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UK Research Collaborative Conference in Newcastle: 13th - 14th October

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The slate of speakers is still being finalised but there will be two plenary sessions on neuropathology led by Hugh Perry, Professor of Experimental Neuropathology for Biological Sciences at the University of Southampton, and a session on clinical trials led by Dr Øystein Fluge, who is investigating the use of Rituximab in people with ME/CFS at Bergen University, Norway.

Other listed session chairs include Professor Jim Horne, Professor George Davey-Smith and Professor Jo Nijs.

The collaborative’s founder-chairman, Professor Stephen Holgate, will be much in evidence and will summarise the event at its end.
 
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Professor Jose Montoya from Stanford, USA, has accepted our invitation to participate as a Keynote Speaker in the opening Plenary Session covering the neuropathology of ME/CFS, which will be chaired by Professor Hugh Perry

Other speakers will be announced in due course

Tuesday 13 October


9:30 -10:30

Registration

10:30 – 12:30

Plenary Session 1: Neuropathology

Chair: Prof Hugh Perry

Keynote Presentation:

Prof José Montoya10-30 – 11:30

Speaker TBC11.30 – 11.45

Speaker TBC11.45 – 12.00

Q&A12.00 – 12.30


Professor Jose Montoya:

https://med.stanford.edu/profiles/jose-montoya

Stanford research on neuropatholgy of ME/CFS:

http://med.stanford.edu/news/all-ne...bnormalities-in-chronic-fatigue-patients.html

Professor Hugh Perry:

http://www.southampton.ac.uk/biosci/about/staff/vhp.page
 

Scarecrow

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http://www.eventzilla.net/web/event?eventid=2139069963
Associate Members will be able to register from 1 May 2015. This is to help manage the registration process. The Associate Members' session will be held 13 October 14.00 - 19.30. The remainder of the science conference is closed to researchers. [edit: should this be non-researchers?]
The associate members' session includes a joint workshop with researchers on patient reported outcome measures.
 

aimossy

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I have my fingers crossed hoping Julia Newton may attend and speak at the conference this year.
 

Scarecrow

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Esther12

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I have my fingers crossed hoping Julia Newton may attend and speak at the conference this year.
It's Deary's area too, although he doesn't seem to be involved in much research anymore. His guides for treating patients are pretty vile.

No more details seem to have been filled in on who will be there.

Esather Crawley is the chair of the session on clinical trials... lets hope someone pushes her on the shit design of SMILE and her claim that PACE showed CBT/GET led to a recovery rate of 30-40%.
 

user9876

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It's Deary's area too, although he doesn't seem to be involved in much research anymore. His guides for treating patients are pretty vile.

No more details seem to have been filled in on who will be there.

Esather Crawley is the chair of the session on clinical trials... lets hope someone pushes her on the shit design of SMILE and her claim that PACE showed CBT/GET led to a recovery rate of 30-40%.
I think the key thing to push on clinical trial design is the problems with subjective measures when treatments such as CBT or the lightening process are designed to change perception of symptoms.
 

Sasha

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I posted this in the wrong place earlier so here it is again:

Just read this on the MEA's site - look, there'll be livestreaming!!!

Not quite sure of what. Is it the whole conference, @@charles shepherd?

http://www.meassociation.org.uk/201...newcastle-cmrc-conference-13-14-october-2015/

MEA said:
www.eventzilla.net/web/event?eventid=2139069963

Sign up as an Associate Member here: www.meassociation.org.uk/wp-content/uploads/cmrc-membership-form.docx

Interact with ME/CFS scientific researchers | Newcastle CMRC conference | 13-14 October 2015
People who fancy interacting with science researchers can do so later this year – when the UK CFS/ME Research Collaborative holds its second scientific meeting at the Newcastle Novotel on October 13-14.

Non-researchers can join the collaborative by becoming associate members. The Twitter home for the event is #CMRC2015.

There will be a workshop on patient-reported outcome measures, facilitated by Dr Kirstie Haywood, senior research fellow (patient-reported outcomes) in the Division of Health Sciences, Warwick Medical School, University of Warwick.

Prof Liz Perkins will deliver a presentation on social policy research and M.E, plus there will be updated on current research funded by the Medical Research Council. This will be followed by a Q&A session, giving Associate Members the chance to discuss researcher’s work with them.

You must be an Associate Member to attend and registration is free. Associate Members don’t have to be researchers – anyone with an interest in M.E. can become one.

Livestreaming will be available so Associate Members unable to attend can catch the event online from home.

Prof José Montoya from Stanford University, California, will be joining the event as keynote speaker in the session on neuropathology. The ME Association is helping with the cost of bringing over overseas speakers, including Prof Montoya.

Other speakers will include Prof Jo Nijs (autonomic system), Dr Øystein Fluge (Rituximab Trial), Prof Jim Horne (sleep), Prof George Davey Smith (big data, genomics, epigenetics and metabolomics).

