Jo Best
Senior Member
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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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I'm sure they have over the years, but mainstream media in UK is guided by the Science Media Centre which doesn't favour biomedical research. Last year, journalist Conrad Bower published a report on the conference The Canary:Have TV and newspapers been alerted to this event and its significance?
I'm sure they have over the years, but mainstream media in UK is guided by the Science Media Centre which doesn't favour biomedical research. Last year, journalist Conrad Bower published a report on the conference The Canary:
https://www.thecanary.co/2016/06/08/people-mecfs-long-told-head-scientists-disagree/
There was an interview with a BBC reporter yesterday, so it will be interesting to see if it's aired/published.
(Smoke and Mirrors Centre ) Yes and even if the reporter is on side, the next hurdle is whether their piece will pass editorial approval and be aired/published. We can but try I guess. I thought the January 2017 regional BBC TV coverage was good: http://www.investinme.org/IIME-Newslet-1701-02.shtmlI'm very well aware of the role of the Smoke & Mirrors Centre, but we are surely going to have to try to counter that by making our own contact with the media direct. I do hope the BBC reporter will think outside the Beeb's usual box.
So they're proposing that Suramin might be administered once and could last a long time, but obviously has to be tested.
@Ysabelle-S did you mean to post on the conference thread? http://forums.phoenixrising.me/index.php?threads/invest-in-me-conference-june-2nd-2017.51888/
Thanks you saved me a job as I was going to pick up this morning on the Twitter feed #IIMEC12 where I left off last night reposting tweets on the conference thread.Yes, probably, lol. If no one else has posted this already, I can post these in order over there.
With four days and evenings of events the charity has now facilitated another set of meetings which have broadened and bolstered the foundations of international biomedical research into ME which have been laid for the last twelve years.
The two day Colloquium, now in its seventh year, has researchers from the main centres around the world discussing, sharing, innovating, collaborating on research into this disease which will help all patients and their families around the world.
The Colloquiums are unique and we are confident that this model is the correct one for continuing to make rapid progress in order to find the cause(s) of ME.
The atmosphere this year was especially good and we already know of potential collaborations in research which are forming or have formed.
We are working on a report from the Colloquium which we hope to make available for all.
BBC Colloquium Interview Arranged by IiMER
IiMER were responsible for facilitating interviews by the BBC for an upcoming radio programme about ME.
After being contacted by the BBC journalist for a programme which seemed to be already in an advanced stage of preparation we attempted to provide more substance by using the scientific knowledge present at our Colloquim.
IiMER prepared these interviews by selecting a good cross section of scientists, rearchers, clinicians and a parent of severely affected children with ME. And so interviews were conducted, at very short notice, during lunch on day 2 of the Colloquium - and more interviews followed the next day with Nigel Speight and David Tuller at our Conference, at our invitation to t he reporter.