Open Medicine Foundation (OMF)

The fact that new articles suddenly started appearing again about Ron Davis and his family yesterday, and also Whitney’s heavy hinting that something good is coming, and Agy Lena’s post that someone posted, makes me think something really good is coming and they’ve found something new / confirmed something they hadn’t properly confirmed before. I really hope so! We need some good news! It doesn’t sound like just another hypothesis. I don’t know what it can be to be honest.. but the fact they’re dropping heavy hints makes me feel something has happened. Whitney is even talking about a cure! The OMF have never said anything about a breakthrough before so this seems different.

I just told my boyfriend and he said to just wait and see, but that he hopes it’s good news. I guess we will know soon enough. I feel excited though.

 

The most common ME headline ever?

 

Regarding Davis apparently saying that he thinks ME is autoimmune: remember, this was not a direct quotation. It's the journalist''s indirect reporting of what they think RD said. I wouldn't be surprised if it's a misunderstanding.

 

I think they have, sorry. I got really excited a couple of years ago about a supposedly imminent breakthrough... Did not happen.

 

Oh What did they say it about last time?

 

I can't remember sorry.

 

This represents your opinion— it was not the conclusion of the authors of the study.

 

Clickbait sadly

 

Is this good news about The Puzzle Solver, by Tracie White, a new book about Ron and his efforts to save his son?

https://www.booktopia.com.au/the-puzzle-solver-tracie-white/book/9780316492508.html

The book seems to be on many outlets right now.

 

I agree with you. I'm also excited about this.

But if this turns out to be "just" a way to spread hope and faith, or that the news is not really that big, then I will be very disappointed.
And a bit annoyed that things are taken out of proportions.

We should be careful with shouting out "cure, cure!" to other patients when the cure is not even close. Even if the intention is good.
It gives false hope, and that can be destructive for some of us when we realize that the "news" only was a motivational boost.

That said, there must be something bigger underlying these statements. I really believe so. The question for me is what.

 

Wasn't it the whole thing about how the supposedly found something 'different in the blood' and were building the nano testers, etc. Nothing ever seemed to come of that. They hyped it all up too.

 

There was huge hype surrounding the “something in the blood” and nanoneedle. Before that, they hyped the Naviaux metabolic study and the OMF replication of that (still waiting for that to be published 4 years later lol). Then they hyped the metabolic trap hypothesis. Then they said it was a different kind of metabolic trap. I’m guessing the latest cure of the week is the latest marketing drive for fundraising.

 

This looks to be the latest update that I could find on their Severely ill Patient Study, https://www.omf.ngo/2019/11/27/severely-ill-patient-study-study/, from November 2019. This started in 2015, can anybody recall if there have been any publications based on the study?

 

Very true. We have to remember that, however prominent Ron and Janet are in their respective fields, the family still struggles to afford care. Whitney hasn't been able to contribute to pensions and build savings during what should have been some of the most productive earning years of his life, in a country where people have to be very self-reliant financially. And I suspect the family have put much more of their own time and money into the direct and indirect costs of research than any of us realises. I might not be able to read much of the book, but I'll buy it as a way of trying to support them.

It's also worth saying that if Whitney has found a medication or approach that enables him to spend a little more time with his parents and sister in the room, that is a huge development for him – it's not surprising he's been wanting to communicate it in recent months.

 

Trish is right. This is 99% PR for the book. It hasn't got anything to do with research.

Nevertheless it's great work placing it in big media outlets just before book launch. Also: Every good story about ME is a win for us.

 

https://twitter.com/user/status/1346165956024926209

 

https://twitter.com/user/status/1346174301444001793

 

Book excerpt from 'The Puzzle solver'

https://www.the-scientist.com/reading-frames/book-excerpt-from-the-puzzle-solver-68315

 

https://twitter.com/user/status/1346525311387762689



https://twitter.com/user/status/1346526959656988675

https://twitter.com/user/status/1346533323766640640