OMF-Dr Davis research update (video!)

[Janet Dafoe]

I mean he comes across as being very tired . I could of course be wrong but that is the way his speaking sounds to me .

I thought he sounded really tired too. I think they recorded this in the afternoon, which is when he needs to take a little nap! But yes, he is tired, and we are trying to make sure he gets enough sleep and exercise. He loves to go for walks with the researchers so they can have a good conversation without interruptions and exercise at the same time. There's a nice trail by the genome center.

 

[Janet Dafoe]

Thanks for the update Ben,

Do you know if the nanoneedle predicts severity?

They are working on making it quantitative, but they aren't there yet. They don't know yet if that will work or not.

 

[Diwi9]

Thank you so much! I wish I'd known so I could have had you visit and we could meet. I've had several patients who were donating blood come over and spend some time with me so I can meet them, and I've really enjoyed it. If you're coming, please contact me if you would like to meet!

Absolutely, @Janet Dafoe (Rose49)! I should be back in August.

 

[mariovitali]

I don't think so. I'll try to get back to you, but it might not be really soon as I'm having surgery on Thursday. :

Thank you @Janet Dafoe (Rose49).

Since i am not a Native English speaker i really do not know what is usually said to someone before surgery...but you have my Best wishes for your upcoming Surgery and a quick recovery.

 

[Dakota15]

@Janet Dafoe (Rose49) Thanks so much for the update!

I was just in the Bay Area (Mountain View) at the Center for Complex Diseases - I actually tried emailing Dr. Davis (his email from the Stanford website) to volunteer if any studies/collection was needed but understandably so I never got a response back. In hindsight I should have used this forum!

I'll most likely be back in the next 4-5 months, I'd love to help in any way that I can

 

[Ben H]

Also guys, some rather mega news...

https://forums.phoenixrising.me/ind...orative-center-and-expands-data-center.59961/

 

[AshleyHalcyoneH]

I mean he comes across as being very tired . I could of course be wrong but that is the way his speaking sounds to me .

He was definitely tired (I record the videos). I often have to pressure the videos out of him as he is SO busy that getting him to sit down and do them can be a struggle, he is always running around! So sometimes you catch him on a tired afternoon, but he loves to update you guys, it's just a little peek into how hard he works!

 

[used_to_race]

I was in Ron Davis' lab on Monday and Tuesday to participate in two studies. My sister accompanied me and the research assistants were excited to be able to include a healthy family member in both studies. If you are traveling to see a specialist in the Bay Area, please consider finding out if there are studies you can participate in while in the area. The research assistants are in need of participants to complete the current studies. Dr. Montoya also has about three studies that are recruiting participants at this time.

I will be at the Center for Complex Diseases on June 7th for an appointment. How do I find out about studies I could participate in?

 

[Diwi9]

I will be at the Center for Complex Diseases on June 7th for an appointment. How do I find out about studies I could participate in?

You can email: fjahania@stanford.edu (needs blood samples) and laurel@stanford.edu (needs hair samples).

The Center for Complex Diseases is working with Ron's lab, so they can probably provide you information too.

For studies through Stanford's ME/CFS Clinic (Montoya), contact Tullia Lieb, their clinical research coordinator: tlieb@stanford.edu. Some of their current studies require an MRI.

 

[used_to_race]

You can email: fjahania@stanford.edu (needs blood samples) and laurel@stanford.edu (needs hair samples).

Cool, I emailed them. However, I'd imagine they need some "proof" that I am a patient eligible for any studies. Maybe Dr. Chheda's office can provide this.

 

[RWP (Rest without Peace)]

I was trying to think of these. If I had to guess what they are based on everything I've heard:

1. electrical impedance measurements of mecfs cells exposed to salt stress. [edit: aka the nanoneedle experiment]
2. a stratification thing where mecfs cells are lighter (?) [edit, the thing @Gemini is mentioning in the post above]
3. red blood cell shape differences
4. naviaux's metabolic panel (expensive though)

Open to disagreements / other suggestions here.

You were sure close . . . 3 out of 4 ain't bad (and the 4th was Janet's #5!

RWP

 

[Diwi9]

Cool, I emailed them. However, I'd imagine they need some "proof" that I am a patient eligible for any studies. Maybe Dr. Chheda's office can provide this.

I had the same concern, so I mentioned to them that I was a patient of Dr. Chheda and also informed Dr. Chheda that I was participating. Her office is involved and knowledgeable about the research with Ron Davis. They should be doing basic screening (inclusion criteria has been a concern in so many past studies) and depending on how far along you are with CCD, you should have some diagnoses listed in your chart that can assist. It's great that you are willing to participate!

 

[Janet Dafoe]

I will be at the Center for Complex Diseases on June 7th for an appointment. How do I find out about studies I could participate in?

Julie Wilhelmy organizes the patient blood draws. Email her at wilhelmy@stanford.edu
thank you so much!

 

[Janet Dafoe]

Cool, I emailed them. However, I'd imagine they need some "proof" that I am a patient eligible for any studies. Maybe Dr. Chheda's office can provide this.

The best is to email Julie Wilhelmy. She keeps track of everything and works with Fereshteh and Laurel. Her email is wilhelmy@stanford.edu

 

[perrier]

He was definitely tired (I record the videos). I often have to pressure the videos out of him as he is SO busy that getting him to sit down and do them can be a struggle, he is always running around! So sometimes you catch him on a tired afternoon, but he loves to update you guys, it's just a little peak into how hard he works!

And you Ashley, offer incalculable help; I got a glimpse of it in Montreal at the conference; you are an amazing asset and help to your Dad.

 

[Gemini]

I'm having surgery on Thursday. :

We thought we heard you mention a health issue at the recent #MEAction demonstration. Our patient group on the East Coast will be thinking about you Thursday as you undergo surgery. We also send our well-wishes across the miles.

 

[Gingergrrl]

Since i am not a Native English speaker i really do not know what is usually said to someone before surgery...but you have my Best wishes for your upcoming Surgery and a quick recovery.

What you said was perfect and I second that and wish you the best @Janet Dafoe (Rose49) for your upcoming surgery and recovery.

I will be at the Center for Complex Diseases on June 7th for an appointment. How do I find out about studies I could participate in?

I am sorry I am so slow with PM's @used_to_race but promise to reply long before your appt on June 7th!

 

[Sushi]

I'm having surgery on Thursday. :

Our patient group on the East Coast will be thinking about you Thursday as you undergo surgery. We also send our well-wishes across the miles.

 

[AdamS]

These video updates are fantastic and always give me a lot of hope, please keep doing them!

 

[Aroa]

I was trying to think of these. If I had to guess what they are based on everything I've heard:

4. naviaux's metabolic panel (expensive though)

Although Naviaux´s panel may be expensive , it is much more expensive to pay lot of money to private doctors for medical reports, lawyers and finally being fired because you have no way to prove you are really sick