2017 CMRC Conference

[AndyPR]

Not recommending, just reporting.
Action for ME have announced initial details. This is the whole page quoted;

CMRC conference comes to Bristol - tickets available
April 25, 2017

Experts in neurovirology, imaging and orthostatic intolerance will take the lead for the fourth annual UK CFS/M.E. Research Collaborative (CMRC) conference, which will this year be held in Bristol on Wednesday 13 and Thursday 14 September.

Established in 2013, the CMRC aims to promote the highest quality of basic and applied evidence-based and peer-reviewed research into M.E. Action for M.E. has been an Executive Board member of the CMRC since its inception, and takes an active role in organising the conference.

This year’s conference focuses on the biology of M.E. and how researchers can work together collaboratively to further research it.

Dr Avindra Nath from The National Institutes of Health (NIH), which is based in the US, will talk about his work on neurovirology and infections of the nervous system. Blogging recently about the work of the NIH, its Director, Dr Francis Collins, explained that Dr Nath is leading “an extremely detailed and comprehensive evaluation of several dozen people with M.E./CFS, focusing on those whose symptoms can be clearly traced to an infectious-like illness and who have been sick for less than five years.”

Other presentations (titles TBC) include:

• imaging in research by Dr Matt Wall from Imanova, a translational research company that specialises in applying PET and MRI scanning techniques to improve drug development and health research
• pain and M.E. by Prof Maria Fitzgerald, University College London
• learning from other illness fields by Prof John Gallacher, Oxford University

Attending the conference

The two-day CMRC conference is open to professional and student researchers (undertaking a research associated programme at an academic institution). Associate Members – that’s anyone with an interest in M.E. who isn’t a researcher – can attend on the first day of the conference.

It’s free to become an Associate Member of the CMRC – visit our CRMC page to download an application form.

Registration for the 2017 CMRC conference for Associate Members is £45. As the CMRC does not receive enough income to cover costs, it has to ask for this contribution, which is heavily subsidised to enable access to the conference for people with M.E. If you are unable to meet the cost of the ticket but would still like to attend, please contact the CMRC (via Action for M.E.) to request a full/ partial waiver.

For those unable to attend, some presentations from both days will be livestreamed so that you can watch online at home.

https://www.actionforme.org.uk/news/cmrc-conference-comes-to-bristol-tickets-now-available/

 

[MEMum]

Professor John Gallacher -psychiatrist!

 

[MEMum]

Professor John Gallacher is the PI and Director of the MRC funded Dementia Platform UK (DPUK), Professor of Cognitive Health at the University of Oxford and Honorary Professor at Cardiff University. Gallacher is also PI for the Caerphilly Prospective Study and has developed the study’s focus on ageing and dementia. As member of the UK Biobank Steering Group, he leads on cognitive and psychological assessment. He is a visiting Professor to Imperial College London and Honorary Professor at the University of Hong Kong. He is Chair of the Avon Longitudinal Study of Parents and Children (ALSPAC) Scientific Advisory Board.

From vitaltransformation.com

 

[Yogi]

YAWN!!!!

Absolutely useless. Crawley and psychiatrist and AFME running it.

Waste of time and money.

 

[Valentijn]

Professor John Gallacher -psychiatrist!

Seems moderately inclined to psychobabble as well. A lot of his publications combine physical disease with mental health issues. Maybe a bit better than the usual quacks, in that he doesn't seem to avoid the "bio" in biopsychosocial. But perhaps more dangerous in that he twists the bio to support the psychological.

One example:

CONCLUSIONS & INFERENCES: The results of this observational study do not support the hypothesis that IBS or IBD have an intrinsic disease process that is associated with cognitive dysfunction. It is possible that concurrent mood disorders, in particular depression, may affect the cognitive performance of patients with IBD in specific tasks.

 

[Snowdrop]

10:10 MRC-funded researchers: updates on MRC-funded research Prof Carmine Pariante; Prof Esther Crawley; Prof Anne McArdle; Dr Mark Edwards; Sue Wilson

Esther Crawley presents on day two with the above.

 

[TiredSam]

Associate Members – that’s anyone with an interest in M.E. who isn’t a researcher – can attend on the first day of the conference.

Esther Crawley presents on day two with the above.

