David Tuller - Discusses M.E./C.F.S and the UK Medical Establishment. 19 Oct 2019

OMEGA, Oxfordshire M.E. Group

Date And Time
Sat, 19 October 2019
14:00 – 16:00 BST


Location
Jury’s Inn
Wolvercote
Oxford
OX2 8AL

https://www.eventbrite.co.uk/e/davi...-uk-medical-establishment-tickets-70094886693

 

@John Mac
Do you know whether the group will manage to find a healthy volunteer who can either film or live tweet during the event please?

Congratulations to the group for such an interesting event!

 

Unfortunately I only know what was in the original post. I'm not a member of OMEGA so the question would have to be directed at them.

 

Yes, it will be filmed.

The event is free, but anyone wishing to attend needs to sign up through Eventbrite, thanks

Priscilla, OMEGA chair

 

My wife and I have registered, we're looking forward to it. Thanks for organising it.

 

Thank you. I would have loved to have come (neighbouring County and could just about have managed that with my driver ) but my diary already tells me “No!”, so I look forward to watching the recording.

 

Signed up. And have a ride organised. Yeh!

 

Mr B and I have registered and hope to be there. Will be at my limit, about an hour and a quarter by car driven by Mr B, so fingers crossed there is no pem or other appointments around beforehand or that will destroy the plan.

Have booked hotel room so I can rest during the talk( if necessary) and afterwards. Hope at least to say hello to any S4MEers.

I have a hospital appointment in London this afternoon, also allowing about an hour and a half in travel, although it may be quicker- just don’t want to be late. Have been resting since Thursday so as to be able to get there. It is so frustrating to have to keep a week clear for one appointment. But at least I can get out occasionally even if it’s mostly medical appointments.

Thank you @2kidswithME for organising the event. Am looking forward to it. Will there be any room for leg elevation during the talk? I do so much better when semireclining.

 

Ohhh, was considering travelling from Liverpool for this... But OH checked his diary and has booked journey and is going to London on a bus to demonstrate (I'm sure you can make a wild guess as to what this demo is about!) on this particular Saturday. I do hope that @dave30th might be doing more talks in UK? Want to shake his hand and thank him for all he does to help us!

 

There is a ‘breakout ‘ room adjacent to the lecture room to give rest space but still hear, also plan to have the lighting dimmed. In the main room it will be rows of chairs, as we do need to fit people in, but we will leave some space for wheelchairs. Walking distance is relatively short. Venue has been very helpful.

Priscilla

 

Thanks @2kidswithME. That sounds good. If necessary I can sit on a chair with my legs up on my wheelchair if there is room. I sat like that this afternoon- wheelchair seat for legs is more comfortable than a hard chair.

 

Sadly too great a distance for me, but I will be sure to catch the filmed version when available.
Many thanks @dave30th for keeping up pressure for change.

 

https://twitter.com/user/status/1178667721988481025

 

Anyone who comes, please come up and introduce yourself! I'm also talking in Newry, N.Ireland, on Nov 5th. But if other groups want me to come and talk locally, I'd be happy to do other events on my next trip. I am always looking for reasons to leave Trump-landia for a while.

 

I am coming too - look forward to meeting you all, maybe we should all wear something so we know we are S4MEers!

 

Does anyone who was there feel up to letting the rest of us know how it went?

 

I wasn't there but I had a sandwich lunch with David on Friday and provided him with an A4 copy of the SMILE trial for him to tear up on Saturday.

 

Sounds promising.

 

As an attendee, I'd say OMEGA, https://omegaoxon.org/, ran a well organised event.

For the first hour, David entertained us all with an engaging description of his investigations into Crawley's SMILE trial , and his subsequent attempts to get the issues with it addressed by the UK establishment. Nothing new for anybody following David's blogs on the matter and our discussion threads on the topic but eye opening, I'm sure, for those who weren't aware of it. And rounded off by David's academic performance art, ripping up the copy of the SMILE trial mentioned above.

A drinks/comfort break followed, which I suspect also gave a chance for David's frustration (at his inability to get the study retracted) levels to reduce somewhat. The afternoon was rounded off with a Q&A session.

There were a number of non-patients in the audience but I wouldn't like to identify those I recognised in case they wouldn't want their attendance highlighted. Afterwards, I also found myself part of what will probably be a very useful conversation for future advocacy efforts but again I wouldn't want to reveal those involved.

 

Oh, and I forgot to say, I was lucky enough to meet a couple of forum members in person, so hello again to @Sbag and @Nellie