Books about ME/CFS (to help people understand)

[Yann04]

I have a friend who asked me what book to read to understand ME/CFS and “the situation”.

They are not a medical professional or psychiatrist, they are just an average educated person who wants to “learn about” ME/CFS.

I really have no clue what to send them.

I’d preferably like something that explains very severe states well.

And something that is neither 100% political analysis or 100% medical.

 

[Utsikt]

I have not read it, but maybe the book about Davis and Whitney if others believe it’s appropriate.

I also liked this article from 2016, when Whitney was in his worst state:
https://stanmed.stanford.edu/the-puzzle-solver/
It’s mostly about Davis, but there are some good descriptions as well, e.g.:

“My son Whitney woke me this morning to inform me that he is dying,” his father, Ron Davis, PhD, posted on the Facebook page for the Stanford Chronic Fatigue Syndrome Research Center that day. “Whitney has severe chronic fatigue syndrome (CFS). He did not say he is dying — he cannot speak. He did not write he is dying — he cannot write. He used Scrabble tiles to spell out his message. I did not answer him — he cannot tolerate anyone speaking to him.”

He doesn’t enter the room right away. Instead, he sits on a chair outside the door in the hallway, watching through a keyhole for Dafoe to find the strength to sit up and pull a blanket over his shoulders, signaling that it’s OK to come inside. Dafoe can hear Davis in the hallway. He knows he’s there. And slowly he prepares. Sometimes Davis waits, and he waits

Janet Dafoe has saved dozens of notecards written by her son from his sickbed when he still had the energy. In January 2015, he tried to explain to his parents what it was like when they entered his room, why it took him time to prepare. He wrote:

Someone in room feels like wind is blowing THROUGH me pulling me away like I’m made of sand and getting blown away… Draining but it goes deeper than it should. There is no part of me that is safe from it. I think it’s just because of how little energy I have. When I’m alone I can ration it and think slow, use less mental energy…

And so Davis continues to sit in the hallway, waiting for the signal to enter.

“Once you come in the room he just totally doesn’t move at all,” Davis says. Dafoe wears headphones to block out any sound. He hides his eyes under the bill of his cap. “He doesn’t see you but he knows you are there. I don’t know what he does to keep from reacting.

 

[Yann04]

I have not read it, but maybe the book about Davis and Whitney if others believe it’s appropriate.

I also liked this article from 2016, when Whitney was in his worst state:
https://stanmed.stanford.edu/the-puzzle-solver/
It’s mostly about Davis, but there are some good descriptions as well, e.g.:

I skimmed much of the book’s thread and it looks far better than I was expecting. Thank you for the suggestion @Utsikt I will send it to my friend.

 

[EndME]

I guess there's also some videos if your friend is interested in those. I think the recent video my @Grigor was well received.