What a pity lesser mortals such as mere sufferers won't be able to attend to hear her words of wisdom (and perhaps ask for clarification) on day 2. Never mind, I'm sure there's a good reason for it, and that the professional researchers attending will ask all the appropriate questions on sufferers' behalf.

 

[BurnA]

What a pity lesser mortals such as mere sufferers won't be able to attend to hear her words of wisdom (and perhaps ask for clarification) on day 2

Maybe @Keith Geraghty will attend ?

 

[Somer]

Have other medical professionals ever held EC to account?

 

[slysaint]

Any representation from ME Association? @charles shepherd

eta: anyone know any able-bodied people who could hang around outside with a couple of
'Retract PACE' placards? Shame to miss the opportunity.

Also how does the timing tie in with the NICE guidelines review? Is this still happening this year?

 

[charles shepherd]

We are funding Professor Peter Rowe to come over from America to give a presentation at the conference

We are also funding four, possibly more, medical students to attend

The aren't any connections with NICE or the NICE guideline review

I haven't been in contact with Professor Mark Baker recently but will be writing to him to send him links to all the JHP commentaries on the PACE trial

My understanding is that NICE is still considering all the new information that might be relevant to a review taking place

As far as I know, there has not been any decision taken as to whether there will be a formal review of the 2007 NICE guideline on ME/CFS later in 2017

CS

 

[Large Donner]

Have other medical professionals ever held EC to account?

Yes a psychic medium, a medieval priest, a magician and an exorcist said that they all recognized her techniques but she just dismissed them as having Pervasive Refusal Syndrome.

 

[Snowdrop]

I've decided to post here on some idle musings I have as to the separation of church and state.

The way I see it. So long as C Shepherd/ME Assoc remain 'in the tent' there is the problem of continued legitimacy of the overall belief system of the (b)PS that is attached to ME. Even when there is dissent of opinion on the matter to those outside the CMRC only represent one view not a variety of views.

And these views are given legitimacy. Increasingly this legitimacy comes less and less from EC et al who are under some pressure to explain themselves but from the patient advocacy groups that are part of the CMRC and who by extension represent the voice of sufferers.

Every time an 'outside' source wants information to assess what is going on and to make decisions about ME they are handed AfME as a source. The latest being the Scottish Parliament. AfME has no legitimacy with many people with ME but the legitimacy is conferred because both they and MEA are 'in the tent' and so one is as good a source as the other. If people complain that no it's not we can look to the fact that both share a place in the CMRC.


I'm not at all sure I'm expressing myself well here. It's just that if MEA were to leave the tent and have the blessing of the patient community as the advocacy org that speaks for PwME there would be an alternative source for ME information that does not now really exist (in the context of the CMRC's reach). While MEA is in CMRC AfME will constantly be served up to any outsiders looking to acquire info on the subject. But if MEA left, AfME would be set adrift to be that patient charity that must either condone or explain their connection to Crawley and her actions and the church of (b)PS.

I really have a hard time believing that Crawley will not have the power to render MEGA a trial of her own desire. There has been no oversight in the PACE trial as the PI's did what they wanted to get the results they wanted. EC and George Davey-Smith have worked together before and he has shown no, none at all , zero interest in discovering anything about issues around ME . To me he is a puppet that knows there will be no big proper biological study maybe ever or at least until the 'good' part is first done and finished. The part that will be the structure that explains any results that follow.

AfME could then be the spokes org/mouthpiece of the CMRC and MEA the spokes org for the patient community thus having the both sides balanced reporting that media so like to claim.

 

[NelliePledge]

AfME could then be the spokes org/mouthpiece of the CMRC and MEA the spokes org for the patient community thus having the both sides balanced reporting that media so like to claim.

AFME would claim to still speak for patients - they still have members, unfortunately not everyone is engaged with the politics of ME, some people feel unable to engage due to challenges of brain fog, others are put off by the politics and some have been politically "captured" to a greater or lesser extent by the bps brigade through contact with IAPT or ME/CFS clinics

people continue to be diagnosed with ME/CFS in the UK I was diagnosed in October 2015 and when you're newly diagnosed youre logically going to seek information from theNHS website which points you to AFME and MEA - initially I got a lot of info from AFME mainly because their info is free to download and MEA info is available at a charge. by reading the patient surveys I realised there were issues with CBT and GET, by which time Id already done the IAPT CBT sausage machine.

