{"id":146085,"date":"2021-01-02T22:46:00","date_gmt":"2021-01-02T19:46:00","guid":{"rendered":"https:\/\/en.buradabiliyorum.com\/how-a-scientist-finally-proved-chronic-fatigue-syndrome-is-real\/"},"modified":"2021-01-02T22:46:00","modified_gmt":"2021-01-02T19:46:00","slug":"how-a-scientist-finally-proved-chronic-fatigue-syndrome-is-real","status":"publish","type":"post","link":"https:\/\/buradabiliyorum.com\/en\/how-a-scientist-finally-proved-chronic-fatigue-syndrome-is-real\/","title":{"rendered":"#How a scientist finally proved chronic fatigue syndrome is real"},"content":{"rendered":"

“#How a scientist finally proved chronic fatigue syndrome is real<\/strong>”<\/p>\n

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The once-healthy 31-year-old man lay in his bed, unable to move, eat or even tolerate sound.<\/p>\n

He couldn\u2019t speak \u2014 his only method of communication was using Scrabble tiles to spell words.<\/p>\n

As pain and fatigue wracked his body, he spelled out a plea with the game<\/a> pieces: \u201cCan\u2019t take care of myself. Don\u2019t know what to do,\u201d he wrote in December 2016. Then he added a five-letter coda: \u201cD-Y-I-N-G.\u201d<\/p>\n

Whitney Dafoe was suffering from a mysterious ailment, an affliction with no known cause, cure or treatment. It can suddenly strike healthy people with a wide spectrum of symptoms, rendering an unlucky percentage almost completely incapacitated.<\/p>\n

The disease is known as chronic fatigue syndrome or more specifically ME\/CFS. Once derided as being all in patients\u2019 heads, experts are now coming around to recognizing it as a real biological disease. Whitney is helping with that fight.<\/p>\n

\u201cHis condition was so shocking that it was unbelievable,\u201d author Tracie White told The Post. \u201cThere\u2019s a reason doctors sometimes don\u2019t believe patients. It\u2019s such an odd disease.\u201d<\/p>\n

White\u2019s new book \u201cThe Puzzle Solver: A Scientist\u2019s Desperate Hunt to Cure the Illness That Stole His Son\u201d<\/a> (Hachette Books), out Tuesday, chronicles not only Dafoe\u2019s tragic story but that of his father\u2019s efforts to investigate his illness.<\/p>\n

\n
\"Medical
Medical researcher Ron Davis with his son Whitney.<\/figcaption>
Janet Dafoe<\/span><\/figcaption><\/figure>\n<\/div>\n

Growing up, Dafoe was certain his father, Ron Davis, was the smartest man in the world. (Davis, the co-founder of the Stanford Genome Technology<\/a> Center, and his wife split their last names between their two children.)<\/p>\n

On family hikes or long road trip<\/a>s together, Dafoe and his sister used to play a game they made up called \u201cron.com,\u201d in which they\u2019d ask their father random questions \u2014 how high is that mountain, how deep is that lake \u2014 and marvel as he produced the correct answer after quick mental calculations.<\/p>\n

After Dafoe grew increasingly sicker and was diagnosed with ME\/CFS in 2011, it was his dad that he turned to.<\/p>\n

\u201cWhitney\u2019s faith in Ron was unshakable,\u201d White writes. \u201cWhen Ron came home in the afternoons to help care for Whitney, the two spent hours trying to figure out answers.\u201d<\/p>\n

His son\u2019s disease was incredibly painful to him, and Davis didn\u2019t like talking about it. He turned to science<\/a> instead, devoting himself to researching the disease.<\/p>\n

\u201cIt is enormous pressure,\u201d Davis says in the book. \u201cWe have to figure this out very quickly because millions of people are suffering and my son is dying.\u201d<\/p>\n

One big question is what triggered his son\u2019s illness. Dafoe was a photographer who had traveled the world. At age 23 during a trip to India, he had been hospitalized with a stomach ailment. When Dafoe returned to America he had wasted away to 115 pounds. <\/p>\n

