The Puzzle Solver by Tracie White

[dave30th]

with some recent discussion here that seemed to suggest the psychologising of ME/CFS was a largely British phenomenon, this book made it clear that it has been just as bad in the US, with very sick patients being sent to psychiatrists,

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.

 

[Trish]

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.

 

[dave30th]

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.

I didn't think you meant that! It was something that I thought about when i read it.

 

[Hutan]

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)

 

[Kalliope]

Stanford Medicine - SCOPE
I wrote a book about a scientist's journey to save his desperately ill son by Tracie White

My initial instinct to turn away from such tragedy slowly transformed into a desire to share this story of suffering and grief, of social injustice and of a deep belief in science.

And, at its core, it's even more than that. This is also a story of how a family's love for each other has brought hope to so many.

 

[Kalliope]

Trial by Error by David Tuller: A Q-and-A with Tracie White, author of The Puzzle Solver

One of the reasons I love writing nonfiction is because I learn so much personally from listening to other peoples’ stories. This tale, in particular, has taught me so much. I learned not only about the travesty of how patients with ME/CFS have been treated unfairly for decades, but how patients with chronic illnesses survive despite this. It’s a level of bravery and persistence that I so admire. I learned so much from Whitney–in particular, how he managed to find joy in the darkest of places. How he sacrificed, often his health, to help others.

 

[Kalliope]

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.

 

[Sly Saint]

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/

 

[Perrier]

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?

 

[Sly Saint]

from an email:

Read the teaser in People Magazine now.

(Be sure to look for the full print version, now available in stores, or in digital as soon as it is available!)



People magazine will also be airing a TV show featuring me and my family to accompany the teaser article on April 5, 2021 starting at 7pm ET / 4PM PT.



You can stream the show on April 5 at 7pm ET here. You can also watch the show on People.com, PeopleTV app and People's Facebook, Twitter and YouTube accounts.



If you can’t tune in on April 5, the feature will be made available for later viewing here.


I would also like to share with you a video update about exciting research progress happening at the ME/CFS Collaborative Research Center at Stanford!



Watch it now