Dr. Ron Davis presents findings at Invest in ME 2016 conference

[Merry]

Simon McGrath wrote a good article for ME Action about Ron Davis's presentation at the Invest in ME 2016. Exciting! Thanks, Simon.

Professor Ron Davis presented new findings from his Big Data study at Friday’s Invest in ME 2016 conference. Davis’s preliminary data show serious problems with the biochemical processes needed to convert sugars and fats from food into energy the body can use. If these findings are replicated, this could prove a major step forward in understanding ME/CFS.

http://www.meaction.net/2016/06/04/ron-davis-errors-metabolism/

 

[Anomie]

Thanks for posting this article Merry. I was so excited for this lecture and it sounds like it didn't dissapoint. Does anyone know if a transcript will be available at any point?

 

[Merry]

Thanks for posting this article Merry. I was so excited for this lecture and it sounds like it didn't dissapoint. Does anyone know if a transcript will be available at any point?

I don't know about a transcript, but I saw that a dvd of the conference will be available. If I find out more, I will post.

 

[Ron]

http://www.investinme.org/Documents/Journals/Journal of IiME Vol 10 Issue 1.pdf
Page 77
Dr. Ron Davis

ABSTRACT:
Big Data Approach: Severely ill ME Patient Cohort
Our first major effort with multiple patients was to collect a large number of
molecular observations on patients with ME/CFS. Once published these data could
serve as the basis for a large number of hypotheses that NIH and other government
agencies might fund. The cost of this type of study will be very expensive per
patient. In order to reduce the overall cost it was recommended by the OMF
Scientific Advisory committee to study severely ill patients because they should
show the largest molecular signature. With a larger signal fewer patients can be
used and still achieve statistical significance. This study has been called the Big
Data Study of Severely Ill CFS Patients. These patients are bed bound so do not
visit clinics and have not been studied. We send a medical team to each home in
the San Francisco Bay Area to collect blood, urine, saliva, tears, and stool. We will
be collecting more molecular data on each patient at one time point than has ever
been collected in any study in history.
While we were seeking funding for the Big Data Study we tested some of the
technologies on a few severe and not severe CFS and healthy control patients. We
discovered that the metabolome (the small metabolites found in the blood and
urine) of the serium gave clear indication of metabolic abnormalities. Preliminary
results indicated that glycolysis may be impaired with glucose being routed to fatty
acid synthesis. Possibly more important, the metabolites in the citric acid cycle in
the mitochondria were lower than in healthy controls and some almost
undetectable. This cycle generates most of the energy (ATP) for the body. It makes
it clear that this is no psychosomatic disease. From preliminary analysis it would
appear that not only ATP is low but also ADP, AMP, GTP and in some cases
uracile. These cofactors are involved in hundreds of molecular reactions in the body
including in the brain. Their decrease would cause a large number of body
functions to be abnormal. We don’t know which cells in the body are being affected
(possible all cells) and are currently studying the various white and red cells with a​

variety of commercial and custom technologies.

 

[Merry]

Thank you very much, @Ron.

 

[Laurie P]

http://www.investinme.eu/IIMEC11-DVD-Order-EB.shtml

"The DVD will likely contain 4 discs and will be in PAL format- containing the full presentations from the 2016 conference plus plenary sessions and pre-conference dinner talks."

Sorry the image is so big. I made the image smaller but it enlarges when I post it.

 

[Cort]

http://www.investinme.org/Documents/Journals/Journal of IiME Vol 10 Issue 1.pdf
Page 77
Dr. Ron Davis

