CMRC - "Report of the fourth Annual Science Conference, 13/14th Sept 2017"

Andy

Andy

Retired committee member
Uniting behind a common goal

Now in its fourth year, the UK CFS/ME Research Collaborative (CMRC)’s annual conference,
held in Bristol in September 2017, brought together scientists, clinicians, industry professionals and people affected by M.E.

The buzz this year was palpable. For me, it really feels like the mood has changed, and that
everyone there felt able to unite behind a common goal – to unlock the biology of M.E.

It’s a feeling echoed elsewhere. Since the conference, the US National Institutes of Health has
announced four grants for CFS/ME research totalling more than $7 million, with the aim of
establishing a coordinated scientific research network,with three research centres and a data
management site working as a consortium to further the understanding of CFS/ME. I look forward to exploring how the CMRC can contribute to, and build on, such powerful
foundations.

On behalf of the CMRC Executive Board I extend a sincere thank you to all those whose energy
and enthusiasm made the conference possible, including our sponsors the Medical Research
Council and Arthritis UK, and to delegates and speakers who travelled from America, Australia
and Europe.

My particular thanks go to volunteers Karen Hainsworth, Emily Beardall, Katrina Pears, Rachel
Ephgrave and Charlotte Stephens, who dedicated considerable time and energy to write this
report, with contributions from Dr Charles Shepherd, Honorary Medical Advisor, ME
Association, and Clare Ogden, Head of Communications and Policy, Action for M.E.

I am also hugely grateful to the Action for M.E. staff team, led by Sonya Chowdhury, for
organising the conference, and for filming the presentations – which have been viewed more
than 7,400 times since at www.tinyurl.com/actionformeyoutube

With input from patients and professionals at the conference, we are already thinking about
next year’s event (see p49), and what needs to happen to make it truly patient-centred. As
someone with a keen interest in M.E. research, your input will be invaluable. Please, join us
– I hope to see you there.

Stephen Holgate
CMRC Chair
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52 page long PDF report at http://www.meassociation.org.uk/wp-...icial-Research-Conference-Report-Jan-2018.pdf
 
Holgate has CMRC on track so merger with BACME will be all part of the big picture no doubt a shame as there were hopes of honest neutrality rather than providing apologies for funding the biopsychosocial model by the MRC.
 
How's a person with ME to read that lot I wonder? A page a day for a year? Thanks for posting though

James said:
Holgate has CMRC on track so merger with BACME will be all part of the big picture no doubt a shame as there were hopes of honest neutrality rather than providing apologies for funding the biopsychosocial model by the MRC.
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I don't think there will ever be an end to funding for bps model research this side of the end of the world/civilisation as we know it. What I'm hoping for is a complete reversal of of the balance of funding. The lions share to biomedical, and a small fraction for bps.
 
I just skimmed through to the end:

“There is no question that patients must be at that meeting – theirs is the most important voice,” said Prof Holgate.
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Right... what have we been saying about PACE Stephen? The most important voice... what was it saying? Did you listen?

It's ridiculous for him to come out with that line at this point (unless it was part of an apology).
 
James said:
Holgate has CMRC on track so merger with BACME will be all part of the big picture no doubt a shame as there were hopes of honest neutrality rather than providing apologies for funding the biopsychosocial model by the MRC.
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It might be a good thing that psychosomatic researcher organizations have been merging. AYME didn't only merge with AfME, but the quack advising AYME was kicked off the bus, despite being the pediatrician for the child of AfME's chief executive.

BACME and CMRC are almost purely composed of quacks, so that isn't going to change, but at least it would then be one organization acting and speaking out against patients instead of two organizations. And it certainly looks worse for them if they're one tiny extremist group in the background, versus the numerous patient charities and other organizations committed to real science.

Their numbers and their influence are dwindling.
 
Valentijn said:
It might be a good thing that psychosomatic researcher organizations have been merging. AYME didn't only merge with AfME, but the quack advising AYME was kicked off the bus, despite being the pediatrician for the child of AfME's chief executive.

BACME and CMRC are almost purely composed of quacks, so that isn't going to change, but at least it would then be one organization acting and speaking out against patients instead of two organizations. And it certainly looks worse for them if they're one tiny extremist group in the background, versus the numerous patient charities and other organizations committed to real science.

Their numbers and their influence are dwindling.
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That's how I'm interpreting this aswell. AYME and AFME merger was out of necessity and I'm sure this one is aswell. They're steadily losing backing, which is great for us.
 
So far I've only looked at the progress report on FITNET feasibility trial on pages 19-20 in the report:

While it’s too early to share qualitative analysis of the treatment experiences, the team is getting positive feedback from those taking part. Nearly 500 referrals into the service in the first 10 months of the trial have resulted in:  179 potentially eligible to take part  122 having an initial phone call with a research nurse  92 having the eligibility assessment and  74 being randomised to treatment.
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So from 500 referrals, they have 74 randomised, so presumably half of these, ie 37 actually doing FITNET. Edit - correction - 37 doing each arm of the trail.

Retention figures, which are a great indicator of acceptability of the trial and its treatments, show 100% completion of the baseline survey; Only 9% lost at three-month survey follow up; and only 7% lost at six-month follow-up. There has been only one withdrawal from the trial to date
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So with the 'losses' and withdrawal, that leaves something between 30 and 36 actually completing the 6 months. (edit - that would be for each arm of the trail).

