OMF-Dr Davis research update (video!)

Ben H

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OMF Scientific Advisory Board Director Ronald W. Davis, PhD, Presents
An Update on ME/CFS Research

Dear all,

We are pleased to share another research update by OMF's Scientific Advisory Board director, Ronald W. Davis, PhD, produced by Ashley Haugen at the Stanford Genome Technology Center (SGTC).

Dr. Davis reviews recent progress made at the SGTC and the plans to ramp up research. Watch the video here.

Stay tuned for additional exciting announcements coming this week.
Please donate to continue this critical research.

With hope for all,


Linda Tannenbaum
CEO/President

P.S. For OMF friends living in the EU, UK, Australia or Canada, if you want to continue receiving OMF's news in your inbox and you have not yet re-registered, please sign-up today before we must remove you from our mailing lists.


Thanks all,


B
 

TreePerson

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Hi @Ben H
Do you know whether the nano needle will be tested on people with depression in order to exclude the possibility that they give the same reading? It seems very important to me that it is, if it’s to be a marker of illness rather than a marker exclusive to ME/CFS.
 
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alkt

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I do not want to come across as negative but he seems to need a break perhaps he just doesn't like public speaking hopefully that is the case. being selfish I want him to be healthy and at his best for a long time to come.
 

Ben H

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Hi @Ben H
Do you know whether the nano needle will be tested on people with depression in order to exclude the possibility that they give the same reading? It seems very important to me that it is if it’s to be a marker of illness rather than a marker exclusive to ME/CFS.
Yes I agree, I believe it will be cross referenced against a number of diseases. @Janet Dafoe (Rose49) may be able to clarify.

Thanks for the update Ben,

Do you know if the nanoneedle predicts severity?

Hi @Spindrome

I believe there has been some talk that it may have so far, though I am not sure currently. May be wrong. If @Janet Dafoe (Rose49) sees this, she may be able to clarify.
 

Ben H

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I do not want to come across as negative but he seems to need a break perhaps he just doesn't like public speaking hopefully that is the case. being selfish I want him to be healthy and at his best for a long time to come.
Hi @alkt

I’m not sure what you mean/are inferring.


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alkt

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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 .
 

ljimbo423

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Just a couple quotes from the video-

At 4:20 Ron says- "If we can find a trap (metabolic trap) that's really causing this disease it will be easy to reverse. That would be a cure, not just a treatment".:thumbsup:

5:25- "We have 4 biomarkers". "Those all look pretty good as a biomarker for ME/CFS". "So far, in the nano-needle every patient shows a clear signal and none of the healthy controls do".

Jim
 

Ben H

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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 .
Ron’s work ethic (not sure that is even the right term for what I mean) is astonishing, I have seen it first hand. Even when not at the lab. He also cares for Whitney in shifts with Janet when he is not working. It would make anyone tired, though I am not sure if he is here as I can’t speak for him. He works so, so hard. ‘Lifestyle’ is probably a better term. Same for Janet.


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used_to_race

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At 4:20 Ron says- "If we can find a trap (metabolic trap) that's really causing this disease it will be easy to reverse. That would be a cure, not just a treatment".:thumbsup:
You know, beyond the binary outcome of "cure" or "no cure", I think this hypothesis is worth exploring. Even if it turns out that there is some driving mechanism that is upstream from any metabolic trap(s), perhaps treating the trap(s) could have a hugely beneficial impact on patient quality of life. I know lots of people on here have gotten some (perhaps transient) benefit from nutritional IVs and metabolic supplements, so if we can improve the efficacy of strategies like this by treating in a systematic, research-based way, it could be a big development... even if it's not a cure. I would also imagine that having research to back up these phenomena would go a long way towards ensuring that insurance will cover any treatments related to metabolic traps, which improves the cost, access, and even safety of such procedures.
 
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We the poor have to think outside of the box. What we have extra is very well trained people that can help.
So maybe we can increase the number of plp by using volunteers ( I would be willing) and like hey right this paper, contact patients.... get the volunteers run the leg work and let the little researcher you have focus on the important things
 

Gemini

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I must have missed something at some point recently. What are the 4 potential biomarkers that he is referring to?
@Gamboa, I've heard Ron mention 4 but I don't think he's talked in detail about all of them.

In a recent Science Wednesday update @Ben H posted, the nanoneedle and another device called a "Magnetic Levitation" device that measures density of white blood cells are described. Findings indicate ME/CFS patient's WBC's are less dense than controls. I thought these may be 2 of the 4, perhaps Ben can comment on them?

Here's the link:

http://forums.phoenixrising.me/inde...nded-diagnostic-technology-development.59275/
 
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Thanks for this Ben.

I must have missed something at some point recently. What are the 4 potential biomarkers that he is referring to?

Thanks
Claire
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.
 

Diwi9

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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.
 
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Thanks for this Ben.

I must have missed something at some point recently. What are the 4 potential biomarkers that he is referring to?

Thanks
Claire
1. Nanoneedle
2. Magnetic Levitation Device
3. Deformability of Red Blood Cells
4. Mitochondrial Function Test using Seahorse instrument
Also, metabolomics, as in Naviaux's study, but this is very expensive at the moment.

Stay tuned. More is coming out about 2018 research very soon. We worked on it for hours today and this evening.
 
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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.
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! :)