UK: Action for ME: Media Guidelines for reporting on M.E.

[NelliePledge]

We have a right to whinge about anything. Many of us have experience of writing for professional and public audiences.

 

[Shadrach Loom]

We have a right to whinge about anything. Many of us have experience of writing for professional and public audiences.

Sure. I suspect that most of us on this thread have. It’s why we’re writing in paragraphs on an old-school message board rather than migrating with everyone else to social media.

But the chap at AfME is in the privileged position of knowing which particular writers and newsrooms he and Sonya C are hoping to support, and what sort of resource they are expecting. And he’s got something out which presumably meets those internal and external expectations.

 

[Hutan]

@Sarah's letter (posted above) was brilliant.

I wouldn't characterise the comments on this thread as whinging. I think the quality of that media guideline matters, and it is falling short of the standard it needs to be.

As well as the problems of content, the guideline is very repetitive and contains some information that contradicts information elsewhere in the document. I'm not a journalist, but I'd be surprised if they want a repetitive document with internal contradictions, errors of fact and misleading statements. Certainly, as a person with ME/CFS, that is not the sort of document that I want journalists to have.

Given the effort members have put in to informing AfME, I feel doubtful that they will be improving this document. Perhaps a way forward is for Forward-ME to prepare a new Media Guideline that can be used by all the member charities and that can make this one redundant? If a good guideline was made, charities around the world could use it. Alternatively, someone on the forum could draft one, and we could refine it and offer it up for charities to use.

I do hope someone will direct the AfME Comms Head to Science for ME. The forum, and the members here, are a resource that can help them do their work well. Unfortunately, ME/CFS charities usually can't afford to have a Head of Communications, and, when they can, it is probably someone, as suggested is the case here, who is early in their career and lacks knowledge specific to the subject. Fortunately, what the ME/CFS community does have is a whole lot of people with experience from the careers they used to have, with the time and motivation to help. It just takes some humility and sense on the part of the charities and the staff within it to make use of that resource.

 

[FMMM1]

"Yet at present there is no definitive diagnostic test, no universally effective treatment and no known cure."

They are still creating an impression that there are effective treatments for M.E.. I'd like to know what they think are effective treatments.

Yea, hard to understand where they're going with "no universally effective treatment" - drop "universally effective" ---- but then that bears no relation to the original statement.

 

[bobbler]

But of course, a charity that helps everyone with ME/CFS, helps people of all ages. Just because another charity has a specific section for a particular group doesn't make that any less true.

Does the fact that AfME may not have a specific section focused on people aged over 75, or people whose first language isn't English mean that they aren't providing some level of support to them? Of course not. The same is true of the ME Association: the fact they may not have a specific section focusing on children and young people does not mean that they don't provide some support to children and young people. And so on, for other UK charities trying to help people with ME/CFS.

It's wrong for AfME to tell the media that they are the only UK ME/CFS charity worth talking to. I want to see good ME/CFS charities cooperating with each other; there's plenty of work to do.

As I was double checking what they said, to reply to Trish, another few more issues jumped out:

That's pretty much a meaningless statement. Some cancers are slow growing, easy to treat and pretty much inconsequential in terms of quality of life e.g. an early stage basal cell carcinoma.



That point is just weird. How many times have we seen people with ME/CFS described as 'high-achievers' because they only have mild ME/CFS? I can't think of an instance. I think someone has misunderstood the valid point that people with ME/CFS are often and incorrectly stereotyped as Type A people, people who have brought ME/CFS on themselves by working too hard or being too stressed and perfectionistic.



A 2017 paper in the Journal of Psychosomatics is cited as the reference for that. The first author is Castro-Marrera, probably the same one who has produced other papers that we have criticised on the forum. One of the five subsets they identified had high cholesterol for goodness sake. The abstract gives no indication of the prevailing rates of co-morbidities in the general population. Other "conditions" are of the sort that people tend to collect when they are trying to find some help - 'psychopathology', fibromyalgia. Why is this an important fact to put in media guidelines? Why is this paper one of a select few listed to inform the media?


Of course there is some good stuff in the AfM

To be fair I have had someone (who happened to be a CBT person) mentioned someone who was mild to me and how 'I really like x and look at the things they manage to do' when I was severe. People are that dumb, and the worst issue was that said mild person (who when they were more ill had quiet and consideration more) was and still is getting more consideration than me as someone severe - including when certain individuals actively had to choose between which one they were inconsiderate to and others watched.

I've also commonly had people give me advice as part of a discussion where I assumed they knew 'me' and heard what I'd said and had to stop part way through and ask whether they knew 'what ME was' for them to say 'yes I have a colleague with it'. Now said colleague could be mild, have been through less or indeed they just don't see the reality of them - and yet people really think they are 'experienced in making such judgements' based on what they think they see of one situation.

The severities issue is very real indeed.

But I also agree with what you have said regarding the fact they need a 'banned tropes' list and insinuations of perfectionism, high achievers, motivation - basically they are obviously misogynisticy sounding terms to be anyway veiled and often coming from the mouths of women as much as men - should also be banned as belittling terms both taking away people's achievements whilst inferring their 'condition' is down to them. And let's be honest a lot of this is down to situation being worse than it need be and those attitudes are just deliberate efforts to cloud not changing current ones. They are used to re-word reality normally. To tell others the issue is the other person expecting too much - as if that is pathologic.

