UK CMRC 2018 Conference held September 19 & 20 at Bristol

Action for M.E. said:
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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Thanks for your reply. I don't recall seeing this for academic conferences but I have seen it for other events where it's possible to buy a ticket to hear a single speaker's presentation.

Academic conferences have understandably been aimed at academics/researchers (i.e. people well enough to be in work and therefore well enough to attend the whole event) but I think it would be good if people could start thinking outside of that tradition if there's real interest in enabling patients with ME to attend these events.
 
@Action for M.E. - even a half-day pass would be a step forward, and possibly easier for you to administer - but please bear in mind that even £25 will be a lot of money for a patient/carer. Many of us have been unable to work for years and live on benefits.

You say that the £50 day-rate for patients/carers is 'heavily subsidised' but can you explain to me what it costs to have us there, other than a couple of quid per person to cover the cost of refreshments?

The event will run with or without patients/carers, so unless you're having to hire a bigger hall to accommodate us, I can't see why you need to make such a high charge.
 
Daisymay said:
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."
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This is shocking and telling.
 
Interesting the oral presentation from Tiffany Lodge about factors in serum that might be influencing cell metabolism- is this picking up on Ron Davis comments about is something in the serum? (Sorry if title is garbled doing from memory as only on my phone)

Also good to see session by Dr with MEabout medical education

Not sure about the MRC funded stuff. But generally it looks to have moved on in line with new approach.
 
Para below is from AfME website:

"With speakers’ permission, each presentation during the conference will be filmed and free to watch on our YouTube channel, following the event. However, please note that, due to the presentation of unpublished data, some speakers decline to be filmed. Last year’s presentations from speakers, including Professor José Monyota, have been viewed nearly 10,000 times, and are still available to view."

So presumably those speakers who
  • are not presenting new data they hope to publish, or
  • don't mind those militant, patient activists harassing them,
will be happy to have their talks shown later on You Tube.
 
A few things look questionable to me:

I don't trust Pariante and he gets two slots. It seems to me that he's trying to introduce beliefs through the back door. Inflammation, but one that can be treated with CBT.

I don't like the attempt to link FM, IBS and ME. That looks very dodgy to me.

The Yorkshire Fatigue Clinic looks like packaged-up GET to me. It seems also to be a private clinic, so I have two big question marks alongside that.


ETA: 'to big question marks' to 'two big question marks'.
 
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Oral Abstract Presentation:
Alterations of cellular metabolism observed in muscle cells, indicating possible factors present in plasma of patients with ME/CFS capable of modifying cell function.
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By Tiffany Lodge. This is very interesting. Edited: Lodge is with Karl Morten's group, so there are now 3 or 4 groups talking about something in the serum that's impairing cell function.
 
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@JohnTheJack - just to reassure you that the Yorkshire Fatigue Clinic are pretty unique in the UK in the fact that they don’t ever push GET. In fact they largely disagree with it and how it has been delivered by mainstream NHS clinics. I think this is why they set up an independent private clinic in my humble opinion.

I’ve been a patient of them for two years and they’ve been very supportive from an occupational therapy point of view. They actually forced me to stop pushing against my symptoms in the early days when I didn’t understand the illness and have reassured me constantly during my worse months being bed bound and hardly able to make it to the bathroom.

I know the title looks ambiguous but I’m hoping it’s focused more so on pacing/activity management. They’re well informed with the biomedical research and are worlds apart from my digustingly ignorant and barbaric local NHS clinic.
 
jaded said:
@JohnTheJack - just to reassure you that the Yorkshire Fatigue Clinic are pretty unique in the UK in the fact that they don’t ever push GET. In fact they largely disagree with it and how it has been delivered by mainstream NHS clinics. I think this is why they set up an independent private clinic in my humble opinion.

I’ve been a patient of them for two years and they’ve been very supportive from an occupational therapy point of view. They actually forced me to stop pushing against my symptoms in the early days when I didn’t understand the illness and have reassured me constantly during my worse months being bed bound and hardly able to make it to the bathroom.

I know the title looks ambiguous but I’m hoping it’s focused more so on pacing/activity management. They’re well informed with the biomedical research and are worlds apart from my digustingly ignorant and barbaric local NHS clinic.
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Right, OK, thanks. Sometimes I get a bit overly suspicious.
 
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