Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

slysaint

slysaint

Senior Member
Messages
2,125
Just been reading the handout:

Rons opening:
"
Dear Friends,
I want to personally welcome you to this day of presentations by a group of superb scientists!
I greatly respect each of them and am always impressed with their creativity, dedication and
rigor.
I’m excited to have them all together, analyzing and integrating all of our data, brainstorming and
thinking out of the box about how to put it all together, and planning next steps so that the
research can move as fast as possible with the most qualified scientists doing work they are good
at to cure this horrid disease. As I look at my son, Whitney, my heart cries for his suffering and then it connects to all of you patients who suffer with him. As I watch my wife, Janet, caring for our son into the early
morning hours, giving up so much of her life, I think of all you caregivers who walk with her on this path caring for your loved ones.
Of course I am constantly thinking of all you doctors and scientists, trying to absorb all the data
you have collected, feeling all of our pain at the painstaking process that never moves fast enough,
and trying to find the best to join our collaboration.
"
Full text and schedule here:
https://www.omf.ngo/wp-content/uploads/2017/08/OMF-Symposium-Event-Handouts.pdf
"
 
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Rrrr

Senior Member
Messages
1,591
they key for me is if there is anything actionable i can do now. i.e. treatments!!!!! i know they can't recommend treatments, but maybe we can gleen something that can be translated into a treatment...? i need some hope.
 
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Rrrr

Senior Member
Messages
1,591
wow, @mango, you rock!

i feel i'm on an emotional roller coaster watching this conference. i am swinging back and forth between so happy (that there is this group of researchers rushing to help me and us) and so sad (that it looks like it could still be so long before we get real help; research takes so long).
 
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Rrrr

Senior Member
Messages
1,591
@Ben Howell FYI, I did many FMT and they did not change my ME. But each time I did it, it improved my gut issues for 6-8 wks, then my gut issues returned. i have heard this from a number of other ME patients too. (Gut issues can be constipation or whatever, not being able to tolerate certain foods, etc.) However, I know an 15 yr old woman who it helped with her autism spec. disorder. I don't know if it stuck or was temporary.
 
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