CNN front page story about Ron Davis and Whitney Dafoe

CNN has published a story on its front page entitled Human Genome Project pioneer seeks cure for Chronic Fatigue Syndrome to save his own son. The front page link features a picture of Ron Davis. This is the story referred to in the thread Action alert for upcoming CNN reporting. It's a long, in-depth story with plenty of pictures, and it looks excellent to me. It was written by a CNN employee who has had ME/CFS for the past dozen years (Ryan Prior); his story is linked to at the bottom of the article.

 

Excellent report by Ryan. Great that this is on the front page at CNN.

 

Great work on what Whitney appropriately calls “totally body shutdown”, not the no-meaning —whatsoever “CFS.”

Hope he improves and hope the report draws a lot of attention.

 

I’m posting this on my FB feed tomorrow. This month I’m a FB warrior for ME/CFS awareness hehe! I’m so grateful for the work he is doing. How tragic our gain of this brilliant mind and team has come at such a personal cost to his son and family.

 

That was a great article. It always feels kind of unreal to me when I`m reading something thats not mind over matter related or concerned with shaming patients

 

Thank you Ryan Prior, and thank you Ron Davis, Janet Dafoe, and Whitney!

Your dedication, kindness, knowledge and skills are so very much appreciated.

 

Over the last few hours, this story has been elevated from one of the leading stories on CNN's front page to the main story in the upper left corner, with a bigger headline and picture than any other story on the page. (U.S. edition only.) It's now impossible to miss this story, and the main title (He led a science revolution. Then his son got sick) would seem to be irresistible to anyone with a strong interest in science or medicine. As far as I know, such accurate and in-depth coverage describing the seriousness of ME is unprecedented in the mainstream media anywhere in the world.

Amen. It is so gratifying to see the coverage being received on a large-scale basis due to the unflinching efforts of the people involved. Positive publicity like this can't be bought.

 

Damn, still there. That's a good chunk of the day.

Granted, people don't watch the news as much on a Sunday, especially on a holiday. But this is great. Awesome work from all those involved!

 

https://twitter.com/user/status/1127720116093898753

 

It's mentioned in the daily email newsletter from Nature.

ETA the word newsletter.

 

Thanks for posting; and now the obvious question: how is it that the world is not galvanised enough to realise that this is an emergency; and that there are thousands upon thousands of people in this severe state.

 

To most reading the story this is a "new" problem since they have never heard of it or if they have they didn't realize it was a biomedical and not psychosomatic as they heard somewhere. And it does not affect them, their neighbourhood is not on fire and they are not being told to evacuate. If stories keep coming out and they keep seeing people in serious condition then they will start to take notice and to care. With enough exposure they might eventually realize they know someone with this but didn't know how serious it is.
Sometimes you get lucky and a single case goes "viral" and catches the public's attention but with so much going on these days its harder for anything to gain traction unless its acutely serious to the reader. Going viral is like winning the lottery.

 

There were two points about the article that were absent: the number of people affected, and secondly--stating that some people work in offices and still have the disease. The first point would have highlighted how large a problem this is. The second point--is bizarre in my view. I don't know a single person with ME who is working full time in an office. This is misleading. Otherwise, it was excellent. The other issue is that the disease is progressive, slowly, but progressive nevertheless. That too was not mentioned. But Alvin, I know what you mean. But this disease is quite old, and if it weren't for Dr Davis and family, there still would not be press.

 

They did say it affects 1% or 1 in 300, an error that needs correcting. I don't know how to contact them to point that out, there is no contact the author link.
I agree that they miss some of the details but its very hard for one article to convey everything. I do hope there is more in the future that explains that its progressive, that it moves at different rates, that people sometimes can work full time then crash for evenings and weekends or only part time or end up bedbound and everything in between.

 

Anchoring. Myths have a very long shelf life. Which is why having promoted them in the first place was criminally negligent, without evidence and by people with a complete misunderstanding of the issue.

HIV denial persists to this day, even now that AIDS can be successfully managed. Some are trying to bring back vaporizing lead in the atmosphere. Humans are just weird like that.

 

Speaking of which, there was a story (yesterday, I think) about how Los Angeles residents are adapting to, well, regular fires burning down whole neighborhoods. Not much urgency to act on climate change and better zoning policies. Even the neighborhood being on actual fire is something that people will accept as long as their own house will probably be fine.

It's especially hard to let go of myths about how illness is a personal failure and us being ill is proof that they are good people. It seems especially strong within the medical profession, they may be always tired, "like us", but they can handle it, unlike us. Our brains are still wired to live in small hunter-gatherer tribes, afraid of shadows that actually hide lethal dangers. We have a long ways to go.

 

Indeed.
I am very much reminded of MS, it was hysterical paralysis, and i'm sure even after it was proven biological it took a long time for public sentiment to catch up to scientific knowledge. Today most people have heard of MS, may know its autoimmune and usually know that its crippling and incurable. That is where we will have to get to.

 

In this media age, I guess more alarming photos are needed. There are so many severe case and of course, it is not clear if they would allow media into the house. But, alas, in this day and age, this gets attention.

 

They do say a picture is worth a thousand words

 

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.