Chairs of individual sessions include Prof Julia Newton, Prof Hugh Perry, Dr Esther Crawley and CMRC chair Prof Stephen Holgate.

Register to attend #CMRC2015 online here (where you can also check out the programme):www.eventzilla.net/web/event?eventid=2139069963

Sign up as an Associate Member here: www.meassociation.org.uk/wp-content/uploads/cmrc-membership-form.docx
...and @Simon made an interesting response:

http://forums.phoenixrising.me/inde...wcastle-13-14-october-2015.38283/#post-610284

Apologies for confusion over starting another thread on this (which is now closed).
 

Bob

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I am pleased to announce that Associate Members can now register to attend a joint session with researchers as part of the UK CFS/ME Research Collaborative Conference which will be held at the Novotel (Airport) Hotel in Newcastle. This session will include a joint workshop exploring Patient Reported Outcome Measures, facilitated by Dr Kirstie Haywood from Warwick University, presentations from Prof Liz Perkins and the Medical Research Council funded researchers and a panel discussion. This will be followed by a drinks reception. As with last year, the remainder of the conference is closed to active researchers only.

There is no cost for this event thanks to the generous support of the Medical Research Council and some new funders that we are currently engaging with.

You can register for the conference at: www.cmrcprom.eventzilla.net Please note, this session is only open to Members of the Collaborative. If you have family or friends that wish to participate, they will need to become members as soon as possible to secure a place. Details of how to do this can be found via the link too. Places are strictly limited due to space restrictions so booking early is advisable. The venue is fully accessible but please do let us know of any specific requirements you have, if any, through the registration process.

@Scarecrow
 
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...and @Simon made an interesting response:
Repeated here:

Other speakers will include Prof Jo Nijs (autonomic system), Dr Øystein Fluge (Rituximab Trial), Prof Jim Horne (sleep), Prof George Davey Smith (big data, genomics, epigenetics and metabolomics).
Delighted to see Rituximab featuring at the CMRC conference, and even more pleased to see George Davey Smith is coming to the party. He's a really interesting thinker, and just the kind of scientist we need to bolster the field in the UK - a highly respected researcher.

Profile: George Davey Smith - insight (MRC)
George Davey Smith was away on unauthorised holiday cycling around Ireland when his counterparts at Cambridge medical school were taught about epidemiology.

Returning the day before the epidemiology module test, he received some limited instruction from friends in the pub, and then did better in the epidemiology test than in other parts of the course. “I realised this was something for me,” he says.
Plus more serious stuff, Professor George Davey Smith - School of Social and Community Medicine (Bristol University)

He's probably best-known for his work on "How our genes conduct radomised trials "


He co-authored and interesting 2007 article with Esther Crawley: Is chronic fatigue syndrome (CFS/ME) heritable in children, and if so, why does it matter? which I thought showed unusual clarity in this field, and even discussed problems of lack of correction when making many comparisions, a real problem with mecfs genetics studies.

@Bob replied:
Bob said:
That's interesting. And would probably explain Crawley's recent comments in the media re heritability, which surprised me: http://forums.phoenixrising.me/inde...fury-at-child-abuse-claims.38242/#post-610294
The best study quoted in that review was: A twin study of chronic fatigue.
A lot of twin studies use fairly-broadly defined chronic fatiuge, this study did a better job of diagnosis than most (though not perfect).

They used three definitions, and found that as they tightened the definition fromo chronic fatigue, to chronic fatigue with medical exlusions, then to chronic fatigue with medical AND psychiatric exclusions, the genetic component increased from 19% to 51%.
 

Research 1st

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IImagine a true ME collaborative in the UK, out of the hands of the BPS lobby and the selective grant money of the MRC:

Experts such as:

Kogelnik, Peterson,Cheney, Bell, Fluge/Mella, Montoya, De Meirleir, and new researchers. Imagine a time in science where no disease denial experts are in sight, academically sheltered under the wing of the UK's MRC or the frankly ludicrous USA IOM's: SEID = theoretical fatigue, not demostrated inflammation.

Immunuologists, Cardiologists, Neurologists, Rheumatologists could and should all come together researching genuine organically sick patients (using screening tests to demonstrate they are ill), and then BPS 'theory' of CFS can be shunned once and for all left for the minds of the hysterical to lap up.

That would be a true ME collaborative not one just in name easy to spin to the numbed general public who think 'ME research' equates to the promotion of a questionnaire results (market research), because you become an 'ME' researching by using the word ME, when the actual 'research', never ones analyzes patients with science of demonstrated organic disease. (F48.0 and Fukuda CFS criteria is clearly beneficial for CFS = ME).

Perhaps in 2018, we can learn that a 'subset' of CFS (genuine ME) have an autoimmune illness and simultaneously that talking therapy 'helps fatigue' (Not genuine ME). Ohh the irony it only took 40 years to start the first stages in ending political interference in non HIV AIDS promoted as 'fatigue' syndromes.
 

