Body Politic Twitter IACFS/ME Conference

[Marylib]

Has anyone else plowed through those tweets? It's kind of like watching instant replay at a sporting event. They're like the new spectators who are excited by the action on the field. I'm like..'um, okay any new treatments?' It is always good to see someone paying attention to John Chia. That cheered me up.
https://twitter.com/itsbodypolitic

 

[Martin aka paused||M.E.]

Has anyone else plowed through those tweets? It's kind of like watching instant replay at a sporting event. They're like the new spectators who are excited by the action on the field. I'm like..'um, okay any new treatments?' It is always good to see someone paying attention to John Chia. That cheered me up.
https://twitter.com/itsbodypolitic

We watched most of it and it was just a waste of time, energy and money... The only thing that was new to me was oxaloacetate and serum heparin as a diagnostic test for MCAD. Chia was very disappointing. And the worst were the patient's talks. It showed me that we have not made any step forward since years...

 

[Marylib]

That's pretty much what I picked up on too.

I met John Chia and his wife at one of the previous conferences and they were such lovely people. He was literally standing there saying "I can't get any funding to study enterovirus. No one cares!" After I walked over there to say hello, they said "Thank you for coming to speak with us. How kind of you."

 

[Martin aka paused||M.E.]

That's pretty much what I picked up on too.

I met John Chia and his wife at one of the previous conferences and they were such lovely people. He was literally standing there saying "I can't get any funding to study enterovirus. No one cares!" After I walked over there to say hello, they said "Thank you for coming to speak with us. How kind of you."

Yes I really think that's a field worth investigating

 

[Marylib]

I guess you read that history of enterovirus from one of Maureen Hanson's grad students? If you felt up to reading of course. I've kind of been reading about it for a long time, in bits and pieces. I think it must be elsewhere on the forum, but happy to supply a link if you like @Martin aka paused||M.E.

 

[Martin aka paused||M.E.]

I guess you read that history of enterovirus from one of Maureen Hanson's grad students? If you felt up to reading of course. I've kind of been reading about it for a long time, in bits and pieces. I think it must be elsewhere on the forum, but happy to supply a link if you like @Martin aka paused||M.E.

I read the study 5-7 times already

 

[Marylib]

LOL - yep. Too bad we can't get a PhD from reading it!

 

[perrier]

If all this is the state of the research, this augers very badly, very tragically. It just shows that there is no impetus to go after this crippling illness which strikes young people, as there was to conquer AIDS.

 

[dylemmaz]

We watched most of it and it was just a waste of time, energy and money... The only thing that was new to me was oxaloacetate and serum heparin as a diagnostic test for MCAD. Chia was very disappointing. And the worst were the patient's talks. It showed me that we have not made any step forward since years...

sounds overall depressing and sad

we must not forget though, ron davis the man himself wasn’t there. he certainly has a few tricks up his sleeve. all hope must not be forgotten. i for one am still very hopeful in his metabolic processes experiment that is ongoing. they are learning a lot from whitney’s bad reaction to the medication they tried on him

 

[Martin aka paused||M.E.]

sounds overall depressing and sad

we must not forget though, ron davis the man himself wasn’t there. he certainly has a few tricks up his sleeve. all hope must not be forgotten. i for one am still very hopeful in his metabolic processes experiment that is ongoing. they are learning a lot from whitney’s bad reaction to the medication they tried on him

+1

 

[Reading_Steiner]

I haven't seen that yet, its one a one week delay until we can see the video isn't it ? so it wasn't very good this year ? thats a shame but not wholly unexpected.

 

[perrier]

sounds overall depressing and sad

we must not forget though, ron davis the man himself wasn’t there. he certainly has a few tricks up his sleeve. all hope must not be forgotten. i for one am still very hopeful in his metabolic processes experiment that is ongoing. they are learning a lot from whitney’s bad reaction to the medication they tried on him

Of course, Dr Davis' drive and dedication is unparalleled, bttut he needs cash, and he needs support and there need to be hundreds like him dedicated to eradicating this scourge which is destroying young people--look at the mobilisation during AIDS.

 

[wabi-sabi]

its one a one week delay until we can see the video isn't it ?

Are they putting out videos for the general public? I didn't register due to the cost.

 

[Martin aka paused||M.E.]

Are they putting out videos for the general public? I didn't register due to the cost.

Afaik only for registered users... But you didn't miss anything important

 

[Marylib]

Maybe not important to you. But history has told - and will tell - a different tale.

 

[Martin aka paused||M.E.]

Maybe not important to you. But history has told - and will tell - a different tale.

Whut? I meant that it was nothing new. Except a very few things like serum Heparin as a diagnostic test for MCAD.

 

[Marylib]

No worries, Martin. You have to understand that I am an old lady who has seen too much and expects very little. Les Simpson reported the red blood cell deformability before you were born, most likely. At a certain point people like me just disappear and no matter how hard we try, we can't help.

 

[Martin aka paused||M.E.]

No worries, Martin. You have to understand that I am an old lady who has seen too much and expects very little. Les Simpson reported the red blood cell deformability before you were born, most likely. At a certain point people like me just disappear and no matter how hard we try, we can't help.

Now I really don't get your point?! Let us leave it at that.