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It is also posted on the FB page Race to Solve ME/CFS which gets a lot of views.I really hope they do make it available internationally
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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.
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It is also posted on the FB page Race to Solve ME/CFS which gets a lot of views.I really hope they do make it available internationally
sent to bbc and itn............won't hold my breathCan someone send this to the BBC
And even to those media organisations who seem to have a vested interest ... in not being interested . Would you be interested BBC?maybe even license it to other TV stations that might want to broadcast it
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.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.
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.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
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.Wouldn't it be wonderful to get such quality TV coverage of the London international Invest in ME Conference?
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?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.
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.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.
Yes, such as the excellent update by BBC Look East last month, links to youtube here -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.