Journalist Primer: How to Report on ME/CFS (from MEAction)

I'm not sure how exactly our forum members might use this type of guideline, but I came across this recently and found it interesting.

Link to PDF file created by MEAction: Journalist Primer: How to Report on ME/CFS

 

Are there other conditions that have been in similar position who might have managed this sort of thing really well/produced significant change? Just be interesting to take a peek at the sort of thing they might have found works

 

is there an #MEAction UK version of this?
Although some of it would be tricky; eg
"DO talk to ME/CFS researchers and clinicians."
In the UK they are largely the ones putting out the misinformation.

 

Media markets and media cultures vary hugely from country to country. In the US, local TV and Radio has a far greater presence than in the UK, and while there has never been a large 'national' Newspaper market such as that in the UK, there has been a very strong body of quality journalism sustained by local and regional newspapers throughout the US, though newspapers sales have fallen by over half in the last 20 years: https://www.pewresearch.org/journalism/fact-sheet/newspapers/

Whether MEAction's US primer (UK term would be 'briefing) works in the US I wouldn't feel qualified to comment but it certainly couldn't be simply translated into a UK version for a number of reasons.

For the UK, the source references probably should be limited to NICE 2021 plus statements/guidance from patient organisations.

Some of the propositions in the MEAction primer seem difficult to sustain as settled science and using single study references suggest cherry picking to prove a point. And other than specialist health journalists, UK journos are unlikely to appreciate links to unpre-digested science. And I'm not sure that Dos and Don'ts would go down well in the UK and aremore likely to provoke a bloody minded response, at best it would get something on the line of "organisation x says we should describe ME/CFS as ....." rather than getting the journalist to moderate/modulate their writing.

Maybe US journalists like being instructed in terms of do/don't but I think for the hard nosed UK reporter it looks a bit 'woke'. A more impersonal Yes/No construct might be better.

I think one would really have to start from scratch and I'm not sure what value it might be given that most media contact in the UK is likely to be most effectively handled through MEA, AfME and ForwardME, each dealing with those aspects most relevant to the work they do.

Edit - removed a nonsensical link/claim