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CMRC conference 2016 AfME report on presentations

Messages
2,125
https://www.actionforme.org.uk/uploads/pdfs/cmrc-conference-2016-selected-presentations.pdf

"
Prof Holgate then laid out how MEGA would proceed.
“Starting with genomics and DNA
sequencing but then spreading all the way through the cellular processes, through
transcriptomics, proteomics, metabolomics and even
microbiomics and serumomics, we’ll be
looking to pull this all together and come up with
some pathways.”
There was one important element he was keen to stress. “We can have all the -omics in the
world but unless we get the patients and the phenotyping right then it’s all a waste of time"

o_O

After thanking the conference organisers and delegates, Prof Holgate expressed the deep need
for continued commitment to and enthusiasm for this project from scientists, patients and the
CFS/ME community.

:lol:
 
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A.B.

Senior Member
Messages
3,780
Are these the studies that were funded by the CMRC?

Biological Fingerprints of Fatigue in Primary Sjögren’s Syndrome
Fatigue in Primary Sjögrens Syndrome is associated with lower levels of pro-inflammatory cytokines

I heard something along the lines of money intended for ME/CFS being spent on Sjögren's and some other autoimmune disease.
 
CONTENTS

BIG DATA, BIOMARKERS AND STRATIFICATION

  • Researching a syndrome: Findings from the UBC Complex Chronic Disease Study Group, Dr David Patrick, University of British Columbia
  • All In at the Solve ME/CFS Initiative, Dr Zaher Nahle, Solve CFS/ME Initiative
  • States, traits and diagnosed conditions: implications for the design of population-based studies of human health and disease, Prof George Davey Smith, MRC Integrative Epidemiology Unit, University of Bristol
  • The potential role of epigenetics in CFS/ME research and MEGA, Prof Caroline Relton, University of Bristol
  • SAIL Database: routinely collected data for research, Prof David Ford, Swansea University

WORKSHOPS
  • Exploring the challenges of gaining CFS/ME funding for the range of science required
  • Research with people with severe CFS/ME
  • CFS/ME and POTS

MRC-FUNDED PROJECT UPDATES
  • Biological Fingerprints of Fatigue in Primary Sjögren’s Syndrome, Dr Nadia Howard-Tripp, NIHR Academic Clinical Fellow in Rheumatology, on behalf of Prof Fai Ng
  • Understanding the pathogenesis of autonomic dysfunction in CFS and its relationship with cognitive impairment, Prof Julia Newton, Director of Newcastle Academic Health Partners and Clinical Prof of Ageing and Medicine, Newcastle University
  • Persistent fatigue induced by interferon alpha: a new immunological model for CFS/ME, Alice Russell, King’s College London, on behalf of Prof Carmine Pariante
  • Modulation of Aberrant Mitochondrial Function and Cytokine Production in Skeletal Muscle of Patients with CFS/ME, Prof Anne McArdle, Institute of Ageing and Chronic Disease and MRC Arthritis Research UK Centre for Integrated Research into Musculoskeletal Ageing, University of Liverpool
  • Slow wave sleep and daytime functioning in CFS/ME, Dr Sue Wilson, Hon Senior Research Fellow, Centre f
  • or Neuropsychopharmacology, Imperial College London

NEW RESEARCH
  • Mapping global research funding over the last 10 years: a UK CFS/ME Research Collaborative-sponsored report, Sonya Chowdhury, Chief Executive, Action for M.E.
  • Enhancing research funding applications into CFS/ME – part one, Dr Lindsay Keir, Senior Portfolio Developer, Wellcome
  • Enhancing research funding applications into CFS/ME – part two, Dr Neha Issar-Brown, Programme Manager for Population Sciences and Public Health, Medical Research Council
  • The Brain in Pain studies: central sensitisation in CFS/ME and fibromyalgia, Dr Julius Bourke, Queen Mary’s University, London
  • Voxel-based morphometry shows reductions in brainstem white matter in CFS/ME, Dr Andreas Finkelmeyer, University of Newcastle
  • Immune-pain interaction following exercise in CFS/ME: associations between exercise-induced hyperalgesia, complement system and elastase activation, Dr Andrea Polli, University of Brussels

