Live tweeting from IiME conference, Friday 3 June 2016

[shannah]

There was one person who asked a question and spoke to me at lunch. I recognized his accent as being Canadian. Older man with a white beard, couldn't see his name on his badge -- I know I have seen him before but just can't place him -- most likely at other IIME conferences. I didn't actually do a lot of talking to anybody today -- too overwhelming. Mark spoke to various people and is writing up a report about it.

@Kina Would this be him by any chance? (Dr. Byron Hyde)

 

[Undisclosed]

@Kina Would this be him by any chance?

Nope, not him

 

[Janet Dafoe]

Ron Davis and Linda Tannenbaum (OMF) in London.

 

[Bob]

Ron Davis and Linda Tannenbaum (OMF) in London. View attachment 15935

Great pic! BTW, the tall building behind the bridge on the right-hand side is the "Shard" - the tallest building in Europe.

 

[Scarecrow]

@Scarecrow, this is @Rose49's preferred post in the same thread (it underwent some minor edits):
http://forums.phoenixrising.me/inde...itochondrial-problem.44821/page-6#post-729447

Thanks, Bob. I've replaced the link with the correct one in my post above.

 

[Kati]

People are still confusing OMF with OMI. If you want to donate to Ron's work on ME/CFS, you need to donate to OMF. http://www.openmedicinefoundation.org
It would be helpful if you changed your tag line, if that is what your intention is. I posted an explanation of the difference somewhere on PR. Maybe someone could provide a link, I'm too clueless to find it.

Thank you @Rose49 i am making a note. Correction made.

 

[simeyss]

Ian Gibson making closing statements. Things can and will change.

I'm out of here.

Thanks so much for doing this, Kina! Really helpful. Rest up, and hope it doesn't take to long to recover

 

[alex3619]

https://twitter.com/i/web/status/738762724277116928

This is a very big issue. Five standard deviations below normal is something that needs some further research, no matter what it is.

 

[Bob]

https://twitter.com/i/web/status/738878104098246656

 

[alex3619]

One thing for sure, with a disease this complex, I truly believe Davis's way is absolutely logical. Get the data first, analyse it, then come up with a hypothesis.

That is what Big Data is about. Get the data, analyze it, create hypotheses, and then study them. You always need more focused studies to really prove anything, but it puts you on a much more fruitful path.

 

[Neunistiva]

That really is exciting and I wish I had $10m to give him! I think we all do. I'm giving what I can, every month.

@Rose49 @Ben Howell @Sasha

I donate every month too. Open Medicine Foundation is really our biggest hope right now.

Speaking of which, please anyone who has Facebook account give them a good review . Some misguided people have given it bad review and it's really a pity. OMF and Dr. Davis deserve 5 stars from all of us

 

[ScottTriGuy]

please anyone who has Facebook account give them a good review .

done.

 

[Never Give Up]

Than you everyone!

 

[Woolie]

Ron Davis has said that he was turned down for funding, twice, I think, because he lacked a hypothesis. This seems to be necessary for funding.

@Comet, I've been on government funding panels in my research area, and yes, most of the (small number of) winning applications have an integrating hypothesis.

Another problem for Ron Davis is that the researchers that review his work will be different from those that review the brain-related stuff. Different sets of expectations (often lower in the brain stuff, I expect).

 

[Kati]

It's nice to hear somebody from the NIH saying they have not taken us seriously for years -- now 24 agencies involved, research money, collaboration etc. Whittemore -- funding over the years has been pathetic. NIH is requesting information how money would be best spent, priorities etc.

Very very thankful Dr Whittemore got involved, looking forward to see how fast they can move.

 

[CeciliaSwe]

Thank you so much! I wish I could just tell you everything! But I can't explain all the science and some of it has to stay confidential for awhile for various reasons. But there is more you could all know if we only had time to get it out there. Just know that whenever I ask Ron to write things or give a talk, he really wants to but he wants to do the research MORE and he only has so much time in a day, especially since part of it is taking a shift with Whitney so I don't go completely bananas! I'm thinking he needs to do some kind of webinar or talk or something, but it's hard to get organized and time is a problem. So just know that his priority is doing the science and figuring this out! We know it's frustrating and that people are rightfully chomping at the bit! So am I! Every morning (sometimes afternoon, depending on how late I'm up with Whitney) when I wake up, he brings me coffee and I quiz him about what has happened that day so far. I wish you could all be flies on the wall. It's so exciting. If everyone knew all of what he's doing, I can't believe he wouldn't get big funding. Linda is really working full time on that angle. And getting NIH to go out of their normal bureaucracy, think about what is the most likely to help and to get answers for the suffering patients, and fund Ron, well, one can always hope! Vicky Whittemore gets it and is very helpful. Ron talked with her a lot at the conference.

I would like to be that fly on the wall! No, I would like to (leave this bed and) bring coffee to all of you, Janet, Ron and Linda. Your part in this, Janet @Rose49 is so incredible important. I cannot see a single minute of film with you and Ron without crying those tears of gratitude. Grateful that you invite us all to your life to bring awareness to this awful thing called ME/CFS. And that you despite the tragedy of your own use so much of your time and energy to encourage us all and contribute to a healthy future for us. Including me.
Thank you so much! I often pray for Whitney and all of your family.

 

[Forbin]

https://twitter.com/i/web/status/738762724277116928

This is a very big issue. Five standard deviations below normal is something that needs some further research, no matter what it is.

I wonder if some of the surpluses were also several SD above the normal means. Too much of something might be equally disruptive.

 

[Nicolas the french guy]

Thank you so much for live-tweeting the event

 

[alex3619]

I wonder if some of the surpluses were also several SD above the normal means. Too much of something might be equally disruptive.

I would expect so.

 

[charles shepherd]

Things are moving forward RE: a UK rituximab trial according to Jo Cambridge. Audience member asked about a UK trial -- much laughing at this point.

Dr Jo Cambridge gave a really excellent and easy to understand presentation on B cell maturation and function in general, how B cell dysfunction and the production of autoantibodies might relate to the immunopathology of ME/CFS, and the practical aspects of using rituximab to treat non malignant conditions where there is evidence of an autoimmune disease process taking place

However, she didn't put any 'meat on the bone' regarding which clinicians might/would be involved in a UK clinical trial; where the trial might/would take place; the development of the protocol, and when a clinical trial might take place here in the UK till the Q and A session

To quote from my scribbled notes:

It's very hard to get a rituximab trial going here due to a combination of -

developing a protocol
obtaining ethical approval
finding the committed clinicians
being expensive in both cost and time
lack of pharmaceutical backing (because pharmaceutical company support has occurred in other trials involving rituximab)

I was going to ask Dr C over lunch what she thought about the less than positive patient evidence from some people with ME/CFS who have been treated with rituximab in America outside the Norwegian clinical trial (which was raised during the meeting in Sussex I did with Dr Amolak Bansal three weeks ago) but wasn't able to do so

Overall, this was a very interesting and encouraging research orientated conference from the point of view of bringing in new researchers, developing new ideas about causative factors, and making use of new methods of investigating the underlying disease process in ME/CFS

So many thanks to everyone involved in both the organisation and the presentations, which took place in an excellent change of location

And it was great to put some faces to names of people from PR in the audience as well!