ABSTRACT:
Big Data Approach: Severely ill ME Patient Cohort
Our first major effort with multiple patients was to collect a large number of
molecular observations on patients with ME/CFS. Once published these data could
serve as the basis for a large number of hypotheses that NIH and other government
agencies might fund. The cost of this type of study will be very expensive per
patient. In order to reduce the overall cost it was recommended by the OMF
Scientific Advisory committee to study severely ill patients because they should
show the largest molecular signature. With a larger signal fewer patients can be
used and still achieve statistical significance. This study has been called the Big
Data Study of Severely Ill CFS Patients. These patients are bed bound so do not
visit clinics and have not been studied. We send a medical team to each home in
the San Francisco Bay Area to collect blood, urine, saliva, tears, and stool. We will
be collecting more molecular data on each patient at one time point than has ever
been collected in any study in history.
While we were seeking funding for the Big Data Study we tested some of the
technologies on a few severe and not severe CFS and healthy control patients. We
discovered that the metabolome (the small metabolites found in the blood and
urine) of the serium gave clear indication of metabolic abnormalities. Preliminary
results indicated that glycolysis may be impaired with glucose being routed to fatty
acid synthesis. Possibly more important, the metabolites in the citric acid cycle in
the mitochondria were lower than in healthy controls and some almost
undetectable. This cycle generates most of the energy (ATP) for the body. It makes
it clear that this is no psychosomatic disease. From preliminary analysis it would
appear that not only ATP is low but also ADP, AMP, GTP and in some cases
uracile. These cofactors are involved in hundreds of molecular reactions in the body
including in the brain. Their decrease would cause a large number of body
functions to be abnormal. We don’t know which cells in the body are being affected
(possible all cells) and are currently studying the various white and red cells with a​

variety of commercial and custom technologies.

Cool! Thanks for the abstract

 

[Cort]

Here are the tweets I found:

Ron Davis: It's hard to give Whitney substances he needs any more, because he's fed through PICC line, everything must be sterile.
Ron Davis discusses the huge differences between humans and mice. E.g. trauma can have opposite effects on expression. #IIMEC11
Ron Davis: Deficient biotin metabolism was a biomarker. Solution: biotin. #IIMEC11 (Olli Polo has recommended biotin for some patients.)
Ron Davis: When you can't burn sugar or fat, you burn amino acids (muscle) Whitney felt better eating spoonfuls of AA powders. #IIMEC11

Ron Davis: When we're talking about the data, it's not 20% difference between CFS/ME and controls. Whitney had 16 SD difference. #IIMEC11
3 retweets 6 likes
Ron Davis: N = 3 is not a big study, but this is personalized medicine. You can learn from one patient.
7Ron Davis: Proteomic studies are very expensive, but cheaper to study severely ill, as more abnormality - less subjects needed
Ron Davis: I went through 9,000 papers mentioning #mecfs, but got very little data out of them

#IIMEC11 With complex systems mouse studies may not work as results can be opposite. FDA requires mouse studies first

#IIMEC11 Results from a different patient - tryptophan metabolism - used to make melatonin, serotonin - patient had an infection
6 retweets 13 likes


#IIMEC11 Ron will be getting even more people involved.
8 retweets 20 likes

#IIMEC11 With trauma, mitochondria shut down -- question -- why do they not start up again with ME patients? A key.

#IIMEC11 Ron Davies very excited about the technology.

#IIMEC11 Whitney -- found to be biotin deficient - very rare. Enzymes in the Citric Acid Cycle are dependent on biotin. Easy to fix

#IIMEC11 Glycocolysis does not look like it's working very well in the patients.
11 retweets 14 likes

#IIMEC11 Citric Acid Cycle being discussed -- the energy cycle. Patients show a lot of deficiency in the TCA cycle
Phoenix Rising ‏@aboutmecfs Jun 3
#IIMEC11 Ron Davies has a graphic with many deficits and surpluses in patients - 5 standard deviations below the norm
#IIMEC11 Sorting data out in terms of 'big deficit' and 'big suplus' re: what metabolite and what enzymes are involved

#IIMEC11 Now need to dig deep and interpret the data, zero in on what's important.
7
#IIMEC11 Biggest problem is the massive amount of data

#IIMEC11 Assessing serum right now

#IIMEC11 Metabolon - 3 patients vs 43 healthy controls. Higher # of controls -- want to know what is healthy