CHILDREN AND YOUNG PEOPLE
  • Improving quality of care in paediatric chronic fatigue syndrome, Dr Sarah Knight, Murdoch Children’s Research Institute
  • Investigating the treatment of Paediatric CFS/ME, Prof Esther Crawley, University of Bristol
  • Involving severe and very severely affected CFS/ME individuals in research: a clinician’s view point, Victoria Strassheim, Newcastle University
  • The visualisation of CFS/ME’s invisibilities, Dr Juliet Chenery-Robson, University of Sunderland
  • Investigating the possibility of a role for mtDNA variation in CFE/ME, Joanna Elson, Mitochondrial Research Group, Institute of Genetic Medicine, Newcastle University

PLENARY SESSION
  • Fatigue in Primary Sjogrens Syndrome is associated with lower levels of pro-inflammatory cytokines, Dr Nadia Howard-Tripp, NIHR Academic Clinical Fellow in Rheumatology
  • The role of autonomic function in exercise-induced endogenous analgesia: a case-control study in CFS/ME and healthy people, Dr Jessica Van Oosterwijck, University of Antwerp
  • Anne Faulkner Memorial Lecture, Prof David Jones, Newcastle University
  • Closing remarks and reflections: Where next for the UK CFS/ME Research Collaborative?, Prof Esther Crawley, University of Bristol
Above is from table of contents - PDF available here https://www.actionforme.org.uk/uploads/pdfs/CMRC-conference-report-2016.pdf
 
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Prof Holgate then laid out how MEGA would proceed. “Starting with genomics and DNA sequencing but then spreading all the way through the cellular processes, through transcriptomics, proteomics, metabolomics and even microbiomics and serumomics, we’ll be looking to pull this all together and come up with
some pathways.”

There was one important element he was keen to stress. “We can have all the -omics in the world but unless we get the patients and the phenotyping right then it’s all a waste of time.”
Well, I can't fault his reasoning here, as far as we can tell at this point, MEGA is a waste of time.

After thanking the conference organisers and delegates, Prof Holgate expressed the deep need for continued commitment to and enthusiasm for this project from scientists, patients and the CFS/ME community. This, he said, was essential to get the study funded. Presaging the new and exciting era to come, he concluded, “We are on the threshold of an extraordinary journey.”
Lol, the guy is so two-faced it's unbelievable. What he basically means is that the patients should just agree with him, because he thinks he's right.
 

A.B.

Senior Member
Messages
3,780
Invest in ME offers a more interesting program.

Biological Fingerprints of Fatigue in Primary Sjögren’s Syndrome

This seems barely even relevant to ME/CFS. There must be hundreds of diseases with fatigue as important symptom.

Persistent Fatigue Induced by Interferon-alpha: A New Immunological Model for Chronic Fatigue Syndrome

There's some info on this here http://gtr.rcuk.ac.uk/projects?ref=MR/J002739/1

They're going to study people with hepatitis C infection being given interferon alpha. These people often have intense fatigue lasting up to a year after treatment.

The problem here is that ME/CFS might not be the same as self limiting post-infectious fatigue. In mono, it's said that about 10% of patients will go on to develop ME/CFS, but most will have some sort of post-infectious fatigue. Their sample size isn't large enough to provide insights the presumably small proportion of patients that will go on to actually develop ME/CFS. Moreover, they will assess patients at six months after treatment which is the minimum to even qualify for a CFS diagnosis in most countries. The Lipkin finding of a cytokine profile changing over time is not acknowledged either. It seems unlikely this study will yield any useful information.

Note to UK researchers: ME/CFS is a complex systemic disease, not "persistent fatigue".
 
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Cinders66

Senior Member
Messages
494
I've pointed out to AFME that they missed out Dr Nahles spin slide 4 on CBT & GET, although they quoted him earlier (in this report) about the USA addendum on it.

Also they say the 2012 funds was due to a highlight notice when it was a guaranteed funding call for applications which is a more effective means of stimulating research but MRC refuse to do again with CFS

I don't think this CMRC conference reflects the urgency CFS research deserves , I didn't regard this conference much and I dont think uk science is advancing the field much