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Hillary Johnson Show Notes
Always a writer
0:05:30
Hillary born in Minneapolis, Minnesota - lots lakes, father had a huge sailboat and race it every summer - in winter Hillary skied and skated - wonderful childhood but marred by parents divorce when she was 12 - Hillary wanted to live at an elite girl's boarding school - an incredible advantage to attend - later attended UC Berkeley for undergrad degree in journalism, the only thing she ever wanted to do - moved to New York to attend Columbia University for a Master's in Journalism
0:09:30
Hillary has been obsessed with writing her whole childhood - had written 3 novels by the time she finished grade school - Hillary's mother was very literary person, read 2 or 3 books a week, and pass along to Hillary - and she become comfortable with language and was encouraged by her mother
0:11:20
First job was a newspaper reporter for Minneapolis Tribune - but a very sexist environment, only 2 women reporters on staff, Hillary was sexually harassed - hired to Congressional Quarterly in Washington DC, but again sexual discrimination in that workplace
0:13:15
Hillary then worked at Women's Wear Daily, a very trendy newspaper - also covered culture, Hillary assignment - could interview writers she admired, business people (Malcolm Forbes), Watergate prosecutor...fascinating people of the time - did for a couple of years then hired by Life Magazine, a news reporter for 4 years
0:15:05
At age 31, Hillary decided to leave Life to do freelance work - was a contributor to Rolling Stone magazine - wrote for all major New York publications - a wonderful life - traveling back and forth between her 2 apartments in New York and Los Angeles
0:16:30
When in LA in March 1986 to work on her first book - on March 8th woke up sick and that was the end of her journalism career as she had known it - but it took about a year for her editors to get the message because they kept calling asking her to work - Hillary didn't want to believe she was permanently sick
0:17:30
Hillary was soon diagnosed with encephalitis - it was hard to explain to people neurological deficits - on morning of March 8th, within 2 steps of walking she crashed into the wall - she was supposed to go with her fiancee to meet his father and they drove to another city but Hillary was too sick to raise her head to look at him
0:20:00
Hillary had very high fever, extremely sore throat - she couldn't understand the conversation at lunch - went to washroom and passed out and had to be carried out - Hillary lost consciousness multiple times that day, could barely walk - she knew she was incredibly ill but couldn't imagine what it could be
Outbreak
0:21:30
Hillary's fiancee was alarmed - they knew each other about year - Hillary just got worse until she was bed ridden, unable to walk - he took her to see a doctor, but had to be carried - by chance, this doctor had been talking with his friend at the CDC (Centre for Disease Control) so was aware of Hillary's symptoms but didn't have a name for it, but had been seeing 20 to 30 patients a month with identical symptoms
0:23:30
Hillary was wheeled into the waiting room - after 2 years of Hillary being severely ill, her fiancee moved on and the relationship ended and she moved back to New York
0:25:15
Hillary has been sick for 35 years and has had many, many experiences of outrageous behavior by doctors - the first doctor she saw said he didn't know what was making her sick, but that she should be fine in 2 years but don't come see me before then - Hillary realized she was really alone with her illness
0:26:50
About 6 months later, Hillary felt like she was dying and called that doctor - he was very angry, told her not to call him because he has seriously ill patients in his waiting room - Hillary was shocked and realized she was alone with her illness
0:27:50
An article in the LA Times about an outbreak in Incline Village, Nevada - Hillary later wrote a book about the Incline Village outbreak: in 1984 the rich enclave had an outbreak of ME (myalgic encephalomyelitis) - large percentage of people fell it, perhaps 300 and more who never went to see the town doctors - 6 doctors in town, but only 2 were highly competent: Paul Cheney and Dan Peterson, both knew a lot about infectious disease
0:30:30
The outbreak got a lot of publicity in mainstream media - Hillary would find out later the CDC had been receiving calls from all over the US and the world about this disease for quite a long time before Incline Village - but CDC simply did not want to believe it was a disease, they called it hysteria and tried dismiss it - a very political move
0:32:30
CDC sent 2 investigators - one very inexperienced - the more experienced stayed 5 days and did not interview any patients - the other one, Gary Holmes, stayed about 10 days and examined a few patient, unwillingly - Dr Cheney said Holmes preferred reviewing charts in the office and didn't want to meet patients - Hillary interviewed those patients, and they felt like they were imposing on Holmes
0:33:45
Hillary later uncovered that the CDC had been receiving reports about this for quite a few years, so was already spreading, especially on the US coasts - San Francisco and Los Angeles were seething - so Incline Village was not ground zero - its importance was that the CDC had a chance to do serious science, but they didn't do that
