CNN front page story about Ron Davis and Whitney Dafoe

[Alvin]

I'm torn on this because illness doesn't look like anything. For all the "invisible illness" thing, it's pretty much a universal problem. What does cancer look like? It doesn't have a "look". Many people learn they have cancer a few weeks before they die precisely because it doesn't look like anything. The image people have of cancer isn't even cancer, it's the treatment.

Showing the disease is extremely difficult aside from severe patients, which itself is difficult for other reasons, the first of which is finding them. People are terrible at understanding the cascading effects of limitations they don't experience. "You spend your days in bed? Awesome!" No, think about that for a while and, no, it's definitely not even close to be awesome. One day, yeah, maybe, not for me but whatever. Years? Fuck no!

I think always it's the scale and severity that has an impact. The equivalent of a mid-sized country, hundreds of billions in economic burden, people usually taken in their youth, etc. This is work that takes serious communications skill to distill in a way that people understand. Even with the shoes we can't really show it well because it would literally millions of pairs of shoes to make it meaningful, people simply don't appreciate how gigantic the problem is, especially physicians.

I agree but pictures convey powerful messages. For years i was hiding my symptoms, the exhaustion spells, the motor control problems, the shakes, the fatigue and so on. Now i let them show so people can see for themselves what i live with plus the severity makes them harder to hide. Seeing me using a scooter at the grocery store, needing to sit down or lie down frequently, the muscle weakness, watching me stumble or the couple falls i've had, seeing me look exhausted or watching my neurological tics sends powerful messages.
Its embarrassing, it bothers me a great deal but seeing is believing.

It's the medical professionals we have to convince because it's their contempt for us that gives the green light for others (especially gullible journalists and skeptics) to treat us like dirt and it's their advice that convinces politicians to keep on ignoring us. Medicine has a veto over which diseases get taken seriously and it is exercising that veto to crush everything we do. How to do that I have no idea but until we have medicine on our side, this is a political issue and we don't have the capacity to do that.

Its both. When the public demands action governments act. Squeaky wheel gets the grease. When medical professionals say we need research funding and stop treating colleagues as below contempt and sabotaging their research requests we get more legitimacy.
Discrimination comes from people and professionals and we need to change both.
As i said earlier MS is good analogue for ME here, it went from imagined to real and eventually the public became aware of it and real research money is now spent on it. Not nearly enough IMO but the longest journey begins with a single step.

 

[Perrier]

I'm torn on this because illness doesn't look like anything. For all the "invisible illness" thing, it's pretty much a universal problem. What does cancer look like? It doesn't have a "look". Many people learn they have cancer a few weeks before they die precisely because it doesn't look like anything. The image people have of cancer isn't even cancer, it's the treatment.

Showing the disease is extremely difficult aside from severe patients, which itself is difficult for other reasons, the first of which is finding them. People are terrible at understanding the cascading effects of limitations they don't experience. "You spend your days in bed? Awesome!" No, think about that for a while and, no, it's definitely not even close to be awesome. One day, yeah, maybe, not for me but whatever. Years? Fuck no!

I think always it's the scale and severity that has an impact. The equivalent of a mid-sized country, hundreds of billions in economic burden, people usually taken in their youth, etc. This is work that takes serious communications skill to distill in a way that people understand. Even with the shoes we can't really show it well because it would literally millions of pairs of shoes to make it meaningful, people simply don't appreciate how gigantic the problem is, especially physicians.

It's the medical professionals we have to convince because it's their contempt for us that gives the green light for others (especially gullible journalists and skeptics) to treat us like dirt and it's their advice that convinces politicians to keep on ignoring us. Medicine has a veto over which diseases get taken seriously and it is exercising that veto to crush everything we do. How to do that I have no idea but until we have medicine on our side, this is a political issue and we don't have the capacity to do that.

Davis' words are powerful in that regard. They have to be amplified. Eminence matters, unfortunately, and in that regard the silent eminence on our side is many times more credible than the jerks who have built a career on crushing us, even the celebrity-physician whose claims to fame are major disasters.

Thanks for the details. Yes, you are correct. But remember how we were all shook up by AIDS. I will never forget Nureyev being held up by two chaps on either side of him. Things like that really had an impact and imparted fear. In the case of ME, the disease has been so mocked, so disparaged, so dismissed that these images are useful. Jen Brea did a masterful job in her film in this regard. In fact, she states that it was only when her doctor saw the film clips that his jaw dropped. So, in this case, in the case of ME, these images are more than useful. They counter the negative effects of the awful CFS name.

 

[Andy]

Article is on the Genetic Literacy Project website,
https://geneticliteracyproject.org/...on-a-quest-to-solve-chronic-fatigue-syndrome/

 

[Mithriel]

Just a couple of points. There are people who manage to continue working or studying full time as long as they rest adequately in the evenings and weekends. Maybe not many but a friend who went to a local support group in the 90s managed to work till retirement with a lot of family support.

Also ME has never been considered as progressive in everyone. There are people who stay the same for years.

 

[Sly Saint]

Jen Breas account of meeting Whitney
Meeting Whitney

I’ve spent a lot of time imagining Whitney Dafoe. I’ve looked at as much of his photography and as many photographs of him as I could. I read everything written about him in the public domain. I’ve asked his parents, Stanford geneticist Ron Davis and child psychologist Janet Dafoe, and sister, Ashley Haugen, everything I could think of about Whitney, before, when, and after developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

I did this because I was curious and because I wanted to imbue the portrayal of Whitney in Unrest with as much humanity and complexity as possible, even though I have never been able to actually meet him. I’ve been to his house multiple times, but my very presence in his room would have been more than he could bear.

 

[Trish]

A new thread has been started to discuss this article here.

 

[Sly Saint]

The Challenge: He is A Father, A Caregiver and A Scientist Trying to Save his Son and Others With ME/CFS or Chronic Fatigue Syndrome

Rose Duesterwald

Ron Davis and his gene-sequencing technologies were mentioned years ago in The Atlantic alongside Elon Musk (SpaceX) and Jeff Bezos of Amazon fame. Since then, Davis has amassed over 30 patents for his technologies.

Davis, now age 77, recently explained to CNN that he has put aside projects that he had been working on and is now literally devoting his entire life to caring for his son and finding a cure for myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS.) General translation is “painful inflammation of the brain and nervous system.”

It took years and many visits to doctors before discovering that Davis’ son, Whitney, has ME/CFS. Whitney, now age 35, has been bedridden for almost ten years. He is completely immobile, receives nourishment through a feeding tube and lost his ability to speak five years ago. His parents attend to his needs throughout the day and night.

full article here
https://patientworthy.com/2019/06/05/challenge-father-scientist-cfs-chronic-fatigue-syndrome/