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Feature on ME from South-Africa with among others Davis & Tuller

TiredSam

TiredSam

The wise nematode hibernates
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2,677
Location
Germany
TrixieStix said:
This video is exactly what I've been hoping for! This video is the perfect vehicle to send to family and friends to explain why I have disappeared from their lives and how/why this disease has affected my life so profoundly. Grateful to the OP for sharing.
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It does seem to be - this time around instead of the silence I got with Jen Brea's video, without any prompting both my sisters have re-shared the video and I've just had an email from an old friend I haven't spoken to for a few years saying he saw the video and am I ok? 28k views so far.
 
slysaint

slysaint

Senior Member
Messages
2,125
C

char47

Senior Member
Messages
151
Well it's a really good piece, especially considering its from a mainstream/respected programme. And huge thanks to them for doing it and to the patients in the piece - (very courageous well done!).

But for me it would have been even better if they'd mentioned that not only patients but many reputable & highly respected scientists & doctors worldwide have called for retraction of PACE. Because i feel it unfortunately perpetuates the myth that it's a case of patients (& their advocates) vs doctors/scientists.... ie that patients were the ones who pointed out what they see as being wrong with PACE, & went into ''revolt''.
I mean i know we are in revolt, but it just allows that revolt to be viewed (by those that would choose to/are ignorant) as a case of patients simply not liking the evidence/truth. - The tune wessely/white/sharpe/chalder et al have been singing for decades.

Sorry to bring a note of negativity to what is otherwise a great piece & it may seem like I'm nitpicking....
but although it's a seemingly small thing, I think it's important, because mental health patients often dont like their treatment & resist it (- eg a paranoid schizophrenic).
So there is a real danger of that whole ludicrous & patronising narrative of ''ME patients dont know what's good for them'' being allowed to discredit excellent journalism like this report.

(just to clarify - i'm obviously not saying ME is a mental illness - only that when the situation is presented in a way that it appears as if it's a 'Drs/science versus Patients' situation, it makes it easy for those who say ME IS a mental illness, to dismiss & discredit the report. which would be a terrible shame.

Edited to add - I thought the patient called Natalie did an amazing job of explaining in a succinct way.
 
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slysaint

slysaint

Senior Member
Messages
2,125
char47 said:
But for me it would have been even better if they'd mentioned that not only patients but many reputable & highly respected scientists & doctors worldwide have called for retraction of PACE
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The fact that they even brought up PACE (and in a negative light) and got Tuller to explain the detrimental global impact is a big step forward............the UK media, so far, haven't dared be so up front.
A real PACE expose would be great. Hopefully if enough people watch this video it might encourage other journalists to look a bit deeper.
 
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Jo Best

Jo Best

Senior Member
Messages
1,032
Wouldn't it be wonderful to get such quality TV coverage of the London international Invest in ME Conference? Just imagine - with all the major players there from around the world - it's of global interest - e.g. David Tuller and Ron Davis as featured in the superb Carte Blanche piece - along with everyone involved in the public conference and the closed workshops - NIH, CDC, Norwegian Health Directorate, all represented this year... and the location, Westminster, given that the protagonsists of the PACE trial and BPS model are based in UK.. http://investinme.eu/IIMEC12-news.shtml
 
A

AndyPR

Senior Member
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2,516
Location
Guiding the lifeboats to safer waters.
TiredSam said:
Yes it would. Unfortunately such reporting only seems possible if it takes place beyond the clutches of the SMC, which means outside the UK or on regional TV or radio within the UK.
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There's a thought. Could there not be an argument then to hold next year's IiME conference (assuming there will be one) in Norwich then? Local and regional press surely would love to cover something like that, especially if there was a "used to be held in London but now shows Norwich more important" flavour to the story. I can appreciate logistics may favour London but a better chance of more media coverage may make it worthwhile?

ETA. That is more aimed at Jo but replying to the post that inspired the thought. :)
 
Jo Best

Jo Best

Senior Member
Messages
1,032
AndyPR said:
There's a thought. Could there not be an argument then to hold next year's IiME conference (assuming there will be one) in Norwich then? Local and regional press surely would love to cover something like that, especially if there was a "used to be held in London but now shows Norwich more important" flavour to the story. I can appreciate logistics may favour London but a better chance of more media coverage may make it worthwhile?

ETA. That is more aimed at Jo but replying to the post that inspired the thought. :)
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I think it's held in Westminster for easy access by the UK powers-that-be and that it sends a message to UK government and the relevant public-funded bodies that is being heard and heeded in the corridors of power. I think you're right also from a logistical angle that London is easier for people to travel to from across the world. Another point is that, while Norwich is the hub of the Invest in ME Research Centre of Excellence for ME because of the unique combination of resources at the science park, it is of national and international importance and includes London-based researchers.
 
Jo Best

Jo Best

Senior Member
Messages
1,032
TiredSam said:
Yes it would. Unfortunately such reporting only seems possible if it takes place beyond the clutches of the SMC, which means outside the UK or on regional TV or radio within the UK.
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Yes, such as the excellent update by BBC Look East last month, links to youtube here -
http://www.investinme.org/IIME-Newslet-1701-02.shtml

This is by one of the BBC Look East presenters, Susie Fowler-Watts -
via Kate.jpg
 
slysaint

slysaint

Senior Member
Messages
2,125
Video on FB 52K views (1,000 views a day)
https://www.facebook.com/NathalieHWilliams/videos/10156004031092619/

keep sharing.............(maybe with the link to Jen Breas Tedtalk?)and or Voices from the shadows
maybe send to your MP?
how can we get it into the medical community?

eta: obviously possibly not a good move to send to your own GP, BUT what if we did some kind of "swaps", ie send it to someone elses GP and they send it to yours? Just a thought.
 
slysaint

slysaint

Senior Member
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views 53840
@natwillza
I have seen a few carte blanche pieces on Youtube. Any news on when/if this vid will be available either on their website or on Youtube?
 
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