#IIMEC11 Trying to move towards personalized medicine
7 retweets 10 likes

#IIMEC11 Metabolomics of CFS - services donated by Metabolon -- Whitney first patient assessed with their technology.
Jun 3
#IIMEC11 They have developed new technology -- didn't say what -- discussed yesterday

#IIMEC11 plus immunology

#IIMEC11 Doing sequencing and metabolomics

#IIMEC11 Have sampled 20 severely affected patients and 10 controls
#IIMEC11 Looking at severely ill patients as they have larger molecular signatures

#IIMEC11 Two purposes of project -- collect a lot of data, and try to find biomarkers.
#IIMEC11 Problem with past research - trial and error research. Ron Davis realized we needed a lot of data, raised private funds to do study

#IIMEC11 Up next -- Professor Ron Davis -- Big Data Approach: Severely ill ME patient Cohort

 

[Tina]

Two questions: 1) Are biotin and AA powders something that we can obtain at a regular health food store and 2) Does anyone know which AA powders?

 

[Merry]

Two questions: 1) Are biotin and AA powders something that we can obtain at a regular health food store and 2) Does anyone know which AA powders?

The doctor who diagnosed me with CFIDS in 1990 prescribed an amino acid powder based on lab results. I got the powder from him; I don't know where he had it made. I'm sorry to say that I didn't see any benefit from the powder, and I found it very difficult to ingest (one time trying to swallow it I breathed it in). The biotin I think you should be able to obtain from a health food store or online supplement company.

 

[Veet]

Yes, they're available. I get them from iherb. I've used many aminos over time, w/ good results. After extensive detox and correcting minerals, methylation, I generally only use carnitine these days.

 

[GailW]

I got excited to read about Biotin deficiency, thinking it could be a fix for some of us (and hopefully it will be), but then I read it can come about if someone is being fed intravenously, like Whitney. Are there thoughts that Whitney's B7 deficiency is due to being fed intravenously or did the deficiency come prior to that?

 

[Yavapai]

http://www.investinme.org/Documents/Journals/Journal of IiME Vol 10 Issue 1.pdf
Page 77
Dr. Ron Davis

ABSTRACT:
Big Data Approach: Severely ill ME Patient Cohort
Our first major effort with multiple patients was to collect a large number of
molecular observations on patients with ME/CFS. Once published these data could
serve as the basis for a large number of hypotheses that NIH and other government
agencies might fund. The cost of this type of study will be very expensive per
patient. In order to reduce the overall cost it was recommended by the OMF
Scientific Advisory committee to study severely ill patients because they should
show the largest molecular signature. With a larger signal fewer patients can be
used and still achieve statistical significance. This study has been called the Big
Data Study of Severely Ill CFS Patients. These patients are bed bound so do not
visit clinics and have not been studied. We send a medical team to each home in
the San Francisco Bay Area to collect blood, urine, saliva, tears, and stool. We will
be collecting more molecular data on each patient at one time point than has ever
been collected in any study in history.
While we were seeking funding for the Big Data Study we tested some of the
technologies on a few severe and not severe CFS and healthy control patients. We
discovered that the metabolome (the small metabolites found in the blood and
urine) of the serium gave clear indication of metabolic abnormalities. Preliminary
results indicated that glycolysis may be impaired with glucose being routed to fatty
acid synthesis. Possibly more important, the metabolites in the citric acid cycle in
the mitochondria were lower than in healthy controls and some almost
undetectable. This cycle generates most of the energy (ATP) for the body. It makes
it clear that this is no psychosomatic disease. From preliminary analysis it would
appear that not only ATP is low but also ADP, AMP, GTP and in some cases
uracile. These cofactors are involved in hundreds of molecular reactions in the body
including in the brain. Their decrease would cause a large number of body
functions to be abnormal. We don’t know which cells in the body are being affected
(possible all cells) and are currently studying the various white and red cells with a​

variety of commercial and custom technologies.

@Cort Your G6PC2 gene might have something to do with the glycolisis issues they are finding in CFS.