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An Update on ME/CFS Research with Ronald W. Davis, PhD

Kati

Patient in training
Messages
5,497
That would be a good test: is the POTs lack of blood flow to brain or cfs has the chemical signature same as regular POTs. And can we call it POTs if the mechanism in Cfs is different ?!
A POTS diagnosis is defined as an increase in heart rate of 30 beats per minute when moving from the recline position to upright. This is regardless whether there are other co-morbidities.
 

Seven7

Seven
Messages
3,444
Location
USA
A POTS diagnosis is defined as an increase in heart rate of 30 beats per minute when moving from the recline position to upright. This is regardless whether there are other co-morbidities.
The question is: do we have the protein defect per the study? Or our protein is ok and our issue is just lack of blood flow to brain. This will be important because if we have the protein issue on top of what is going on with cfs, we need to treat both. Or if protein is ok, when we fix CFS POTs Is fixed???

We can have studies that go great and fixes cfs but patient still have POts and we think treatment didn't work.
 

Kati

Patient in training
Messages
5,497
The question is: do we have the protein defect per the study? Or our protein is ok and our issue is just lack of blood flow to brain. This will be important because if we have the protein issue on top of what is going on with cfs, we need to treat both. Or if protein is ok, when we fix CFS POTs Is fixed???

We can have studies that go great and fixes cfs but patient still have POts and we think treatment didn't work.
Hi @lnester7 i am sorry but which study are you talking about that talks about protein defect?
The current research regarding POTS (the autonomic dysfunction) is looking at auto-antibodies. The current treatments are simply supportive care ( beta-blockers, blood volume corrections).
 

Seven7

Seven
Messages
3,444
Location
USA
Hi @lnester7 i am sorry but which study are you talking about that talks about protein defect?
The current research regarding POTS (the autonomic dysfunction) is looking at auto-antibodies. The current treatments are simply supportive care ( beta-blockers, blood volume corrections).
Repeat my post 377 on page 19: My Bold and underline to refer to the protein:

The CCS scientists discovered chemical marks on the NET gene responsible for repressing or turning the gene off. They delved further and found that a repressor protein called MeCP2 together with a non-coding RNA (let-7i) was critical in the gene silencing.
In another exciting development, the researchers, collaborating with the Baker Institute’s Professor Murray Esler, demonstrated that the NET gene could be re-activated by using the FDA approved drug Vorinostat in blood cells derived from POTS study participants.

http://neurosciencenews.com/fainting-disorder-neurology-6293/
 

Janet Dafoe

Board Member
Messages
867
@Janet Dafoe (Rose49)
Is Stanford / OMF still planning to offer a Metabolomics test or has that been put on the back burner for now?
Thanks
I'm not quite sure where that is at at the moment. I know they are working full speed ahead on writing the grant, and that the research has been very engrossing, and they're excited about making progress. They all spend all their time on this so maybe what's happened is that they got diverted by the research or the grant. I'm sorry I'm not really sure, and I am at the moment up so late with Whitney that Ron and I barely see each other.
 
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greeneagledown

Senior Member
Messages
213
I'm not quite sure where that is at at the moment. I know they are working full speed ahead on writing the grant, and that the research has been very engrossing, and they're excited about making progress. They all spend all their time on this so maybe what's happened is that they got diverted by the research or the grant. I'm sorry I'm not really sure, and I am at the moment up so late with Whitney that Ron and I barely see each other.

Well, Ron knows best what should be prioritized, so I say keep doing what you guys are doing in whatever order Ron thinks is best!
 

Janet Dafoe

Board Member
Messages
867
(This is a section of a post Janet made in the Whitney updates thread--it is re-posted here as it discusses Ron's research.)
Hi!
The best thing is that Ron keeps making progress and comes home with new ideas and details about what is happening. They've been mostly working on the NIH grant proposal, which is ridiculously complicated and annoying with its requirements, but the silver lining is that their time spent on putting together the grant is helping their thought process and they are spending unending hours together talking about everything. Raeka Aiyar, PhD, the wonderful communications director for the Genome Center and a great scientist too, came down on the train from San Francisco on Saturday and worked all day with Ron and the team on the grant. These people are just amazing and really dedicated. I keep being in awe of them all.

Rahim, the senior research associate at the Genome Center, has been making those nano sensor chip things so that they can do multiple tests of the cells at a time. Ron says he's almost got it done, after working out the inevitable glitches, so they will be able to ramp up the research like Ron talked about in his video very soon. He's going to make another video about it.

I guess I should have put the research part of this on another, public, thread, but someone else can if they want. Just not all the stuff about Whitney. Or tell me is you think I should and I will. Maybe it's not enough info for that, I don't know.

Anyway, keep on hanging in there. I think about you all every day, both the ones of you that I know and also all of you that I know are out there suffering and missing your lives. Again, I can't wait to meet you. Not to mention traveling all over the world to do it!!!!

Like I tell Ben, every day, eat some ice cream! And try to think of one thing you're grateful for. That helps me a lot to keep my mind and spirit in a better place. It's hard.

Love to you,

Janet
 
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Jill

Senior Member
Messages
209
Location
Auckland, NZ
@Ben Howell , when they tested antidiuretic hormone was that a direct blood test or via sodium measures and volume excreted estimates. We have a dr that will test try most things with al. I just think he's ordered the wrong tests if an actual hormone can be measured because that wasn't on the forms . Any info appreciated .

You ya all , sorry for the divergent tact
 

A.B.

Senior Member
Messages
3,780
The best thing is that Ron keeps making progress and comes home with new ideas and details about what is happening. They've been mostly working on the NIH grant proposal, which is ridiculously complicated and annoying with its requirements, but the silver lining is that their time spent on putting together the grant is helping their thought process and they are spending unending hours together talking about everything. Raeka Aiyar, PhD, the wonderful communications director for the Genome Center and a great scientist too, came down on the train from San Francisco on Saturday and worked all day with Ron and the team on the grant. These people are just amazing and really dedicated. I keep being in awe of them all.

Thanks Janet for keeping us informed.

What projects would the NIH grant cover?
 

greeneagledown

Senior Member
Messages
213
(This is a section of a post Janet made in the Whitney updates thread--it is re-posted here as it discusses Ron's research.)

Rahim, the senior research associate at the Genome Center, has been making those nano sensor chip things so that they can do multiple tests of the cells at a time. Ron says he's almost got it done, after working out the inevitable glitches, so they will be able to ramp up the research like Ron talked about in his video very soon.

Hi, @Janet Dafoe (Rose49). Refresh my memory. Can these nano sensor chip things be used as a treatment assay? Or is the treatment assay a different technology they're using? Thanks!
 
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dreampop

Senior Member
Messages
296
I'm not quite sure where that is at at the moment. I know they are working full speed ahead on writing the grant, and that the research has been very engrossing, and they're excited about making progress. They all spend all their time on this so maybe what's happened is that they got diverted by the research or the grant. I'm sorry I'm not really sure, and I am at the moment up so late with Whitney that Ron and I barely see each other.
I, too, have the vampire sleep schedule. So, your not alone.