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Invest in ME Conference June 2nd 2017

Jo Best

Senior Member
Messages
1,032
@JoBest Thank you so much for this link and is there any way that the public (me :D) can find out what was said in her presentation re: the immunoadsorption trial (or was this only for the researchers and not recorded)? Thanks in advance in case anyone knows.
I would really like to know this as well!
Hi @Gingergrrl and @Jesse2233 :) All I know is that Invest in ME Research wrote..
"We hope to have a report out from the Colloquium with contribution from major researchers."
So hopefully that will happen and it will be a document that may be shared for educational purposes, like the summary (aimed at doctors I think) they produced after the 2014 colloquium and conference.
 

me/cfs 27931

Guest
Messages
1,294
Finally out of bed following the conference exertion. Never would have made it through the day without a morning and afternoon dose of Vyvanse.

Wanted to mention that in my conversation with Vicky Whittemore, she repeatedly talked about NIH Director Francis Collins and how he was genuinely committed to solving ME/CFS. Things are changing. She seemed dismayed when a nurse practioner (there for continuing education credits) from the US told her that few doctors believe ME/CFS is a real illness.

Beth Unger (CDC) seemed genuinely interested in my story, but was vague in her responses about what the CDC is doing to change things. I didn't learn anything new from the conversation.

David Tuller expressed ongoing frustration in his dealings with the CDC, and is skeptical that they will remove GET/CBT recommendations from their website. He's also very passionate about tearing down the PACE trial (no surprise).

I was fading/foggy in my conversation with Ron Davis, and sadly have little recollection.

Would have liked to have more/longer conversations, but had to repeatedly rest during the conference breaks.
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I noticed from one of the tweets 2 things from Ron's research that I wanted to comment on:

1. Cell free DNA appears normal. I don't know what test he is using or what test Dr Myhill uses, and even if I did know I wouldn't understand it, but just to say that I know Dr Myhill finds very high cell free DNA numbers in her patient group. Mine was 26, with someone on chemo or with flu experiencing around 28 that's considered very high for someone who 'isn't physically sick' (according to the NHS).

Cytokines normal - A lot of research has shown varying levels, with Lipkin and Hornig's then adding to the fray with different levels in pre and post three year duration patients. KDM finds elevated levels of cytokines in a large percentage of his patients. for me IL8 particularly has been consistently very elevated.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @justy,

If I remember right cell free DNA was raised in severe patients, just not to the extremes of cancer patients. As for the cytokines, hopefully someone else can comment as I don't trust my memory. I have a feeling perhaps one or two were abnormal but not across the board as found in other studies.

Ryan
 

Gingergrrl

Senior Member
Messages
16,171
Hi @Gingergrrl and @Jesse2233 :) All I know is that Invest in ME Research wrote..
"We hope to have a report out from the Colloquium with contribution from major researchers."
So hopefully that will happen and it will be a document that may be shared for educational purposes, like the summary (aimed at doctors I think) they produced after the 2014 colloquium and conference.

Thank you so much @Jo Best and I will follow the conference threads and see if anything is posted in the future re: a summary that includes Dr. Scheibenbogen's work on the immunoadsorption study. If you ever hear of anything and happen to remember me (@Gingergrrl) or @Jesse2233, can you send one of us a PM? Absolutely no worries if you don't hear anything or not able to do it. Thanks again!
 

halcyon

Senior Member
Messages
2,482
2. Multiplex viral sequencing in clinical samples with analyses of viruses. No viruses were detected in most ME/CFS patients. Healthy controls had more viruses than the patients. 3. Search for new pathogens – This was complex analysis but no new pathogens were found. 2 TT viruses were found, but controls had more than the patients.
@Janet Dafoe (Rose49) what blood compartments were looked at specifically in this research?
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Every time I read Ros's reviews I think couldn't she make it interesting !! She's my doctor but honestly I think she puts zero effort into these write ups and shouldn't be paid to go to these meetings. That's just my opinion of reading them for the last 15 years and the reason I got out of ANZMES. I hope prof Tate got financial help from ANZMES for attending .
Ros writes with no emphasis on what's new or amazing or crucial or anything. It makes me wonder if she understands any of it ! Sorry but that's my opinion
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Probably Ros is putting effort in and the more people from my part of the world who are at these conferences the better as far as I am concerned. But yes, I agree it's pretty hard to get much out of the write up and I was disappointed.

Maybe it would be better for a knowledgeable science journalist to be funded to do it? That might result in both a more readable report and a well-informed journalist who can then prepare pieces for the media without much further effort.
 

Jo Best

Senior Member
Messages
1,032

Jo Best

Senior Member
Messages
1,032