0:36:30
Because so many patients were women, CDC decided it was hysteria - except there were men sick too - more cynical explanation is the AIDS pandemic already caused a lot of concern, and the government couldn't bear to acknowledge it
Banned from CDC
0:38:30
Prior to the CDC involvement, previous outbreaks had no hint of a psychosomatic explanation, but was a transmissible disease - no other explanation why the disease would explode - the US government probably knew it was infectious based on immunology - one of the first findings in ME in very low natural killer cell (NK) function, published in 1992 - only see low NK in cancer and infection
0:40:30
Many examples of ME research that scream infection - because ME happened concurrently with AIDS is an important clue that should be examined - Hillary says there was concerning at the CDC about long term disability payouts if credence was given to ME - Hillary accessed via FOI (freedom of information request), letters of 5 -10 scientists who worked with Holmes to come up with a name for the disease
0:43:30
They considered 'myalgic encephalomyelitis' and ruled it out because it implied it was a real, organic disease and they didn't want to do that, it was clear in those letters - but the all time favorite name was 'chronic fatigue syndrome' (CFS) and it did not imply it was infectious, so no public panic - the term inspired hatred of the people with this disease
0:45:30
People with ME were renamed as having CFS and experienced ridicule, dislike, disgust, outcast - the name had an incredibly powerful impact - Dr Anthony Kamaroff at Harvard was key in the naming, but has subsequently apologized - he claims at the time he did not foresee how damaging the name would be - but no one else has apologized
0:47:00
Stephen Strauss and Dr Nelson Gantz are both dead - Holmes tried to engage a famous infectious disease specialist, Elliott Keith, and he was part of naming process for a while, but when they decided on CFS he wrote a letter of contempt and withdrew his support and asked if they were trying to create another psychological syndrome
0:49:00
Hillary's book about this is titled: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic - Hillary was forced to use CFS in the title in 1985 for marketing purposes - the book was written for the general public, but mostly read by ME patients - took 10 years to write while very ill and poor - $700 / month for a decade - its still available on Amazon, but Hillary never made a penny from the book
0:52:00
Back to Hillary's personal experience: she was feeling like she was dying and called her doctor and he dismissed and chastised her - Hillary says what is different in 2019 is social media
0:53:30
Patients don't feel as isolated as in the 80s - a CDC supervisor referred to Hillary as 'live and in captivity', reducing her to an animal - his point was that it was rare, there was no outbreak - he later banned Hillary from the CDC, that didn't stop Hillary and she set up office in the lobby and use the public pay phone
Encephalitis
0:56:30
Hillary asked many CDC scientists for an interview and interviewed quite a few after she was banned
0:58:15
Hillary was very ill for 6 months, couldn't walk, barley lift her head off the pillow, had already been diagnosed with encephalitis - but she was still being asked to work, and didn't want to disclose how seriously ill she was - the editor at Rolling Stone kept asking
1:00:00
Hillary made the connection between cases in Los Angeles and in Incline Village and mentioned to her editor at Rolling Stone that it could be a big story and he wanted her to explore it - as ill as she was, she began to investigate and talked to the person in charge of epidemiology of LA county and she said they were getting lots of calls about this disease, more then AIDS - she said she was very concerned
1:02:00
But everybody was working on AIDS, and there was no staff to work on ME - Hillary dragged herself to Incline Village and spoke to Paul Cheney - Hillary realized her life was about to change - she felt Cheney had almost solved the disease in '86
1:03:30
Cheney had done a lot of investigation and gathered much info - Hillary knew Cheney was an extraordinary figure and a book could be built around him - he was primary figure and inspiration - but the story got bigger than Cheney - she has 100s of hours of interviews with Cheney
1:05:30
Hillary also interviewed Dan Peterson a lot, who was resistant to speak to a journalist but warmed to and trusted Hillary
1:06:30
Hillary's most outrageous experience with health care was with a woman cardiologist - Hillary had thyroid cancer in 2008, it was like a head cold compared to ME, it was 'no biggie' - given what she'd been through in 20 years with ME - cancer was not a surprise - the only thing that frightened her was the anaesthesia which can be difficult for ME patients
1:09:30
Hillary was ready to die, having been so ill - after 35 years its hard to remember what normal is
1:10:30
The cardiologist found abnormal EKGs - myocardial 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
END OF PART ONE OF INTERVIEW
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