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Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

Rose49 said:
...a low "arrogance to intellect" ratio, as Ron puts it.

Isn´t saying you have a low arrogance to intellect ratio a rather arrogant statement?
Lol, that's all you've taken from this thread??

The full quote is..
Linda leading the fundraising and Ron being the Director of the OMF Scientific Advisory Board, in charge of all the research. This allowed him to realize his mission of putting together an amazing team of Nobel Laureates and National Academy of Sciences members, all with long and deep track records of success in science and publishing, creative, out of the box thinking, and a low "arrogance to intellect" ratio, as Ron puts it.
and I'm sure we all know or know of people who are high in both intellect and arrogance. So what is being said is that Ron is seeking to avoid those kinds of people in his team, seems quite sensible to me.
 

msf

Senior Member
Messages
3,650
Nah, I just decided to have some fun. If I wanted to be serious I would have asked if anyone knows whether Davis may have only studied this particular biomarker in the severely afflicted.
 
Messages
7
Has anyone anything to say about this study by Behan, from 1991?

'We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection.'

http://www.ncbi.nlm.nih.gov/pubmed/1792865
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Has anyone anything to say about this study by Behan, from 1991?

'We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection.'

http://www.ncbi.nlm.nih.gov/pubmed/1792865

Nice find. Maybe Ron would like a peek at it if he hasn`t already @Rose49 :)
 

thegodofpleasure

Player in a Greek Tragedy
Messages
207
Location
Matlock, Derbyshire, Uk
Actually I'm a little confused when you say you're working at around 25% - are you referring here to the 27.4% blocking of active sites? Mine was 47% blocked. I don't really see where it says at what percentage we are working, do you know what I mean?

Look at the handwritten score right at the bottom of the page i.e. 25/100 - that's the overall mitochondrial function score.
 
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87
I also enclose another test I had done at a later date -
this maybe of interest to someone?
 

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Janet Dafoe

Board Member
Messages
867
@Rose49 - It might be a good idea to put something like this on #MEAction. Would you be willing to make some tweaks and submit it?

Let me know if you can't, I'll put someone on it. :)

-J
Yes, of course. What kind of "tweaks" do you want? I've been busy all day and now is my Whitney time, so it won't be till later tonight if I still have the energy, or tomorrow. Same for Sasha's request. Sorry for delay.
 

perrier

Senior Member
Messages
1,254
Thank you so much for keeping up with us on this forum, Janet. We are so grateful to Ron for his efforts, and hope that Whitney will regain his health soon. Another donation has been made by us tonight.
Yes, Janet, thank you and your husband. I'm staying at the edge of my seat non stop now that your husband is involved. My daughter is very sick. We are Canadians. She's struggling to hang on. God be with you.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Yes, of course. What kind of "tweaks" do you want? I've been busy all day and now is my Whitney time, so it won't be till later tonight if I still have the energy, or tomorrow. Same for Sasha's request. Sorry for delay.

Just wanted to stop by and say thank you for taking your precious time to let us know what's going on. I have a young son who is severely ill but not as bad as your boy is. Can empathise so much with your daily routine. It's all consuming. Much love and strength to all of you xxx
 

perrier

Senior Member
Messages
1,254
@markiz2001


I don't think that Ron Davis is necessarily suggesting that there is anything wrong with the mitochondria themselves, he said that there was a shutdown of the system.

The MacLaren/Myhill test has not been independently validated but the ME Association have provided funding for a study which I think compared the Myhill test with an oxidative phosphorylation assay. AFAIK the study has been completed but not yet published.
Forgive the naive question. What role do the infections have then? Is it that we've all been chasing the wrong thing?
 

perrier

Senior Member
Messages
1,254
It makes sense to me that the mitochondria could be affected, from how I experience my own symptoms - reading a few years ago on mito disorders I thought it sounded a lot like my illness and of course Dr Myhill has been convinced of this for years. However I cant see how this ties in with immune issues (I certainly have those) for example reactivated viruses, high bacterial loads, autoimmune anitbodies, high levels of pro inflammatory cytokines etc, nd how it fits with the work of Fluge and Mella and B cells - anyone? (this is not my strong point so bear with me)
You worded the question very well?
 

perrier

Senior Member
Messages
1,254
Hey Justy,

Have a read, when you get a chance, have a read of the following:

http://www.sciencedirect.com/science/article/pii/S1567724913002390


This is by Ron Davis's lead mitochondrial researcher Robert Naviaux, and is absolutely fascinating. This CDR response can potentially answer many of your, and our questions.

