• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

James Coyne to talk in Edinburgh Monday 16 Nov 2015 7pm

Esther12

Esther12

Senior Member
Messages
13,774
Scarecrow said:
Unfortunately, one of the audience member's anger and grievances got the better of him, which caused things to get sidetracked and ultimately JC wasn't able to finish.
Click to expand...

Bit of a shame. I understand people's upset, but if things do start turning around, this could be an emotional time for a lot of us. We should do what we can to prepare for this and ensure that these responses don't get in the way of us being able to actually achieve real improvements.
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Large Donner said:
Can you say anymore about this yet?
Click to expand...
Yes, I'm back in the virtual world again and on my laptop. :)
Esther12 said:
Bit of a shame. I understand people's upset, but if things do start turning around, this could be an emotional time for a lot of us. We should do what we can to prepare for this and ensure that these responses don't get in the way of us being able to actually achieve real improvements.
Click to expand...
Esther, you've more or less pre-empted what I wanted to say.

It is so important that Coyne gets his message out in as many formats as possible. Angry patients compromise that message no matter how justified their anger. I was wincing through some of it because it sounded like Coyne was the one being shouted at, though he was very good natured.

Going off on a rant is disrespectful to Coyne and to the other people that have turned up to hear him and it's such a turnoff, particularly to people who don't have ME. A couple of people walked out and I know for certain that at least one of them was not a patient.

We just have to be so careful to control ourselves and accept that we are going to be held to a higher standard of behaviour. By the end of this whole process, if we are going to be criticised for anything, I'd far rather it be that we are emotionless robots!
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I'm uploading part 1 of the talk on Youtube. It's going to take about ten hours a bit longer than that.

http://forums.phoenixrising.me/inde...nday-16-nov-2015-7pm.41045/page-7#post-666356

I did a separate audio recording but the one on the video is pretty good quality. So in the interests of speed that's going up first.

I'll get the better sound up eventually but I've never videoed or edited anything before so I have a lot of figuring out to do. If anyone can offer me tips, please start up a PM. Thanks.
 
Last edited:
Large Donner

Large Donner

Senior Member
Messages
866
I'm still not sure what exactly happened. Did someone start ranting at Coyne in the middle of the talk? What exactly did they say? How well informed was this person? Was it a patient? Could the person have been a plant? How long did they go on for?
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Large Donner said:
I'm still not sure what exactly happened. Did someone start ranting at Coyne in the middle of the talk? What exactly did they say? How well informed was this person? Was it a patient? Could the person have been a plant? How long did they go on for?
Click to expand...
No, sorry for not being clear. It wasn't at Coyne. Not a plant. And far too long.

All I'll say is that the person had their own agenda and quite cynically took advantage of the talk being recorded. A lot of members at PR would have sympathy with the persons points but it wasn't the place to make them. He didn't allow Coyne to speak for trying to have a dialogue with him. Bad form.
 
Esther12

Esther12

Senior Member
Messages
13,774
Scarecrow said:
All I'll say is that the person had their own agenda and quite cynically took advantage of the talk being recorded. A lot of members at PR would have sympathy with the persons points but it wasn't the place to make them. He didn't allow Coyne to speak for trying to have a dialogue with him. Bad form.
Click to expand...

That's more annoying that someone just getting carried away in the moment.
 
D

Dolphin

Senior Member
Messages
17,567
Scarecrow said:
I'm uploading part 1 of the talk on Youtube. It's going to take about ten hours.


I did a separate audio recording but the one on the video is pretty good quality. So in the interests of speed that's going up first.

I'll get the better sound up eventually but I've never videoed or edited anything before so I have a lot of figuring out to do. If anyone can offer me tips, please start up a PM. Thanks.
Click to expand...
I'm getting:

We're processing this video. Check back later.
Click to expand...
 
nasim marie jafry

nasim marie jafry

Senior Member
Messages
129
Scarecrow said:
No, sorry for not being clear. It wasn't at Coyne. Not a plant. And far too long.

All I'll say is that the person had their own agenda and quite cynically took advantage of the talk being recorded. A lot of members at PR would have sympathy with the persons points but it wasn't the place to make them. He didn't allow Coyne to speak for trying to have a dialogue with him. Bad form.
Click to expand...

Was good to meet you, @Scarecrow - good luck with editing video/audio - I have less than zero knowledge of these things, I'm sorry not to be able to offer help. I don't think the 'angry' man has ME, he was sitting next to me and he was agitated, for sure, but he did also at one point apologise - perhaps too quietly to be heard by others - to James, saying he gets very upset at the plight of disabled/sick in current climate (which of course also affects many pwME, this harmful emphasis on biopsychosocial model). I have such a terrible memory I don't recall his name, he did introduce himself. Yes, I think he perhaps was using the PACE event to get on film, but I really hope all turned out amicably. I think James Coyne rocks and he seemed take all in his stride, but I left before end so not sure how events turned out.
 
Last edited:
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
nasim marie jafry said:
Was good to meet you, @Scarecrow
Click to expand...
Good to meet you, too.

It wasn't clear to me whether or not our angry man also has ME but I know that he is a disabled activist and he obviously has a reasonable knowledge of events. I really don't want to say more because I don't want to identify him. It wouldn't be fair.

Forum members put a lot of work into that event behind the scenes and there were many people looking forward to seeing the talk online. By10:30 this morning, there had been 1500 views of the slides which just shows the level of interest. If we could have put a full talk online, it would have been worth putting the effort into publicising it and it would have been yet another way of putting the pressure on PACE. As it is, I'm sure that it will be still be of interest to people but it has lost its power as an advocacy tool. If people in the room were shifting in their seats and rolling their eyes - and in some cases leaving - they are going to be even less inclined to watch it online.

Getting shouty is a great way of venting frustrations but it really isn't a great way to influence people.

Hoping @Valentijn may be able to persuade someone to record the talk in the Netherlands in January, if it happens.
 
Last edited:
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Scarecrow said:
Forum members put a lot of work into that event behind the scenes and there were many people looking forward to seeing the talk online. By10:30 this morning, there had been 1500 views of the slides which just shows the level of interest. If we could have put a full talk online, it would have been worth putting the effort into publicising it and it would have been yet another way of putting the pressure on PACE. As it is, I'm sure that it will be still be of interest to people but it has lost its power as an advocacy tool. If people in the room were shifting in their seats and rolling their eyes - and in some cases leaving - they are going to be even less inclined to watch it online.

Getting shouty is a great way of venting frustrations but it really isn't a great way to influence people.
Click to expand...

I'd been looking forward to this tremendously since it was announced and I'm so very disappointed that some people don't seem to have been able to think of the needs of other patients (and of James Coyne himself) and keep themselves under better control. It really would have been a fantastic advocacy tool. I would love proponents of PACE - or, especially, neutral parties who would have been ready to come onside - to have watched the video. Imagine all those NHS specialists watching it!
 
Esther12

Esther12

Senior Member
Messages
13,774
Scarecrow said:
I've downgraded myself to moron. The upload has frozen. Sorry everyone.

I'm currently converting the files to mp4, which will run overnight, and hopefully I'll have better luck tomorrow when I upload.
Click to expand...

I feel for you. A decade of abnormal sickness behaviour means lots of 'normal' modern activities ("upload a video to youtube? Can anyone do that now?") can seem quite bewildering.
 
You must log in or register to reply here.