David Tuller tours Down Under!

Well worth watching the live stream of the Q and A with David Tuller although it was punctuated by problems with streaming.

Interesting to hear from David Tuller about how he became interested in ME and what keeps him motivated to keep advocating on our behalf.

In Australia, he plans to have meetings with politicians to lobby on our behalf and hopes to engage with mainstream media. He is also gathering material for future articles.

Grateful for his efforts on our behalf.

The Q and A:

I'm not able to put together a summary of the session but here are a few issues regarding questions from the audience:

I found the male doctor's assertions disturbing:

. That GPs are frequently faced with people suffering from fatigue.

(The implication being how can they be expected to know - it could be anything - when ME is clearly more than just fatigue - if only they took the trouble to inform themselves)

. That GPs are aware of and use the CCCs to diagnose ME/CFS.

(Most GPs in Australia aren't aware of the CCCs. This was supported by other viewers in their comments. I can't even get them to read hard copies of the International Consensus Primer when I hand it to them. And surely this assertion is at odds with point one above ie they don't know how to distinguish ME from fatigue)

. That GPs aren't taught anything about fatigue in medical school

(The implication being how can they be expected to know about ME? And their professional learning is frozen in time at that point? And at odds with point 2 above ie they are aware of and use the CCCs)

There was also another man at the end who was trying to find specks of gold dust in PACE. David Tuller dealt with this nicely.

Overall, I was impressed with David Tuller's grasp of the problems ME sufferers face, the science and the politics of ME and his ability to argue cogently and convincingly on our behalf.

Hopefully Emerge will post a full version of the session online.

I'd be interested in other people's comments on the session.

 

Oh yeah @Sean

 

As I saw it, it was another opportunity to get the message across about PACE; the problem of the name; that ME/CFS is about organic dysfunction not faulty cognition and so on; the use of Oxford criteria and the logical invalidity of any studies which use them; and the fact that "exercise intolerance" is the cardinal symptom, not fatigue, which I hope enlightened the doctor who said that the majority of patients go to the doctor complaining about fatigue which makes it difficult! It was good to hear him mention MUS critically as well. I thought it was an excellent job. I just hope it reaches the people that need to hear it.

I know absolutely nothing about Emerge but I had a strange experience this afternoon. Not long before the talk, I read a post on their facebook page by someone who said they thought Emerge should provide some info about David Tuller. It was written vaguely critically. I noticed the almost complete lack of info on their website too. I was able to quickly provide the MEPedia link, the virology blogs link and one other one that I've forgotten now. My user name screams that I am nothing to do with Emerge - just an obliging do-gooder! Soon after, the innocuous post and my reply were deleted. Very odd.

Edit: A friend just told me that if the original poster deletes a message on facebook, the replies go too. Maybe not so odd after all. I don't do facebook much!

 

I found the audio quality (and video but that's not so important) was too poor for me to watch. I may try again when I am not so far gone.

 

Which organisation is it that is organising David Tuller's tour. Is it The #MEAction Network Australia?

It is disappointing that there is still so little information available about public events. If enough notice isn't given it cannot be expected that turnouts will be large.

 

Details of public events in Queensland.

There are two confirmed events, and a possible third.

****************************
Friday April 20, 2pm-4pm.
This event is hosted by ME/CFS Australia Ltd.
Speakers:
Dr David Tuller (journalist and academic)
Dr John L Whiting (Infectious Disease specialist)
Kathy Dallest (pwME telling her journey)
Will include Q&A at the end.

Location:
Brisbane (Hamilton Town Hall, Racecourse Rd, Ascot). Venue is air-conditioned, and wheelchair accessible. Public transport is available, with a nearby bus stop. Some disabled car parking is available on site, as well as street parking. Light catering provided (including gluten and dairy-free).

****************************

Monday April 23 (time TBC)
Gold Coast, (Varsity Lakes - venue to be confirmed)
Program being finalised.
This event is hosted by Fibromyalgia and CFS Gold Coast Support group

****************************

There is also a possibility of an event in Toowomba event, subject to available dates

****************************

Details of how to book (free) tickets to these events will be made available soon.

 

Organisers have had very short notice to pull events together, as details of David’s trip were only confirmed very late. We are doing the best we can. We are all sick (or carers), and trying to organise a 6 week trip, with so little notice, has been a huge challenge for everyone. I understand the frustration of not getting more notice, and we are trying to get events confirmed as soon as possible.

 

Details of Sydney public event:

Sunday March 25: 1pm-3pm
Thai Pothong Restaurant function room
294 King St Newtown
http://www.thaipothong.com.au/newtown
This is a free event (plus optional lunch, with gluten and dairy free options). The venue is wheelchair accessible, and close to public transport (50 metres from Newtown Station and bus stops). Limited on- street parking.

***RSVP ASAP ****
Claudia Heath: ruthcrh@gmail.com
Sally James: sallykjames51@gmail.com

 

Is this Sunday March 25 or Friday March 23?

 

Sorry, typo. It’s Sunday March 25. I’ve edited the post. Thanks for picking that up!

 

Thanks for publicising this event. I am the organiser. We know this is very short notice but it was unavoidable. It will be David's only public event in Sydney and NSW.

 

David will be interviewed on ABC Radio Canberra at 10.10am (AEDT) (in about half an hour).

You can listen live via this link: http://www.abc.net.au/radio/canberra/live/

 

*** Free public lecture: University of Tasmania, College of Health and Medicine ***

“Chronic Fatigue Syndrome (aka ME) – Challenging the accepted dogma through research journalism”

Speaker: US journalist and academic, David Tuller

Date: Wednesday 4 April, 2018 (note the link below has Tues April 4. That date is incorrect and is in the process of being updated).
Time: 5.00 - 6.00pm
Location: Room 206, Level 2, Medical Science 1, 17 Liverpool Street, Hobart

No rsvp required

More information about this lecture:
http://collegeofhealthandmedicine.cmail20.com/t/ViewEmail/j/31F06A89CA1EE3E32540EF23F30FEDED

Note: this lecture is targeted at an academic audience, however members of the ME/CFS community are also welcome.

 

A bit of deja vu here @Simone. 4 April is a Wednesday, not Tuesday.

ETA: Sorry I see it's already being fixed.

 

Is there no longer going to be an event in Lismore NSW?

 

Actually hopefully there will be something in Lismore.

 

It is now possible to book tickets for the Brisbane event:

*** Free public event in Brisbane ***

“ME/CFS: What’s all the fuss about?”

Friday April 20, 2pm-4pm.
This event is hosted by ME/CFS Australia Ltd & ME/CFS/FM Support Assoc of Qld Inc
Speakers:
Dr David Tuller (journalist and academic)
Dr John L Whiting (Infectious Disease specialist)
Kathy Dallest (sharing her lived experience of the illness)
This event will include a Q&A at the end.

Seats are limited, so booking is essential. For more details and to book tickets:
https://www.eventbrite.com/e/mecfs-whats-all-the-fuss-about-tickets-44393854213

 

I’m not sure yet what’s happening in Lismore. David is still going to Lismore, but I don’t yet have details of what’s happening there. I’ll post details when I have them.

 

Audio recording of David’s meeting with members of the Sydney ME/CFS community is now available: