Science at the UK CMRC Conference, 1-2 Sept 2014

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The tweets are very vague, basically just headers. Would be nice if we can get any meat like what we get in the USA based conferences. No offence I know you are all doing what you can, just an observation see if anybody can get more details and meat.
 

Scarecrow

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Thanks, Scarecrow - that patients/researchers collaboration workshop looks very interesting. Looking forward to hearing what came out of that.
The patient/researcher collaboration was a difficult one for me. I struggle to take in information aurally and maintain concentration.

We were split into tables by topic each covering a different aspect of research, broadly:
1. Recruitment.
2. Participation
3. Research priorities
4. Dissemination
5. What does a successful collaboration look & feel like?

This session was split into two. In the first shorter session we discussed our basic views and ideas about research before moving on to our chosen topic. The two biggest areas of agreement at our table were, as I recall, listening to patients and sub-grouping for research.

In fact, the second was mentioned by at least half the tables and if there is one message to take from this conference it is that patients and researchers are in agreement about it.

We wrote a lot down on post-its which were collated on posters at the side of the room. I had intended to take notes but by the time left, well before the end, the posters had been taken down. Epic fail on my part . Sorry, folks.

I'd hope that that this information will be emailed but I'm not sure.

[Edited for spelling]
 
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Scarecrow

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Hi Scarecrow, are you able to tell us if the embargo is in relation to the cytokine research, or something else? (Please don't worry if you're unable to say anything.)
Sorry, I don't know. That was me reacting to Justy posting Sonya Chowdhury's tweet.

[Edited for spelling]
 
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Sasha

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They'll be doing the final winding up stuff now - looking forward to our attendees getting back home and telling us what they can.

I think there's a real tension between following what's going on and live tweeting so I'm grateful for what we got even though I wish we could have had more. Pity that most of us are just too clapped out to go to this kind of thing and provide a live feed.
 

Scarecrow

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The tweets are very vague, basically just headers. Would be nice if we can get any meat like what we get in the USA based conferences. No offence I know you are all doing what you can, just an observation see if anybody can get more details and meat.
Hi, Inester. I think that our best hope for information on day 2 (i.e. today) will be Simon McGrath and Jonathan Edwards. I believe Simon is the only non researcher allowed in today. I fear there will be significant restrictions on what he is able to report.
 

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OK, back to yesterday and the panel discussion. I won't summarise all of the VERY short presentations given but I'll list all the panel members here, then give a separate post for each summary that I do give.

1. Robert Dantzer (University of Texas) - fatigue in cancer patients.

2. Andrew Lloyd (University of New South Wales) - Infection outcomes

3. Ian Lipkin (Columbia University) - Infection

4. Stuart Watson , representing Julia Newton (Newcastle University) - Autonomic dysfunction

5. Fai Ng (Newcastle University) - fatigue in Sjogrens patients

6. Susan Wilson, representing David Nutt (Imperial College) - Sleep studies

7. Anne McCardle (University of Liverpool) - Muscoskeletal biology

8. Esther Crawley (University of Bristol) - paediatric epidemiology

9. Carmine Pariente (Kings College) - IFN alpha induced fatigue in Hep C patients

Phone battery is running low and almost back at the bus station. I'll be back in about half an hour!
 
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Simon

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Summary of the UK CMRC Conference, Day One (Mon Sep 1)
largely based on tweets: thanks to Sonya Chowdhury [SC], Action for ME [AfME]

Background to conference from Conference Chair Prof Stephen Holgate:
“The aim of this particular conference is to increase collaboration and research in CFS/M.E. This is why we have invited researchers currently working in CFS/M.E., as well as those working in related fields (eg. pain) to attend.

“The conference will be a mixture of lectures and workshops and we hope that by bringing established and new researchers together, the conference will be an excellent opportunity to build on current CFS/M.E. research programmes and develop new ones. “

We are excited by the level of interest and the number of international and national researchers attending this conference. We are particularly pleased that it is attracting researchers from outside the CFS/M.E. field, which we believe will grow research in this area.”
Monday Morning
Plenary Session 1: Inflammation
Chair: Hugh Perry


Anne Faulkner lecture given by Prof Robert Dantzer
SC said:
UK #mecfs Research Collaborative underway. 72 researchers enjoying the sharing insight from study on inflammatory markers:

"there is ample evidence that inflammation induces fatigue". "We need to deconstruct fatigue" "We're already finding out what's going on in the brains of people with cancer. We must do the same for MECFS"
Neil Harrison: Interferon-α rapidly changes brain microstructure
SC said:
Neil Harrison outlining what interferon mediated fatigue is and learning from Hepatitis C field

Alice Russell: Interferon-alpha (IFN-α) induced Persistent Fatigue
SC said:
The role of interferon-alpha and it's potential. Persistent fatigue in Hep C.
What can we learn? Study to explore with patients across CFS and Hep C and healthy controls: - incl gene expression in the study
Lisa Blundell: Blood cytokine concentrations in CFS: a systematic review
SC said:
Our understanding of cytokines is in our infancy and TGF-beta requires further exploration."
[I wonder if the two large studies by Dr Jose Montoya and Dr Ian Lipkin, awaiting publication, will throw more light on this]

Kate Earl: Resveratrol treatment on TNF-α-induced cytokine release
- nothing tweeted on this.

Lunch and poster viewing
"Posters" are unpublished 'abstracts' of work underway, a sort of 'breaking news' section. These posters will be published together at a later date.