Dolphin

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Profile: George Davey Smith - insight (MRC)
George Davey Smith was away on unauthorised holiday cycling around Ireland when his counterparts at Cambridge medical school were taught about epidemiology.

Returning the day before the epidemiology module test, he received some limited instruction from friends in the pub, and then did better in the epidemiology test than in other parts of the course. “I realised this was something for me,” he says.
Plus more serious stuff, Professor George Davey Smith - School of Social and Community Medicine (Bristol University)

He's probably best-known for his work on "How our genes conduct radomised trials "


He co-authored and interesting 2007 article with Esther Crawley: Is chronic fatigue syndrome (CFS/ME) heritable in children, and if so, why does it matter? which I thought showed unusual clarity in this field, and even discussed problems of lack of correction when making many comparisions, a real problem with mecfs genetics studies.
George Davey Smith gave a talk at a meeting of biopsychosocialists, but it looks like what he said wasn't popular with some/many/most there.

Sample summary: http://www.meactionuk.org.uk/PROOF_POSITIVE.htm

PROOF POSITIVE?

Evidence of the deliberate creation via social constructionism of “psychosocial” illness by cult indoctrination of State agencies, and the impact of this on social and welfare policy

Eileen Marshall Margaret Williams 30th August 2005

[..]

The one dissenting voice at the conference was that of George Davey Smith, Professor of Clinical Epidemiology, Department of Social Medicine, University of Bristol, who in a presentation called “The biopsychosocial approach: a note of caution” carried the torch for intellectual integrity. His contribution showed that bias can generate spurious findings and that when interventional studies to examine the efficacy of a psychosocial approach have been used, the results have been disappointing.

To quote from Davey Smith’s contribution: “Over the past 50 years many psychosocial factors have been proposed and accepted as important aetiological agents for particular diseases and then they have quietly been dropped from consideration and discussion”. The illustrations he cited included cholera, pellagra, asthma and peptic ulcer. He went on to quote Susan Sontag’s well-known dictum: “Theories that diseases are caused by mental state and can be cured by willpower are always an index of how much is not understood about the physical basis of the disease” (Illness as a metaphor. New York: Random House; 1978).

Davey Smith’s reasoned warning to brought to mind the validity of Susan Haark’s chapter “Concern for Truth: What it means, Why it matters” in “The Flight from Science and Reason”. (Eds) Paul R Gross, Norman Levitt and Martin W Lewis (New York Academy of Sciences, 1996; pp57-63), which finds that those who know only their own side of a case know very little of that, and that “sham reasoning” attempts not to get to the truth, but to make a case for the truth of some proposition to which one is already committed, a familiar phenomenon in contemporary academic life. “Sham reasoning” in the form of research bought and paid for by bodies with an interest in its turning out in a desired way, or motivated by political conviction, and “fake reasoning”, in the form of ‘scholarship’ that is in reality self-promotion, are all too common. Could this possibly apply to members of One-Health company?

In the discussion that followed Davey Smith’s presentation, Wessely appeared to be apoplectic: “That was a powerful and uncomfortable paper. There will undoubtedly be many people, including those who one might call CFS activists, who would have loved every word you were saying. There is a popular and seductive view of medical history in which we move implicitly from unknown diseases which are thought to be psychiatric, and as we become better, brighter scientists, they are finally accepted in the pantheon of real diseases. You should remember that there is an opposite trend as well, which you didn’t mention”.

Davey Smith’s response was succinct: he believed there is a need to distinguish association from actual causation: “My main point was about disease aetiology. As a disease epidemiologist I want to get the right answers about this. In my view, susceptibility has been overplayed and exposure has been under-appreciated in social epidemiology”.

The distinguishing between association and causation is a key issue: Wessely’s confusion, especially in relation to ME/CFS, of association with causality is a criticism that has long been directed at him and he has been reminded again and again that correlation is not the same as causation, and that he should not over-interpret results as having more practical importance than those results warrant. To do so is not only methodologically flawed, but contributes to the continued mis-perception of the disorder.

Nevertheless, and perhaps unsurprisingly, Professor Sir Michael Marmot sprang to support Wessely: “I would emphasize Simon Wessely’s point. It is easy to look back and say, ‘Gosh, how silly they were in the past to think all these silly thoughts; aren’t we clever now!’. Research has advanced beyond the examples you cite because there have been many advances in conceptualisation and measurement of psychosocial factors”, to which Davey Smith replied: “We can get more robust evidence from observational studies, but these approaches have not really been utilized in the psychosocial field”.
Maxhead (presumably the same @Maxhead that's on Twitter) posted the full chapter of Davey Smith's talk online:
http://issuu.com/maxhead/docs/bps_caution_davey_smith