Presentation at EUROMENE - London, UK

[mariovitali]

Oh sorry, I was mixing things up

No problem Inara

 

[mariovitali]

Here is my latest blog regarding my presentation at EUROMENE. Includes some photos that i couldn't upload here :



http://algogenomics.blogspot.com/2018/09/presentation-at-euromene-london-uk.html


Of interest could be also the mention about "Personal Data Mining" that i started using in 2011 to better understand my Symptoms. For a total of 434 days i was keeping a detailed log using my mobile device with the goal to analyse this data and extract useful patterns (the common characteristics of days where the Symptoms were very pronounced) :

 

[Perrier]

I am quite familiar with Vitamin K2, it does nothing for this disease in my experience. That said i have not run any clinical trials with lots of patients but its easily available in most countries and non prescription. Frankly it should be in the drinking water instead of fluoride for its bone density, cavity prevention and heart disease protective properties but thats not ME/CFS.


I am curious about this work if you can give us any details.


I've seen some of her work and she is going to become a giant in ME/CFS/autoimmunity research.

In Montreal, Dr Carmen S said it would be 5 years before they had anything. This is too long for many people in the very severe category. I hope this gifted physician is wrong on that one!

 

[Alvin]

In Montreal, Dr Carmen S said it would be 5 years before they had anything. This is too long for many people in the very severe category. I hope this gifted physician is wrong on that one!

I hope we get faster results as well but real research often takes time and we are decades behind where we should be.
Unfortunately we can't say ok we are behind so we will only do quick research because we have no idea if the quick stuff will lead to a treatment or not. It may take long term research to get to a treatment/cure. So we need to hedge all our bets

I do hope we don't need 5 years to get a treatment. If i were religious i would pray that we get something very, very, very soon

 

[mariovitali]

I hope we get faster results as well but real research often takes time and we are decades behind where we should be.
We can't say ok we are behind so we will only do quick research because we have no idea if the quick stuff will lead to a treatment or not. It may take long term research to get to a treatment/cure. So we need to hedge all our bets

@Alvin @Perrier

I believe that if we find what is the cause of ME/CFS, things will be easier after that.

We found some common ground with Carmen. She was very keen to hear every detail and she was really putting her mind into it, as if she was trying to solve the puzzle, even at night during dinner time.


She is looking into many interesting things. Again, since it is not right to disclose the details i won't ....but what i am trying to say here is that they are definitely working on it.

 

[Alvin]

@Alvin @Perrier

I believe that if we find what is the cause of ME/CFS, things will be easier after that.

We found some common ground with Carmen. She was very keen to hear every detail and she was really putting her mind into it, as if she was trying to solve the puzzle, even at night during dinner time.


She is looking into many interesting things. Again, since it is not right to disclose the details i won't ....but what i am trying to say here is that they are definitely working on it.

I don't know if what you mean by common ground is between your theory and her research but from what i know of her she is a huge asset to ME/CFS

 

[mariovitali]

I don't know if what you mean by common ground is between your theory and her research but from what i know of her she is a huge asset to ME/CFS

The common ground i was referring to is some genes that the machine learning approach has found (and she is also already looking at them) plus one biological function.

 

[mariovitali]

I would like to share some news about my talk with Dr Charles Shepherd regarding the Hypothesis that looks at Liver function.

cc : @Andy

Dr Shepherd has replied that after talking to trustees of ME Association, this Research may be eligible for funding but i will have to team up with a Liver UK Specialist or Specialist Unit. I tried looking for relevant info in the UK and came across the following list :



UCL Institute for Liver and Digestive Health


https://www.ucl.ac.uk/liver-and-digestive-health/contact-us



British Liver Trust :


https://www.britishlivertrust.org.uk/about-us/contact-us/



Foundation for Liver Research


http://www.liver-research.org.uk/contact/contact.html



British Association for the Study of the Liver

https://www.basl.org.uk/



Birmingham University Research

https://www.birmingham.ac.uk/research/activity/mds/centres/liver/research/index.aspx



Southampton University

http://www.uhs.nhs.uk/OurServices/Hepatology/MeettheHepatologyteam.aspx




University of Plymouth


https://www.plymouth.ac.uk/research/hepatology-research-group



University of Nottingham


https://www.nottingham.ac.uk/research/groups/giandliverdiseases/index.aspx




Imperial College


https://www.imperial.ac.uk/departme...stems_medicine/digestive-diseases/hepatology/


If you happen to know someone working on any of the above or some other specialist unit not listed , please let me know.