Workshops
Workshop 1: Working together for more and better research that benefits people with CFS/ME (Associate member/patient and researcher session) - facilitated by Sally Crowe

SC said:
Sally Crowe introducing the researcher/associate member workshop. 80 participants including MRC, Profs Lipkin, McArdle, Lewith and others
Sonya Chowdhury said:
Collaboration is essential. Patient and public involvement is the only way forward
I'll leave proper reporting to those who were there eg @Scarecrow 's initial report

The remaining workshops were researcher-only (hence no tweets). Their purpose was to discuss particular areas of common interest, and were specifically there to help kick start collaborations.

Workshop 2: Pain – facilitated by Prof Maria Fitzgerald

Workshop 3: Sleep & fatigue – facilitated by Sue Wilson

Workshop 4: What should we measure? Core outcome sets & PROMs – facilitated by Sarah Brookes
[Great to see this happening, but I can't help feeling patients could have made a particularly valuable contribution here: 'What outcome should we measure?'. The ones that patients say are important to them is an obvious answer.]

Workshop 5: Inflammation & infection – facilitated by Hugh Perry


Panel discussion for Researchers and Associate Members
Robert Dantzer, Andrew Lloyd, Ian Lipkin, MRC-funded PIs
Each gives 5 minute summary of research and panel discussion

Networking wine reception
For Researchers and Associate Members

Dinner for Researchers


Sonya Chowdhury also said:
Great chat earlier with genomics Prof keen to work in this field. Hopefully #mecfs Research Collaborative Conference will help entice him!

Researcher: "I visit severely affected at home". fantastic to hear but it is so rare!
 
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greeneagledown

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Hi Scarecrow, are you able to tell us if the embargo is in relation to the cytokine research, or something else? (Please don't worry if you're unable to say anything.)
@Bob -- I immediately thought the same thing, since the tweets came so close together, but upon reflection, I think Lipkin must be alluding to something other than his cytokine research. He and his team have already talked about that research quite a bit publicly, including at this conference, while this "hot stuff" is something he says he can't give details on, which would rule out the cytokine research. Plus, I don't think he'd call it "hot stuff" if it's something everyone has heard already.

I'm guessing he's referring to a new finding related to RNA expression, metabolomics, proteomics, pathogens in white blood cells, or the "dumbed down" gut study they've been doing (not the giant one they're currently crowd-funding for). I believe those are all the major projects they've been working on.

Some sort of breakthrough RNA expression finding would not be a surprise, since they thought they had one in a previous study before they had to throw out the results for technical reasons that are beyond my comprehension.
 

Bob

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@Bob -- I immediately thought the same thing, since the tweets came so close together, but upon reflection, I think Lipkin must be alluding to something other than his cytokine research. He and his team have already talked about that research quite a bit publicly, including at this conference, while this "hot stuff" is something he says he can't give details on, which would rule out the cytokine research. Plus, I don't think he'd call it "hot stuff" if it's something everyone has heard already.

I'm guessing he's referring to a new finding related to RNA expression, metabolomics, proteomics, pathogens in white blood cells, or the "dumbed down" gut study they've been doing (not the giant one they're currently crowd-funding for). I believe those are all the major projects they've been working on.

Some sort of breakthrough RNA expression finding would not be a surprise, since they thought they had one in a previous study before they had to throw out the results for technical reasons that are beyond my comprehension.
Hi greeneagledown, that's exactly the conclusion I came to in the end, for the same reasons. Like you say, it would be interesting if his self-funded RNA study came up with some results. He was really excited about the first set of results but had to scrap them and start again because they discovered a flaw in the collection process which made the results redundant. And, yes, it could also be one of the other studies that are in the pipeline.
 
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Scarecrow

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Andrew Lloyd Summary of Panel discussion presentation

They looked at the mechanisms underlying the disease process and post infective fatigue. The beauty of their study is that it starts on day one of the illness, and examines the acute phase and recovery. [In other words, they're not presented with a post infective fatigued patient and left wondering what's happened before they got into that state.]

I don't think that this was anything other than a very short summary of the Dubbo study, although I don't remember EBV, Ross River Fever or Q Fever being specifically mentioned.

Incidentally, Lloyd (an Aussie) got by far the biggest laugh of the day when Stephen Holgate directed a patient's question to him about the CFS terminology. He replied "We Australians tend to take a very relaxed view about these things" It was all in the delivery. Comic genius. You had to be there.

Lipkin got the second biggest, and slightly uncomfortable, laugh of the day when Holgate punted a question about gut issues to him, saying he wasn't going there. (Hmmm!)

[Edited to make it clear that this summary relates to the Panel discussion for the patient session on 1 Sep]
 
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Scarecrow

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Fai Ng Summary of Panel Discussion presentation

Studying fatigue in Sjogrens syndrome
  • about 30% of Sjogrens patients don't have fatigue at all
  • anti TNF treatments in Sjogrens (and in RA) completely clear fatigue in a subgroup of patients
  • in some patients, fatigue remains even after inflammatory symptoms are treated
[Edited to make it clear that this summary relates to the Panel discussion for the patient session on 1 Sep]
 
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Scarecrow

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Hi greeneagledown, that's exactly the conclusion I came to in the end, for the same reasons. Like you say, it would be interesting if his self-funded RNA study came up with some results. He was really excited about the first set of results but had to scrap them and start again because they discovered a flaw in the collection process which made the results redundant. And, yes, it could also be one of the other studies that are in the pipeline.
I thought he'd given up because of the flaw. Did the lab run the tests again at no charge?

I'm trying to remember the initial conclusion before they discovered the error.
 

Scarecrow

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Susan Wilson Summary of Panel Discussion presentation

This was a 'psychopharmacology' sleep study. The treatment artificially increases deep sleep.

From what I could gather it only involved patients. They were required to come into the centre for two separate weeks. On one occasion the treatment was administered and on the other, the placebo.

The affect on function was measured. I think that subjective and objective measures were used.