Question

I appreciate all the work that you are doing in getting stories about ME (and Long COVID) into the media. But please could you do something about the headlines and photographs that are used to accompany these items, and some of ’the facts’ about ME that are often boxed into these items. For example, the BBC news item that I’ve just been watching on the overlap with Long COVID has a slide covering common ME symptoms – the top one being ‘extreme tiredness’. This is not helping to educate the public about ME!

Answer

You raise three very valid points and there are no easy answers. When I started helping health journalists with items about ME/CFS thirty years ago everything was conducted at a much slower pace. I was often asked to check the written copy before it was published – so corrections could be made if the journalist had misunderstood an answer. Things are very different now with instant rolling news. So while there are far more news items about ME/CFS appearing across the whole media, I now have very little control over what happens after I have given an interview.

As far as your three specific points are concerned – we do try! We have built up an extensive library of good quality photographs of people with real ME/CFS, including people with severe ME/CFS. We offer to make these available without charge once we have the persmission of the person who kindly provided them. Unfortunately, newspapers, magazines and the BBC generally prefer to use their own pictorial content. I always offer to copy check what has been written and provide any necessary background literature on basic facts about ME/CFS. However, journalists no longer have the time to be going backwards and forwards with copy checks.

Finally, we have no control whatsoever over the headline that is going above these items. This is left to journalists whose job is to provide snappy titles that make people want to read the article. But that doesn’t always mean that the title is either accurate or helpful! So there are lots of challenges when it comes to getting ME/CFS into the media. The good news is that journalists are very interested in ME/CFS (and Long Covid) and most of the coverage we are receiving at the moment is positive and informative.