It's been terrible for lots of patients in the US, and certainly that was the general sense of the conclusion of the CDC's Tahoe investigation. I think in the UK they took the premise provided by the CFS framework and ran farther with it to construct or formalize the CBT/GET paradigm and flesh out the theoretical underpinnings and enshrining them in national policy. That fleshed-out framework also then had influence back in the US. The UK is responsible for the fully articulated framework. Certainly US contributed enormously to the overall notion that it is psychological or psychiatric. It was a mutually reinforcing phenomenon, I figure. I found the book to be moving and effective in its account of the Davis-Dafoe family story. It was an easy read and will be informative to many who will be touched by the human aspects. I think she made an authorial choice to focus on the relationships and the emotional drama, including her own immersion with the family, and not go too deeply into explaining all the medical complexities--which would have made it a much longer book.
I agree the authorial choice to focus on the human story makes sense for the general reader. I wasn't intending to suggest it was a bad choice.
An off-topic strand of conversation has been split into a new thread here: The influence of the biopsychosocial (BPS) view of ME/CFS in government guidelines and medical practice in different countries (past and present)
Stanford Medicine - SCOPE I wrote a book about a scientist's journey to save his desperately ill son by Tracie White
CNN A Stanford scientist's quest to cure his son could help unravel the mystery of Covid-19 long haulers by Ryan Prior Quote: - We did a study on severely ill patients that we're still working on, and one idea we got from the study is that severe patients are likely to have what's wrong with them be more easily detectable. Doctors say they do their tests on some patients and there's nothing wrong with them. You just need to go to the more severe patients where you're sure to find something. There's actually a heck of a lot wrong physically wrong with them. It's a little overwhelming. That's why it's taking so long for us to analyze all the data. About a third or so of the metabolites (small molecules in the blood involved in metabolism) are more than two standard deviations away from normal (meaning that the abnormalities are very likely due to disease rather than random chance). And the more we look, the more we find.
Renowned Scientist’s Son Describes His Chronic Fatigue Syndrome: 'A World of Pain, Loss and Agony’ " Whitney Dafoe spent most of his 20s visiting doctors and undergoing tests to find an explanation for why he felt so weak and exhausted. "I was open to all possibilities," recalls the one-time globetrotting, aspiring photographer, who often spent months at a time backpacking through remote locations around the world, only to return home run-down and ill from his treks. "I just wanted answers," he tells PEOPLE. "So many doctors told me that nothing was wrong with me because the lab results kept coming back negative. I even tried to talk my therapist into the idea that I had a psychological illness, but he would have none of it." It wasn't until 2012, when Whitney was 29, that a doctor confirmed he was suffering from a severe case of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a mysterious disease believed to affect as many as 2.5 million Americans." full article here: https://people.com/health/renowned-scientists-son-describes-his-crippling-chronic-fatigue-syndrome/
Hi Sly Saint. I'm not sure this is the full article. Here is what Dr. Janet Dafoe posted yesterday evening: "Second online article in People magazine. The more extensive print version dated April 12 is on newsstands now." There is nothing here about what Dr Davis is working on, or did I miss something as usual?
