UK CMRC 2018 Conference held September 19 & 20 at Bristol

For me the IBS segment is unhelpful. It's always riled me right from the days Wessely decided IBS & CFS could be dumped as facets of the same functional syndrome. Continued by the likes of moss Morris who often put CFS and IBS in the same paragraph, the same category, with the same behavioural treatment. One a liveable with gut disturbance, one a potentially crippling systemic disease. Can we imagine- forgetting proven pathology- MS being put in with IBS. There might be a tiny overlap , yes people with CFS can have IBS and gut issues, as they can have allergies, medicine sensitivity, headaches etc but whether this lady sought out CMRC or was sought herself I personally am uneasy with continuing what seems to me a thread.

I will also make the suggestion that at the start of the conference a clip of some video footage, either unrest or action for MEs severe ME video be shown. Only 5 -10 minutes, obviously this is a conference, but as a lot of people still think of ME in fatigue terms I think it's vital ME is shown in suffering and impact terms.
 
Chris Ponting has made it clear to me that, unlike in previous years, I am welcome to attend. My presence last year obviously was not encouraged or desired! After sending another letter to the CMRC board last week to let them know about the open letter to The Lancet and BMJ's ongoing refusal to address the issues I'd previously raised with them, I received a nice note back from Holgate. He thanked me for the information and also encouraged me to attend. That was a surprise, but I appreciated hearing from him after our contentious exchanges last year.
 
dave30th said:
Chris Ponting has made it clear to me that, unlike in previous years, I am welcome to attend. My presence last year obviously was not encouraged or desired! After sending another letter to the CMRC board last week to let them know about the open letter to The Lancet and BMJ's ongoing refusal to address the issues I'd previously raised with them, I received a nice note back from Holgate. He thanked me for the information and also encouraged me to attend. That was a surprise, but I appreciated hearing from him after our contentious exchanges last year.
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Very pleased to hear that! Are you intending to go?
 
Some info from Margaret Williams which shows Prof Cathie Sudlow worked with MS in the past, I guess we don't know for sure what her views are though on ME now but.......


"AfME has announced that Professor Cathie Sudlow, now the holder of a personal chair in neurology at Edinburgh, is a conference speaker at the 2018 CFS ME Research Collaborative.

It may be recalled that when he held a personal chair in psychology at Edinburgh, in his Inaugural Lecture on 12th May 2005 entitled “The Science of the Art of Medicine”, Sharpe’s topics (taken directly from his own notes) included indicators of his intransigent beliefs about ME/CFS, for example:

“It is apparent that the attitude of patients suffering from this chronic state must be changed…”

“The knowledge that experience has shown that certain sensations have resulted from certain activities must be replaced by a conviction that these efforts may be made without harm”.

When in Edinburgh, Professor Sharpe was working on the Scottish Neurological Symptoms Study and his collaborators included (then Dr) Cathie Sudlow. This was a large scale study from which Sharpe leaked a computer file containing a confidential list of over 70 patients’ names and addresses which he sent to a member of the public, who unknowingly forwarded the information to other people.

Most of the named patients, some of whom live in sheltered accommodation, can be (and have been) identified.

Some of the confidential information consisted of personal statements made by patients (whose names and addresses were included) to a number of high-profile Professors and Consultants involved in the Scottish Neurological Symptoms Study, including Dr Cathie Sudlow.

Examples of the leaked confidential information about the study participants include the following comments:

“putting it on”; “mad”; “imagining symptoms”; “examination was a waste of time”;

The study from which the confidential data was leaked was looking at the prevalence of medically unexplained symptoms (MUS) in new patients attending Scottish Neurology clinics, particularly at “illness-related beliefs and behaviours”, which included patients with ME/CFS.

This serious breach of confidentiality by Professor Sharpe was reported by Ian Johnston in The Scotsman on 19th August 2005. The University of Edinburgh promised to launch an investigation; a spokeswoman said at the time that Professor Sharpe had been made aware of the situation but was on holiday. It seems that he was not censured in any way."
 
dave30th said:
Ha! Well I won't be holding my breath for that invitation!
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Probably wise.

But if the CMRC Board was smart and genuinely wanting to signal the start of a new era of UK researchers engaging constructively with people with ME, allocating you a presentation with a forward looking title* would be a very good way to do that. Then it's not them actively throwing their BPS colleagues under the bus, but the new rules of operation are made clear.

(e.g. a talk on things people with ME would like researchers to understand)
 
Hutan said:
But if the CMRC Board was smart and genuinely wanting to signal the start of a new era of UK researchers engaging constructively with people with ME, allocating you a presentation with a forward looking title* would be a very good way to do that.
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Actually, I see the point. But they probably would be nervous about the prospect I'd tear up more papers from distinguished BPS people! And it might be hard to say, We'd like you to talk as long as you don't tear up PACE or Esther's papers.
 
Adrian said:
I did wonder if we should submit an abstract for a poster? Perhaps on problems with subjective outcomes and why the CFQ should never be used!
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That's a good idea. There's the S4ME submission to the NIH (?) common data elements thing and it would be easy to add something on subjective outcomes.

Can posters be presented in absentia?
 
Adrian said:
I did wonder if we should submit an abstract for a poster? Perhaps on problems with subjective outcomes and why the CFQ should never be used!
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Sasha said:
That's a good idea. There's the S4ME submission to the NIH (?) common data elements thing and it would be easy to add something on subjective outcomes.
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Come to think of it, that might be best as two separate papers but I think that both are important points that deserve a standalone paper.
 
Sasha said:
Good to know!

Just stepping back and taking a wider view for a minute - what, as a science-oriented forum of patients, would we most want to say to a bunch of scientists looking into our condition?

(We're not necessarily limited to one thing.)
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I think one of the most useful things would be a more detailed documentation of ME. For example, the range of symptoms and how they fluctuate. I often feel that a few researchers get it but many don't but the detailed dynamics may hold a key or may need to be properly reflected in the research. Even things like managing visits to the doctor and rest before and after to be able to cope may be useful in enhancing understanding.

I wonder if we could do things like collect fitbit records as evidence if people had them and were willing to share. This would be a bigger project than anything we could do for an abstract here though.
 
Hi Clare at Action for M.E. here. I just wanted to offer a bit more information here, and to reiterate that everyone is welcome to come along (you don’t need to be a CMRC member). I’ll be there so would be happy to meet an for a coffee/chat over lunch on either day – just let me know (you can post here or email me).

The programme is signed-off by the Executive Board of the CMRC, and the organisation of the event is managed by the secretariat (ie. Action for M.E.).

Registration fees for people with M.E. and carers range from £50 for a single day’s conference pass to £250 (or £405 per shared room) for a two-day conference pass including drinks reception, delegates’ dinner and overnight accommodation. If your ticket does not include dinner on day one, but you wish to attend, please email Anna before Wednesday 5 September (additional places for dinner cannot be guaranteed after this date).

If you can’t attend in person, we aim to film each presentation to broadcast live and/or upload as a recording following the conference (with each speaker’s permission – some are presenting unpublished data and decline to be filmed, Details of livestreaming and/or filming will be made available nearer the time on our website.
 
Sasha said:
What about people who are only well enough to come for an hour or so?
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A single full day pass is the minimum available (the cost of which is substantially subsidised to make it affordable for people living with M.E. and their carers). For those too ill to attend for the whole day, we film it so it can be watched live and/or later. Last year, there were more than 6,000 views of the CMRC films on our YouTube channel!

I've not heard of conferences that facilitate delegate passes for a short time period, but would be really interested to learn more. Is it something you've come across before?
 
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