 

[daisybell]

I think that's a very interesting point- @charles shepherd - that newly diagnosed people are turning to AFME because they can download info for free...
Of course the MEA needs to cover costs, but is there any way that more resources could be freely available? This might help to sway the membership figures? I think that joint the MEA for the purple booklet is a very reasonable ask, but if folk could get at least the basic leaflets for nothing that might pursuade them to stick with the MEA.
There must be some options for grants for leaflet printing costs...

I'm the trustee of a charity in NZ and I know that we can get all our leaflets funded through grants.

 

[Snowdrop]

AFME would claim to still speak for patients

Yes of course they will. It's not perfect. Nothing is. But there is a fair bit of momentum to show that a lot of patients do not like or trust the CMRC and that they see AfME as aiding and abetting this group who really do not have the trust of people with ME.

As for new people it's a matter of their being offered information about this whole business to allow them to draw conclusions on their own. As time goes on I think that those numbers will grow not decline. I don't see that as a reason to not consider what I gave thought to. AfME is never going to have no support.

But I think things could go better/differently if the separation was made and efforts to let the media and others be educated as to how many patients feel with regard to EC and anyone who supports her views.

EC is an actual patient hater (I think she hates more broadly but different topic) I personally see it as really hard to justify working with her. My support for that statement is the slides she used that were posted here on PR from a recent conference.

 

[NelliePledge]

I'm only talking of my own recently diagnosed experience of finding my way round different sources of info can't speak for others. Similar thing with PR I found this forum off putting for the first 12 months after diagnosis. It is maybe ok for folks who have more of a science background but I didn't understand the science or the politics and some of the debate comes over as pretty challenging and not particularly supportive. A lot of what feels like the ME equivalent of mansplaining

Now I'm ok on the politics find the science pretty baffling still always looking for well written blogs about research papers rather than tying to understand threads her. and sometimes I feel the interactions get a bit unnecessarily snappy but that's maybe a middle class English thing of wanting everyone to play nicely

 

[NelliePledge]

I think in some way the best hope that MEA would step away from CMRC is that they continue to find difficulty securing funding. If they do get any success with funding I still feel I would want MEA in there to not leave the others carte blanche.

But I also agree EC involvement is a big credibility problem with probably 99.9% of engaged ME patients. quite a big % in wider community wouldn't have a scooby doo who she is unfortunately. So we all need to spread the word in local groups and other forums through posting David Tullers blogs so they can find out how she portrays us maybe this will hook more people into being more engaged with the politics.

 

[Snowdrop]

I'm only talking of my own recently diagnosed experience of finding my way round different sources of info can't speak for others. Similar thing with PR I found this forum off putting for the first 12 months after diagnosis. It is maybe ok for folks who have more of a science background but I didn't understand the science or the politics and some of the debate comes over as pretty challenging and not particularly supportive. A lot of what feels like the ME equivalent of mansplaining

Now I'm ok on the politics find the science pretty baffling still always looking for well written blogs about research papers rather than tying to understand threads her. and sometimes I feel the interactions get a bit unnecessarily snappy but that's maybe a middle class English thing of wanting everyone to play nicely

Another explanation for what might come across as snappish is that there are ever so many people here who have been very ill and for decades.
It can wear you down. Permanent exhaustion can tend to make people just get to the point with no energy left to spare. This is the only theatre for engagement of the issues of ME for some people and as the only outlet with few interactions it can become a bit focussed perhaps.
What seems rude might just be a lack of energy to think in terms of how to make what they say softer or more palatable.

I think that there can be a lot of support here for many of the things we experience. But for those who have been in this position (being ill) for a long time it's hard to discuss the political environment of harm without some emotion. Being ill for a long time is draining. I think for the most part people behave quite well.

 

[Snowdrop]

I think in some way the best hope that MEA would step away from CMRC is that they continue to find difficulty securing funding. If they do get any success with funding I still feel I would want MEA in there to not leave the others carte blanche.

For me the problem is that I have trouble seeing how they do not already have 'carte blanche' even with MEA in the tent.
What would be lost if MEA left?

For me the answer is CMRC's legitimacy.