\n
\"Whitney
Whitney Dafoe goofing around before chronic fatigue syndrome left him bedridden.<\/figcaption>
Ashley Haugen<\/span><\/figcaption><\/figure>\n<\/div>\n

His father suspected he\u2019d been infected by a parasite. Whatever the cause, he was never the same.<\/p>\n

He got worse and worse until he was nearly comatose, living alone in his parents\u2019 back bedroom and being fed by a tube. He told his family he thought about ending it all. \u201cI\u2019ve lost so much of what makes me human,\u201d he confessed to White.<\/p>\n

Davis grew more and more determined to help his son. But one big stumbling block proved to be money. While other diseases, such as multiple sclerosis, received $100 million in funding in 2011, for example, ME\/CFS got just $6 million.<\/p>\n

Davis had to start small. Once a week, he\u2019d draw a vial of his son\u2019s blood and carry it out to a work shed behind their California house. He\u2019d spin the blood in a centrifuge, then drive it to his lab at Stanford for analysis.<\/p>\n

The first break came in 2011. Davis won the Gruber Prize, a prestigious award for his \u201cpioneering work in genetic engineering.\u201d The recognition was nice, but what really app<\/a>ealed to Davis was the $500,000 that came with it.<\/p>\n

He used the money to fund his ME\/CFS research, hiring other scientists into his lab by 2013.<\/p>\n

Davis lived and breathed the disease. At night, he\u2019d literally dream of science experiments. He\u2019d come home from work at 4\u2009p.m., take care of Whitney before turning over the caregiving to his wife at night. He\u2019d then get back to work, \u201cdisappearing into the library with his laptop, lost in the science and hunting for answers.\u201d<\/p>\n

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\"Book<\/figure>\n<\/div>\n

Finally, in the spring of 2015, a breakthrough. Davis opened his computer to find the results of tests on his son\u2019s blood he\u2019d been waiting two years to get.<\/p>\n

\u201cI thought, Wow,\u201d he says in the book.<\/p>\n

The results left him and his wife in tears.<\/p>\n

Davis had discovered that the processes in each cell that convert food to energy were not working correctly in his son. The scientists had \u201cfound scientific proof of ME\/CFS,\u201d clearing a major hurdle for a disease that many still today deem imaginary.<\/p>\n

What\u2019s more, Davis and his team developed a simple blood test to detect the disease that could one day be used in doctor\u2019s offices.<\/p>\n

Today, Dafoe, now 37, remains bedridden and immobile, but with the help of a drug called Ativan used to treat anxiety, he now has short bursts of energy in which he\u2019s able to write e-mails or blog posts, though he still cannot speak.<\/p>\n

\u201cI want to push the ME\/CFS community forward,\u201d Dafoe wrote to White recently. \u201cI want to inspire people to keep fighting and not give up because I know a cure is coming soon.\u201d\n <\/p><\/div>\n

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Source<\/a><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

“#How a scientist finally proved chronic fatigue syndrome is real” The once-healthy 31-year-old man lay in his bed, unable to move, eat or even tolerate sound. He couldn\u2019t speak \u2014 his only method of communication was using Scrabble tiles to spell words. As pain and fatigue wracked his body, he spelled out a plea with…<\/p>\n","protected":false},"author":1,"featured_media":146086,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"fifu_image_url":"https:\/\/nypost.com\/wp-content\/uploads\/sites\/2\/2021\/01\/210102-cfs-scientist-index.jpg?quality=90&strip=all&w=1200","fifu_image_alt":"","footnotes":""},"categories":[70897],"tags":[88365,71502,17209,88399,73461,88400,5050],"class_list":["post-146085","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-1-2-21","tag-authors","tag-books","tag-chronic-illness","tag-diseases","tag-illnesses","tag-scientists"],"_links":{"self":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/posts\/146085","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/comments?post=146085"}],"version-history":[{"count":0,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/posts\/146085\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/media\/146086"}],"wp:attachment":[{"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/media?parent=146085"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/categories?post=146085"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/buradabiliyorum.com\/en\/wp-json\/wp\/v2\/tags?post=146085"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}