full color and full of activity, many friends, she had talent, went places, had a career and identity - now her life is hazy black and white blur
The best 9 months of 35 years with ME was taking Ampligen - the disease impoverished Hillary, and she has remained poor, she does try to write and has a subscription website - she has written about ME, and that is about her life - Hillary has tried to stop thinking about all the bad things US, Canadian, British, etc governments have done to ME patients, but she's always sucked back in
No one has had Hillary's experience of living with this illness while being with these people laying down the policies - those interviews are still fresh in her mind - they are real flesh and blood people who took those actions and have failed Hillary and everyone else who has ME - she has a tremendous amount of anger
"Hillary Johnson, writing with quiet fury" is one her favorite lines from a review of her book - Harvey Wittemore, famous Nevadan and helped found the Wittemore Peterson Institute, said "I had a difficult time reading your book. I would get to the end of the page and be so angry I would want to throw the book at the wall" - that is what Hillary was going for - she still hopes some day the evidence laid out in her book serves as a basis for reparations and lawsuits from those who've had their lives destroyed and live in poverty - unfair, unjust, criminal and still going on
The book is one thing Hillary is pleased about, she only wishes she'd been healthy enough to do more
Hillary first heard about Ampligen when it was first given to a woman named Nancy Kaiser who was dying of ME - Dr Dan Peterson was reading about Ampligen, an immunomodulator and anti-viral - it was invented late 60s / early 70s, it is a drug, interferon, synthetic and it is non-toxic, even FDA admits it is safe - 1,000s of doses given to people with ME, it is probably most potent drug that could possible help people - does not help everyone, but helps most
Hillary managed to get Ampligen when she was ill for 29 years - it involved laying on your back for 4 hours for infusion, twice a week - at the beginning you want to feel like you want to crawl into a cave and sleep - but around 4th or 5th month, things started changing, very gradual - by 9th month a friend who did not know Hillary before she was ill, within 10 minutes said "you're completely different, I feel like I'm meeting you for the first time"
FDA denies Ampligen
Hillary was upright, felt sharp mentally, walking felt like gliding, a strange feeling and she finally realized that it was the first time since she was 35 years old that she was walking without any effort - no pain, or dragging her legs, not out of breath - this is how healthy people, but it had been so long for Hillary it felt unfamiliar - Ampligen is a fantastic drug
AIDS drugs were fast tracked with very little evidence they worked, but activists demanded access to medication because they made life hell for the people at the Food and Drug Administration - Hillary has talked to the CEO of Hemispherx Biopharma that make Ampligen, and he said "people with ME need to go to the parking lot of the FDA office in Maryland with a bunch of mattresses and set them on fire - something that will get people's attention"
He's right, but we never see that being done - people create petitions that get sent to someone who could care less - in about 2012 the hearings for approving Ampligen occurred and many patients arrived to testify how it had helped them - the FDA voted against approval, but said it was safe - Antony Kamaroff voted 'no' - Beth Unger who manages ME at CDC voted 'no' - so she's been useless
For some unknown reason, people with ME, a disease that destroys lives, are not allowed to have Ampligen - its safe, efficacious - is because medicare would have to pay for it? Is there concern from insurers? Why does FDA continue to deny proof of efficacy? - Hillary knows Canadians are trying to access it via a special access program
Hillary had to stop Ampligen because Hemispherx ran out of supply - it is very expensive to produce and they are a tiny company, and after that only people who could pay for it got access - she was receiving it on a compassionate care basis, she cannot afford Ampligen of $40k year plus infusion / nurse costs
After 3 or 4 months without Ampligen, Hillary's symptoms returned and walking became difficult again - this also adds to Hillary's anger
4 million Americans may have ME, 80% women, apparently their expendable - Hillary has lost about $1.5 million in income because of ME - Ampligen is a sad story, there are others who had Ampligen withdrawn - Hemispherx are using Ampligen in oncology trials in the US and Europe, maybe they can increase access to people with ME
Osler's Web
The only thing that ever helped Hillary, was Ampligen - gammaglobulin used to make her feel somewhat better - she hears talk now of low dose naltrexone, but there was talk about in 1987 - it feels like she's seeing a replay of the 1980s - but people much more activist oriented and they modeled their actions after AIDS activists
San Francisco city council held meetings about ME and invited doctors like Paul Cheney to testify, but you don't see that any more - now they tell their congress person their stories of woe, but Hillary says no one cares about those stories, and they do not change policy - healthy people don't want to hear about it - its not the way to go about making change
The only thing that motivates Hillary to write is ME - but does tweet a lot so is doing journalism by tweet but hates it - because it is simplistic it reduces reporting to the number of characters - twitter induces snarkiness - Hillary would like to do another book about having written Osler's Web, there is a big story of how she interacted with the subjects
The original Osler's Web manuscript was 3,200 pages and she had to cut 1,200 pages - while she often says 'don't write about yourself', in some circumstances you have to write about events you are involved - but her health is a challenge - in many ways Hillary is sicker then 10 years ago, more disabled - it must be ME combined with age
Hillary tries not to get angry and frustrated with herself and has to constantly remind herself that its not that she doesn't want to do 'that', its that she can't do 'that' because of this illness - but since she's been ill for so many years, she sometimes forgets that - Hillary says she's talked more about herself in this interview than any time before
Connect with Hillary Johnson
Facebook: Osler's Web
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Scott Simpson:
Counsellor + Podcast Host + Patient Advocate
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard, train hard, rest hard.
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
I have been living with HIV since 1998, and thanks to research and medications, it is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
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