The trail aims ultimately to recruit 734 children, who will be randomised to one of the two trial treatments on a roughly 50/50 basis
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So at current recruitment rate it will take 10 years to complete the trial, and they will need about 5000 referrals to find sufficient recruits.

As trial manager, Emma explained that she would be presenting initial results from the internal pilot phase of much larger NIHR-funded trial, comparing two treatments for adolescents with CFS/ME; online CBT using the FITNET NHS package, and Skype-delivered activity management.
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So there is no control group. The trial is comparing two online packages, one CBT based, and one activity based. So how will they tell whether there is any value in either over doing nothing but staying home and resting when needed?
Edit to add: She said: ''While most recover at six months with specialist treatment, less than 10% will recover without it.'' Does this mean they will use the 10% figure as their basis of comparison for claiming improvement? Deeply dodgy - didn't that figure come from their 'fatigue' epidemiological study?

The trial (www.bristol.ac.uk/fitnet-nhs) is large and long-running, she explained, and this is just the first phase, now coming up to the one-year point. The objective of the first year was to assess feasibility of recruitment and trial processes, and get early indications of the acceptability of the two trial treatments. If found to be feasible, the full trial will carry on for the next two and a half years, to assess the effectiveness, and costeffectiveness of FITNET-NHS, and to undertake subgroup analysis on co-morbid mood disorders.
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Is this a pilot that will be rolled into the main trial as happened with SMILE? Something to keep an eye on, I think. Including whether they change the primary outcome measure, which at present is the 6 month follow up questionnaires.
 
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I read a chunk of this on the train home yesterday (first day back commuting in seven months following a relapse!). There's some good, some bad in there. As somebody who is in the minority that supports MEA engagement with CMRC, I hesitate to focus on the bad but the FITNET report did jump out, specifically:

While most recover at six months with specialist treatment, less than 10% will recover without it.
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I seem to recall this stat had been debunked - that it was an artificial timepoint and long-term follow up showed similar recover rates? Can anybody provide a link for/against that assertion?
 
I just skimmed though this and pulled out a few bits that might be of interest to others. I've avoided pulling out bits mentioned by others, or referred to by Tuller in his blogs (about MEGA not being funded, etc).

Something about Joint Hypermobility Syndrome at Gabrille Murphy's CFS service:

Of the 184 new patients came through the clinic, 142 of these completed the questionnaire
(76% response rate). Two of these were excluded for incomplete questionnaires. Of the 140
patients, 47 (33.6%) fulfilled criteria for JHS and 93 did not. Eight patients were assessed by Ms
Wall using the Beighton score, with confirmed JHS seen in all patients. In a conservative
analysis, it was assumed that all patients who did not complete the questionnaire did not meet
the screening criteria for JHS. In this case, 47 of 184 (25.5%) is the minimum prevalence of JHS
in this cohort.
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But while most people I know with JHS value the diagnosis as a way of avoiding the CBT/GET that comes with CFS, they say:

The team’s hypothesis is that exercise therapy might be more effective and
tolerable in these patients, but it must be modified.
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I've not quoted from the NHS-FITNET stuff, as someone else already did.

Some stuff from Crawley about her ALSPAC work - isn't that just diagnosing 'CFS' with fatigue questionnaires? And then being excited by the fact that a tendency to answer those questionnaires negatively is correlated with a tendency to answer other questionnaires negatively?

This research is making use of the ALSPAC cohort, and several papers have
now been published.

“A really big problem within CFS/ME research is bias if you recruit only from clinical centres,”
said Prof Crawley, explaining why using the ALSPC cohort is so crucial to this work.
“The reason for that is still only about 10% of children with CFS/ME get a diagnosis from their
GP, often despite repeated visits.”

It’s now well-established, said Prof Crawley, that CFS/ME is more common in families that
experience adversity, as with most other illnesses.
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While the following all sounds good, it's from someone at Bristol Uni who has previously said "We have close links to the School of Social and Community at the University, working with Dr Esther Crawley who is the clinical lead.”

Although we now have a considerable number of studies in this area, Dr Thai concluded, many
of them have used small numbers of patients and produced inconsistent results. What is
needed are much larger studies, longitudinal studies (ie. following changes over the course of
time) and multi-site studies that make use of multimodal neuroimaging.

“Please contact me, share your data with me, ask me for my data,” said Dr Thai, highlighting
the need for collaboration. “Other people today have talked about how imaging is expensive...
well, guess what: it’s cheap! It’s not expensive. A resting state scan can give you whole brain
connectivity, and that takes six minutes; a structural scan, five minutes.

“I do these scans in babies, in children with autism, in patients with dementia, I can do them in
patients with CFS/ME. If you have the right team and protocols, and you can now match your
protocols to UK biobank: you don’t need to recruit controls! So you don’t need to spend that
time and money. For paediatric MRI, there’s the Cincinnati Paediatric Database of healthy
controls, it’s already there – and that has been achieved by data sharing.”
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One delegate commented: "ME is more than just fatigue. Is the CMRC a fatigue collaborative, or an ME collaborative?"
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