"Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

[RedFox]

There's a deep unfairness to the terms medical harm. My best guess is that the author means it's a health problem that is either measurable or might kill you. Thus, inability to take care of yourself, work, or have fun aren't counted. Symptoms whose causative pathophysiology is not known don't count, even if they cause unremitting and unbearable suffering.

 

[dratalanta]

What I learned from this is that there are media outlets willing to publish articles with no obvious content or interest providing there is a clickbait hook (am I ill?) and a flimsy pretext (ME Awareness Day).

The big charities need to look again at their media strategy and work out how they can get their press releases picked up more widely. There’s no reason in principle why the MEA shouldn’t produce a release with text that’s just as clickable, with the same hook but some accurate content.

 

[CRG]

The big charities need to look again at their media strategy and work out how they can get their press releases picked up more widely. There’s no reason in principle why the MEA shouldn’t produce a release with text that’s just as clickable, with the same hook but some accurate content.

I think that is in danger of minimising the challenge - it's way bigger than writing a better media release, and while we have larger and smaller ME/CFS orgs - none of them is large in terms of media presence, and size matters.

The ME month/week/day is a notable problem because no one owns it so anyone can hijack it for whatever purpose. As a strategy the month/week/day designation is from an era when there was not a crowded calender (the competition is endless https://www.awarenessdays.com/awareness-days-calendar/) and in any case there's never been a single organisation able to take control or fully utilise the ME date designation, and that's without the seismic changes that have resulted from the Internet, Social Media and the collapse of traditional journalism. These changes have been difficult for even major PR and advertising players where audience segregation, commoditisation, deskilling and technological replacement continue to happen at a dizzying rate, for small single subject, low budget organisations the challenges are profound.

I would say the place to start would be international co-ordination of message but with many small organisations each with their own patch to promote/protect that doesn't look like a particularly strong proposition.

 

[Fainbrog]

I would say the place to start would be international co-ordination of message but with many small organisations each with their own patch to promote/protect that doesn't look like a particularly strong proposition.

I get the sense that this is what the World ME Alliance is trying to do. There was clearly some attempt to coordinate the one day thing this year, but in the UK we then had MEA going it's own way with ME Awareness Week and a different # on social media than the WME Alliance was using.

Which made me wonder, as an aside, whether MEA was not invited - which would be very poor form, or chose not to join - which would also be very poor form imho when there is a clear attempt to mobilise something meaningful internationally for a single day, which would seem a potentially more effective proposition in the long run.

(We're obviously risking this thread going off topic, so, happy for this to be moved elsewhere if needed)

 

[CRG]

I get the sense that this is what the World ME Alliance is trying to do. There was clearly some attempt to coordinate the one day thing this year, but in the UK we then had MEA going it's own way with ME Awareness Week and a different # on social media than the WME Alliance was using.

Which made me wonder, as an aside, whether MEA was not invited - which would be very poor form, or chose not to join - which would also be very poor form imho when there is a clear attempt to mobilise something meaningful internationally for a single day, which would seem a potentially more effective proposition in the long run.

(We're obviously risking this thread going off topic, so, happy for this to be moved elsewhere if needed)

The MEA isn't listed as being a WME Alliance member although AfME is, and Sonya Chowdhury is co chair of WME Alliance. I wouldn't minimise the difficulties that an organisation may have in co-ordinating specific activities with other organisations which may be operating in very different cultural, political and social contexts, especially where different organisations have well established programmes or a supporter base built around familiar activities, although I don't know anything about the MEA non relationship with the WME Alliance. It's possible there is a constitutional issue regarding MEA being a member of WME Alliance.

While having a global network using a common calender is likely to be useful, the focus on events without examining the (sorry jargon usage) "message" is missing the fundamental problem. Organisations tend to do events because either that is what they've always done or some received wisdom says they should be done, without anyone asking the question "why do them at all ?". As things stand ME month/week/day exists as a void to be filled but I doubt anyone has a clear answer as to what definitive or measurable outcome is to be achieved by this filling nor even what filling is needed to match what outcome. I'm not denigrating any individual efforts that are taking place but the focus article of this thread shows that no one has (again more jargon) "control of the message" nor a "fill" that is palatable to the Media when it comes to the ME month/week/day void.

So my jargonistic call for "international co-ordination of message" was more about the need for an ongoing conversation about what ME/CFS advocacy is intended to achieve in an era of a radically changed Media and in a massively crowded advocacy environment.