UK CMRC 2018 Conference held September 19 & 20 at Bristol

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.

 

The cost involves paying a day delegate rate (in excess of £50) which is set by the hotel. I will certainly ask our contact there if a half-day rate would be possible, though it's too late to do this for this year's event.

 

This is shocking and telling.

 

https://twitter.com/user/status/1032190047699828741


as their logo is still included I assume a representative from the MRC will be attending?
If so, it would be good to get someone to talk about the PACE issue(?) particularly in light of AfMEs recent statement.
......actions speak louder than words.

 

Has anyone seen a schedule of the papers being presented?

 

possibly looking for cake..........

 

Are either/both of you going to this conference, @dave30th, @Jonathan Edwards?

Any thoughts on what looks interesting/rubbish on the programme?

 

Am I right in thinking there's no livestream this year? I can't remember seeing it mentioned.

 

Even recording it and posting it later would be good for those of us who can't go. I hope they'll do that, but I don't recall that being mentioned either (OTOH, I don't follow AfME's own social media).

 

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.

 

I'm planning to go but haven't really looked over the schedule yet.

 

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.

 

@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.