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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

Messages
53
A general question, not sure who to direct it to, many people with ME/CFS seem to have varied etiologies, how much overlap do they think there is, is it the same condition or several under one umbrella?

I would ask Dr Davis where he expects the research to be 1, 2 and 5 years from now.
Also i would ask him how the recent funding changes affect his lab and what are the chances they will get the money they were writing up the grant for this spring.
I don't know if it would be appropriate to ask Dr Davis these questions directly though.
Great questions! I'll see what I can do.
 

Janet Dafoe

Board Member
Messages
867
Wonderful dinner tonight at the hotel with those who flew in today.
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Alain Moreau, Cindy Bateman, Mario Capphechi

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David Bell, Maureen Hansen

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David Maughan, Cindy Bateman, Baldomero Olivera, Ron Davis

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Linda and Don Tannenbaum, Jonas Bergquist

And Ashley and I were there too!

Everyone is excited about this science meeting!
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Wonderful dinner tonight at the hotel with those who flew in today. View attachment 22988
Alain Moreau, Cindy Bateman, Mario Capphechi

View attachment 22989
David Bell, Maureen Hansen

View attachment 22990
David Maughan, Cindy Bateman, Baldomero Olivera, Ron Davis

View attachment 22991
Linda and Don Tannenbaum, Jonas Bergquist

And Ashley and I were there too!

Everyone is excited about this science meeting!

Awesome pictures. Thanks for these Janet! It's so nice to see everyone. Baldomero Olivera and Ron look particularly cheeky!


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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
What would you ask them if you were there?

I would ask Ron, or anyone that would listen what they think about the high prevalence of EDS and MCAS in our patient community. Are people like me with both co morbidities which are worsening over time misdiagnosed as having M.E? and we really just have primary MCAS/EDS? Or is M.E really MCAS, or could we just have both - how on earth are patients like me (who often have clinical Lyme dx as well) meant to unravel all this nonsense?

secondly familial illness - three generations of women in my family and we didn't all know each other growing up. Who is looking into this and what does it mean? are we another subset?

Im going to try and watch some live from my bed, but don't know how much ill manage. Thanks to all who are putting on this event, attending, tweeting etc
 

TreePerson

Senior Member
Messages
292
Location
U.K.
On the eve of this great symposium, I am praying, chanting, meditating and dancing for these scientists/researchers to come together with their ideas and teamwork to find a treatment/cure for this awful disease.
Anything is possible!
Well I can't dance but I've been chanting to the elephant god who removes all obstacles for a while now. I also did it in the UK general election it nearly worked! LOL. Wishing them all so much strength inspiration funding resources and luck.
 
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Messages
66
Everyone is excited about this science meeting!
Too true! Another gathering of great minds working collaboratively on our behalf that inspires so much hope and positivity. A much needed contrast to all the negativity surrounding this illness; especially from this side of the pond.

To all involved : Your belief and faith in our lived experience and willingness to share your expertise and knowledge to work towards positive change is very much appreciated. Thank you.
 
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Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Looking forward to this! A taste of hope is what I'm hoping for! I'll be there in person, with husband in tow, travel plans willing... First major conference/symposium on ME/CFS I've attended since the AACFS conference in San Francisco in 1996.

So please you and your husband can make it in person @valentinelynx . As well as @Webdog being there too :)


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Mary

Moderator Resource
Messages
17,335
Location
Southern California
@Ben Howell and @Janet Dafoe (Rose49) - thanks for all the updates and pictures! Janet, I'm so glad you're able to spend some time there! :)

I wanted to go quite badly, but my son who lived in the area was transferred back to Texas with very little notice - sob! :aghhh: and it would have been too difficult (and expensive) for me to manage with no home base there so to speak. so will the next best thing and watch on-line :nerd: