Bedside Chats with Ron Davis

[Cort]

Something new from Janet Dafoe

I'm so happy to post the first in our new series "Bedside Chats with Ben". I have long wanted to get more science from lots of different scientists on PR, and help patients have more contact with them.

The idea of this series is for Ben to have informal chats with various ME/CFS scientists and doctors so that patients can feel more connected to the research and get updates more often. It's intended to give you a more informal look into the research, the researchers, and the process.

I will be contacting various scientists and doctors and connecting them with Ben to set up a time for their chat. Lucinda Bateman has already agreed to do the next one!

Ben is bedridden and is pretty sick, so he will do this at a pace that works for him. He needs to be lying down in his bed, so he's set up his large monitor with Skype and some software to record it. We will post the chats on the OMF YouTube page in a playlist that will contain the whole series.

We apologize for the crackly sound on Ron's recording and we will work to figure out what caused it and fix it. I think it's still quite easy to understand in spite of the crackles.

I hope you enjoy this first chat, and the whole series.I hope lots of scientists and doctors agree to chat with Ben. I'm trying to decide who to call after Cindy Bateman.

Please give us feedback. I will attempt to get Ron to answer questions that will be posted on this thread, but there might be too many for us to handle. I promise I will do my best.

Enjoy!

Janet

 

[Not dead yet!]

If I am keeping my "stars of ME/CFS" straight, Ron Davis has a son who communicates only by texting occasionally and was in Unrest, although not responsive. He is the one hunched forward holding his head? Just identifying the person I'm talking about, in case I have them mixed up.

I had an awful crash a couple of times that put me in exactly that same position. The last time, I discovered my liver issue. I would like to know if his son has any lab-visible liver issues like "high but still normal liver values" (like I did). Just so you don't have to go searching thru my previous posts, it helps me a lot to do aggressive liver support, like eating liver, taking choline, and l-cysteine.

My other question is more general, what does he think about nootropics in ME/CFS? I haven't heard a lot about that but I do have a family member who swears by them (not for illness, he is a very busy engineer and if he makes a mistake, it costs hundreds of thousands of dollars). I'm currently taking oxyracetam and the supplement (not really a nootropic), DMAE. They do seem to have a less aggressive but still overall stimulating effect so that I can focus better mentally.

I'd also like to hear a bit about Ron Davis's research and I only know snippets here and there. An overview first please.

Thanks, this is truly very exciting.

 

[Merry]

@Not dead yet!, go to the Open Medicine Foundation website and click on the Research tab.

Also, Open Medicine Foundation has a youtube channel where Ron Davis gives research updates.

Yes, Whitney Dafoe, the son of Janet Dafoe and Ron Davis, is one of the severely-ill patients featured in Unrest. Read a news story about Whitney here. See Whitney's photography here.

I see now that you need a subscription to the Washington Post to read the story.

 

[Not dead yet!]

@Not dead yet!, go to the Open Medicine Foundation website and click on the Research tab.

Also, Open Medicine Foundation has a youtube channel where Ron Davis gives research updates.

Yes, Whitney Dafoe, the son of Janet Dafoe and Ron Davis, is one of the severely-ill patients featured in Unrest. Read a news story about Whitney here. See Whitney's photography here.

I see now that you need a subscription to the Washington Post to read the story.

Wow thank you. I got caught up reading this: http://www.whitneydafoe.com/news/index.html

I've heard that over and over again, went to India, got sick. Although most of the time I've only heard the story if the person got well again later. I don't think it's "an India problem" so much as a travel problem. Reading about explorers in the Renaissance era will turn up several tales of people who didn't get the normal scurvy, they were fine, and then when they arrived, a week later they were down with a months or years long flu. The predisposition --> exposure pattern still holds.

Of all the stories in Unrest, for some reason his hit me so hard. I think it was the body position. And the times I've been to the ER in that position and given a sedative and told to go home. The obvious assumption they made was, I must have gotten drunk yesterday and am now hungover.

All the stories hit me hard. Whether we're old or young, there is no need to have our lives wasted because of a bad attitude in the medical system. I'm feeling better and I was just thinking how far I am from "good" when I watched my husband tie his shoes and run out to the store to get something we needed, before work. For years my mornings have been a sacred period of non interruptible habits so that I can build enough energy for the rest of the day. I won't consider myself cured until I can interrupt my energy building habits and expect that I can run to the store and not crash later.

I've heard of Robert Naviaux before too. I was an avid watcher of the "Anti-Aging" videos. Budget cuts (during the California is bankrupt era) forced them to largely stop making them, or showing them, but many are still available on youtube and vimeo. My interest in Dr. Bruce Ames came from the UCSD video series on mitochondria. Other than being located in the same place at a certain time, I'm not sure what connection Dr. Ames has if any, with Dr. Naviaux.

Since mitochondria are a focus of OMF's work, and I don't personally know of a more amusing and also in depth introduction to what normal aging does to mitochondria, I'll contribute this video from 2006. I don't remember this one on the UCSD website, but many of his videos are covering different parts of the same ground:

 

[Not dead yet!]

I do have a specific question about the research... the website says:

Can I participate in your research?​

We wish you could, but that’s not possible at this time. For all our current studies, research participants have already been chosen from well-defined groups with the help of expert ME/CFS clinicians. However, in the future, we may need to recruit more patients or collect more patient data. Please stay informed of this possibility by signing up for our newsletter.​

It seems like being part of a well defined group is extremely important in order to get appropriate help. Who would be considered an expert ME/CFS clinician? Obviously they trust the judgement of some clinicians and work with them more often. Knowing who they are can help me decide whether they are too far away from me, or whether I can successfully travel there and receive good treatment. I'd rather not guess at who would be considered expert clinician by the OMF. Can they be more specific about it?

 

[Merry]

I do have a specific question about the research... the website says:

Can I participate in your research?​

We wish you could, but that’s not possible at this time. For all our current studies, research participants have already been chosen from well-defined groups with the help of expert ME/CFS clinicians. However, in the future, we may need to recruit more patients or collect more patient data. Please stay informed of this possibility by signing up for our newsletter.​

It seems like being part of a well defined group is extremely important in order to get appropriate help. Who would be considered an expert ME/CFS clinician? Obviously they trust the judgement of some clinicians and work with them more often. Knowing who they are can help me decide whether they are too far away from me, or whether I can successfully travel there and receive good treatment. I'd rather not guess at who would be considered expert clinician by the OMF. Can they be more specific about it?

Good morning, @Not dead yet!. I am not sure how research subjects were chosen for any of the studies, but a possible source for subjects could be from the Open Medicine Institute clinic.

 

[Not dead yet!]

Good morning, @Not dead yet!. I am not sure how research subjects were chosen for any of the studies, but a possible source for subjects could be from the Open Medicine Institute clinic.

That looks like an EMR mostly, with additional features to help people find studies. Since my doctor uses another EMR service, I don't know if my asking him to change or to use this as an adjunct is appropriate. I'll wait and see if my question is answered, as in, which doctors specifically are the clinical experts they were referring to. Thanks though