Tom Kindlon
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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Thanks I’m working on it but not hugely optimistic – CFS is viewed in mainstream press as one of those impossible areas- going in is intervening in a civil war – you probably can’t broker a deal and it is more trouble than it is worth
@Marky90, your fame spreads far and wide!A similar wild claim – that their critics had been making threats – collapsed under cross- questioning when a witness admitted that there hadn’t been any threats. The only specific example that emerged was that one of the authors of the PACE trial had been heckled at a seminar.
You're right of course, but it is amusing that that is all they can pull up. You'd think it was like Beruit or something the way they go on.Best not to heckle them in the future. Had that incident not happened, the ME/CFS community would have kept a clean sheet as far as 'harassment' goes (not that heckling is harassment but it's still something unpleasant that they can point to and exaggerate out of all proportion when it suits them).
Interesting comment from the author on trying to get a similar story published in the popular press:
Thanks I’m working on it but not hugely optimistic – CFS is viewed in mainstream press as one of those impossible areas- going in is intervening in a civil war – you probably can’t broker a deal and it is more trouble than it is worth
I thought newspapers loved reporting on controversial issues where their readers got involved in "the debate". Or is that only if Rod Liddle is doing the reporting?Interesting comment from the author on trying to get a similar story published in the popular press:
Yes, it's notable no-one's too worried about indulging his interventions.I thought newspapers loved reporting on controversial issues where their readers got involved in "the debate". Or is that only if Rod Liddle is doing the reporting?
I think one possible issue is that the pieces the journalists publish are often criticised by people in the ME community. Journalists don't necessarily like their work being criticised especially if they are not opinion-based journalist. Journalists can also often be freelance or not in secure positions.Interesting comment from the author on trying to get a similar story published in the popular press:
Thanks I’m working on it but not hugely optimistic – CFS is viewed in mainstream press as one of those impossible areas- going in is intervening in a civil war – you probably can’t broker a deal and it is more trouble than it is worth
It is good he is looking into this. However over the last two decades when I have opened the newspaper and turned on the TV the media has reported on Iraq, Iran, Syria, Rwanda, N Ireland, Israel, N Korea, Somalia, Egypt, Lebanon, Yemen, Ukraine, and they weren't afraid to report on these conflicts.
Is this issue worse than those??
Silly me - I thought the media reported on issues rather than being the United Nations and trying to broker a deal??
Something to keep in mind I think. Things like "ME also known as chronic fatigue syndrome" for example may not be worth strong criticism.
Yeah, to be fair it probably feels comparatively worse than most subjects in how closely and harshly it's scrutinised.I think one possible issue is that the pieces the journalists publish are often criticised by people in the ME community. Journalists don't necessarily like their work being criticised especially if they are not opinion-based journalist. Journalists can also often be freelance or not in secure positions.
Something to keep in mind I think. Things like "ME also known as chronic fatigue syndrome" for example may not be worth strong criticism.
Journalists might feel that no matter how hard they try, they will be criticised.
I know we can be a tough crowd, but aren't journalists these days used to criticism from trolls with an axe to grind on any issue they write about? Is there any evidence that readers with ME are any more vexatious than readers who feel involved / affected by any other controversial topic? Did readers in the UK politely refrain from commenting on Brexit articles before and after the in/out vote, lest they upset the journalists' sensibilities? Or did they nit-pick and troll away to their heart's content, without fear that the subject wouldn't be covered again if they didn't behave themselves?I think one possible issue is that the pieces the journalists publish are often criticised by people in the ME community. Journalists don't necessarily like their work being criticised especially if they are not opinion-based journalist. Journalists can also often be freelance or not in secure positions.
Something to keep in mind I think. Things like "ME also known as chronic fatigue syndrome" for example may not be worth strong criticism.
Journalists might feel that no matter how hard they try, they will be criticised.
To be fair, political journalists can't avoid writing about Brexit or Jeremy Corbyn, it's their primary job and they rarely stop whinging about the hassle they get on Twitter and the like. Health journos can quite easily duck out on ME and do so.I know we can be a tough crowd, but aren't journalists these days used to criticism from trolls with an axe to grind on any issue they write about? Is there any evidence that readers with ME are any more vexatious than readers who feel involved / affected by any other controversial topic? Did readers in the UK politely refrain from commenting on Brexit articles before and after the in/out vote, lest they upset the journalists' sensibilities? Or did they nit-pick and troll away to their heart's content, without fear that the subject wouldn't be covered again if they didn't behave themselves?
Hmph.To be fair, political journalists can't avoid writing about Brexit or Jeremy Corbyn, it's their primary job and they rarely stop whinging about the hassle they get on Twitter and the like. Health journos can quite easily duck out on ME and do so.
I think one possible issue is that the pieces the journalists publish are often criticised by people in the ME community.
Wasn't it Wessely who said he felt safer in Afghanistan than in the company of ME patients? Which slander, by the way, he ought to be forced to apologise for.It is good he is looking into this. However over the last two decades when I have opened the newspaper and turned on the TV the media has reported on Iraq, Iran, Syria, Rwanda, N Ireland, Israel, N Korea, Somalia, Egypt, Lebanon, Yemen, Ukraine, and they weren't afraid to report on these conflicts.
Is this issue worse than those??