Osler’s Web; Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. (My copy has a plain cover rather than the rather disturbing -but accurate one shown here)
Here is a book that shines a light on what medicine is playing at with people severely sick with ME, called Chronic Fatigue Syndrome just to laugh at “tired women”. If you want an insight into how 21st Century medicine can make medieval hedge witches look like well trained professionals, this is the book. Ms Johnson spent a long ten years researching and writing this thick tome of evidence with little commentary from herself, as she lets the facts speak for themselves.
From 1984 to 1994 Johnson follows the unfolding stories of the doctors and scientists who tried to get answers for the patients whose lives were being devastated by this disease.
The inside of the Centre’s for Disease Control is not that surprising. There’s a lot of status quo pen pushers and people who do not want interesting times to happen to them. They will ignore, shift responsibility and generally muck about rather than do anything worthwhile. The CDC is well known for being very late to every disease and having little control on anything. So the fact that the CDC were so out to lunch over the outbreaks of ME across America isn’t surprising. The fact that the NIH are not better is also not surprising (I worked for the NHS remember).
What was shocking was the utter maliciousness of staff there, especially Stephen Straus whose vindictiveness was irrational. (He died in 2007, Kyrie Eleison) This man’s single-minded misogyny and total lack of integrity caused so much damage to the research and care of patients and shockingly because he was a “big gun” his lack of scientific rigour or basic honesty leaves patients without care still.
Walter Gunn who had worked hard retired from the corrupt CDC before his time, “his resignation testament to the agency’s continued negligence in the the realm of the disease as well as Congress’s failure to regulate the agency.” (p 556)
A 1992 survey conducted by clinical psychologist Leonard Jason of DePaul University suggested that close to 40% of CFS patients eventually dropped out of mainstream medicine altogether. Brutalised by their reception in doctors’ examining rooms, they ceased consulting doctors, preferring instead to wait out their disease away from the medical profession’s unhelpful counsel. (p584)
The fact that this survey is so accurate and still true today is an indictment of the medical profession. As an ex-nurse I am utterly ashamed that seriously ill people can be treated like this and nothing is done to stop it. Another psychiatrist named Goodrich was married to a wife, also a psychiatrist, with serious ME. He was troubled by the callous responses doctors gave his wife. I know what she has gone through because I have received those responses from arrogant self serving medics who see the dx “Fibromyalgia and ME” and immediately act like I’m a non-person, disposable.
Goodrich was angry enough and realistic and courageous enough to stand up for patients with ME. He pointed out that AIDS patients had suffered the same pompous refusal to accept their situation – especially children with AIDs – as ME sufferers at that time. While AIDs had to be faced as it killed it’s patients fairly quickly and fairly often, he thought ME wasn’t killing enough people even though the suicide rate was so high, so the medics were too thick to see it’s devastation. Goodrich added,
A case can be made that CFS is a worse disease than AIDs at least for the 50% of cases that are severe, since the patients’ lives are totally disrupted by pain, mental confusion, physical weakness and other[symptoms)…Such patients often envy AIDS patients who can anticipate eventual relief of symptoms through death.” (p.585).
Johnson compares the shoddy standards of the CDC over ME/cfs and the doors shut in the faces of service veterans struggling with what came to be known as Gulf War Syndrome.
Apart from the rare cancers like Burkitt’s and some others, deaths from ME were mainly due to suicide in those first years. Johnson notes that it was the deaths, especially high profile deaths with AIDS that finally forced the CDC to take note.
More than 20 years down the line we are more aware that people are dying of ME and it’s related symptoms, especially heart failure and stroke. But still the professionals are not catching up.
When the book Emerging Infections was published, Johnson notes, it was made clear by its scientist authors that the CDC was nowhere near ready (and some might add or willing) to face emerging new or renewed infections. Surveillance measures even for listed diseases were pretty poor.
The heroes of this story are real doctors like Dan Peterson and Paul Cheney who were on the front lines of the Tahoe outbreak. Dr David Bell who watched young children and teens have their health and lives ripped away from them. Elaine deFreitas who discovered the virus clues and whose protocol the CDC utterly refused to follow, so that her work was not replicated and proved.