The immune system cells have mitochondria, so if they are not functioning correctly, at capacity etc, then the immune system will also not function as intended, and perhaps will not be able to fight off common viruses, or reactivated viruses. Bacteria and viral load may be the precipitating factor for CDR getting stuck, which causes a 'go slow' in the mitochondria so to speak.

The article explains the potential very well. I didn't even know mitochondria had this function until I read this, but now that I have, it makes a huge amount of sense.


B
Huge thanks Ben!
 

Justin30

Senior Member
Messages
1,065
The main symptom of a Mitochondrial Disease is = Encepholmyleitis and Dyautonomia....hey sounds like ME

There are subsets and many misdiagnoses in my eyes. Dr have had meds return their patients to near normal.

The lack of a thorough workup is a fault of Dr, the Health Systems and the discovery of new disease all the time. Further the Stigma given to this disease was aweful by naming CFS.

But the ABSOLUTE # 1 Problem is is the LACK OF FUNDING......this inhibits the discovery of disease within ME/CFS/Subsets/Stages etc.

Viruses = Weakens Immune response shuts down Mitochondria...like when you have the flu

Bacteria = Weakens Immune response shuts down Mitochondria. Toxifies blood and organs through sepsis. Ever have strep throat or stomach bug..

Autoantibodies/ Autoimmune Antibodies = A Dr didnt want to listen to symptoms or could not or did not have the time to sort out the issue or lacked knowledge. Heres a list of symptoms of autoantibodies...look familiar? and I am sure their is more =
Difficulty walking, Difficulty maintaining balance,Loss of muscle coordination, Loss of muscle tone or weakness, Loss of fine motor skills, such as picking up objects, Difficulty swallowing, Slurred speech, Memory loss and other thinking (cognitive) impairment, Vision problems, Sleep disturbances, Seizures, Sensory disturbances, Unusual involuntary movements (Myclonus), Difficulting Breathing

To add to this B-Cells from what I understand can harbour bacteria and viruses.

Its time to get rid of piss poor CFS Definitions and start cleaning up the definitions through discovery and real science.

The one thing all true ME patients have is the inability to maintain and sustain proper levels of energy production = Mitochondria are the energy plants of our bodies

To add to this viruses, bacterias, toxins, all result or inhibit processes that all major vital organs require to maintain homeostasis...

Then their is a group that has a true Encephalopathy.....which results in dysfunction everywhere....

BUILD THE CENTER AND WE WILL COME!
 
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Justin30

Senior Member
Messages
1,065
The one thing I dont get is what drugs are used to treat Mitochondrial Diseases?

I know all the supplements so.....

If I get Myers cocktails I feel more normal....but week from deconditioning
....this somehow points me in the direction of malabsorption..toxins...bacteria cause of IBS...
 

Janet Dafoe

Board Member
Messages
867
Also: OMF is run in Southern California by Linda Tannenbaum, who is CEO. OMI, where Andy Kogelnik's clinic is, is in Mountain View, CA. Ron Davis is a professor of genetics and biochemistry at Stanford and Director of the Stanford Genome Technology Center, and lives in Palo Alto and works at Stanford. Linda flew up from S Cal to attend the event on Wednesday. She is AWESOME. She is going to the London conference with Ron. They are a great team. And I help behind the scenes with ideas and strategies and writing, and whatever else I can do. Twitter. LOL. And Ashley, our daughter, Whitney's sister, does lots of advocacy and helps in lots of ways too. She manages the CFSResearch Center fb page and does what she can for fundraising too.
I have now combined my two posts explaining OMF and OMI and divided them into smaller paragraphs and editied them a bit. I did it by editing my first post, so you can go back and check it out. I hope they are more useful and easier to read now.