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

John Mac

John Mac

Senior Member (Voting Rights)
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

David Tuller is a senior fellow in public health and journalism at the Center for Global Public Health, an arm of the School of Public Health at the University of California, Berkeley. He was a reporter and editor at The San Francisco Chronicle and has been a frequent contributor to The New York Times and many other publications.

For the last several years, he has investigated the seriously flawed research, much of it from the UK, into the illness or cluster of illnesses variously known as ME, CFS, ME/CFS and CFS/ME, among other names. His work has helped trigger international concern about the conduct and reporting on research in this domain of inquiry.

In this talk he will discuss his latest activities, findings and thoughts about the UK medical establishment, how ME/CFS and MUPS* patients are treated/mistreated and explore the reasons why.
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https://www.eventbrite.co.uk/e/davi...-uk-medical-establishment-tickets-70094886693
 
2kidswithME said:
Yes, it will be filmed.

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

Priscilla, OMEGA chair
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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.
 
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. :cry: 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
 
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.
 
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. :ninja:
 
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