These two issues are hard to get right, with the correct nuance whilst maintaining impact, balance (across severities) and brevity and clarity so they ever get used without being edited (which would defeat the point if they just get their meaning warped by free-editing). But it doesn't make it impossible, or such feedback unnecessary.

I do think we need to acknowledge what a hard - but important and worthwhile - job it is to continue going to get it right. Messaging matters for ME probably more than any other codnition given current and past misinformation.

 

[bobbler]

It depends on the people and the context. Journos are professionals and give reasonable attention to whatever they are writing about. Press releases have to be punchy to cut through, but once a journo is committed to doing a story - whether that’s 200 or 2000 words - they will spend 10 minutes on a lengthier crib sheet from a trustworthy source that protects them and their editor from Twitter pile ons. As @CRG says, that’s what press packs look like.

From a quick LinkedIn stalk, AfME’s comms head is reasonably early career, but he has a couple of years experience in a gambling charity and prior to that was working for the Labour Party chair. So he’s had enough contact with the press to know what they want. I think that as patients we have more right to whinge about content than about form and style.

Agree. 'Style guides' are pretty common, will be familiar to journos and act like glossaries at the back end whilst focusing on the 'capturing the spirit/essence and reason behind' at the start. If you imagine the letter vs spirit of the law phrases.

And journos are having to maybe write something quickly, in line with their own editors views, their own publications style guides and maybe if it isn't a spoon-fed wanting to put their own angle on. All have to read definitively the same thing from whatever guide if anyone ever cares to go back to 'why have you worded it like that', so lack of explanation can be problematic as ambiguity is a real enemy.

Put with these things there is a fine line between something that 'can be parsed' to manipulate meaning because it is lengthy and nuanced vs too short and 'taken/inserted out of context' because it has been kept short and hasn't been contextualised.

And as for staff hours, there is nothing more open-endedly time consuming than stakeholders and committees on something which is trying to cover such a range and breadth in every dimension possible.

It is always a barter of clarity and succinctness vs compromise for sign-off so this type of document is basically 'the head of the beast' for probably the most complicated illness and context there is. And each time an amend is made it isn't a simple short sign-off but going through the whole loop again (which will get more feedback) - meanwhile old tropes and misinformation are going out.

More to the point is whether this is a document that will have new versions further down the line where more could be done than when the 'status quo' makes going around in circles a bigger issue than getting something that isn't too terrible out as a step in the right direction.

Minds don't change that quickly anyway (it's often step-wise). Backlash, putting people offside or getting labelled awkward can easily overshadow the message you want read for ages. So, switching out misinformation for something that is a bit better sooner really does increase openness later if 'perfect' is ever achieved (and probably means less explanation will be needed of that if people are less misinformed).

 

[bobbler]

Sure. I suspect that most of us on this thread have. It’s why we’re writing in paragraphs on an old-school message board rather than migrating with everyone else to social media.

But the chap at AfME is in the privileged position of knowing which particular writers and newsrooms he and Sonya C are hoping to support, and what sort of resource they are expecting. And he’s got something out which presumably meets those internal and external expectations.

 

[bobbler]

"Yet at present there is no definitive diagnostic test, no universally effective treatment and no known cure."



Yea, hard to understand where they're going with "no universally effective treatment" - drop "universally effective" ---- but then that bears no relation to the original statement.

You see just to example the situation: I disagree with that.

Misinformation in the past has led to some never being given any medical treatment or support for anything because of that one-liner that I do think was concocted as an advertising message.

Of course nothing cures or fixes ME, but it doesn't mean that any medics who meet us should wonder why on earth we have turned up at their doors 'because have we not got the memo'.

Because there are some things that help some at certain stages, including getting comorbidities and specific 'symptoms' (or maybe degrades of the body due to the condition in people who have different 'tendencies' to different things e.g. in healthy people we know 'it always goes to Jim's stomach whilst Jerry ends up with a migraine').

Just because something doesn't work for everyone who has been chucked into a bucket does not mean that the individual who has sensible reasons that add up and are exampled for their body and history didn't work. The problem with 'lowest common denominator' works both ways.

 

[Hutan]

That issue isn't impossible to manage.

Comorbidities are separate diseases that might be able to be treated; I don't think the fact that, for example, pressure bed sores and vitamin D deficiency are a possible outcome of being bed bound and that preventative actions and treatments exist for those problems invalidates the idea that there is no treatment for the core disease.

The fact that there are useful medical responses to symptoms (e.g. tube feeding when eating is too difficult; medication for pain) also doesn't invalidate that idea.

So, rather than 'no universally effective treatment', it could be said that 'only limited treatments for some symptoms', for example. 'No universally effective treatment' implies that there is an effective treatment for the disease for some people - and, as far as I know, there is no evidence to support that.

If people still think it's too hard to say whether there are effective treatments or not, then just don't say anything about that, and stick to just 'There is currently no cure. Treatments that were promoted as being useful in the past such as Graded Exercise Therapy and CBT aiming to fix false illness beliefs have been shown to be ineffective and are no longer recommended.'

Anything said in a media guideline needs to be very solid. It's better to have a gap than to say something that is incorrect or gives the wrong idea.

 

[FMMM1]

No universally effective treatment' implies that there is an effective treatment for the disease for some people - and, as far as I know, there is no evidence to support that.

Treatments that were promoted as being useful in the past such as Graded Exercise Therapy and CBT aiming to fix false illness beliefs have been shown to be ineffective and are no longer recommended.'

Yea that's something that worries me - as currently drafted, the reader might think that those are still an option for some people [worse still - maybe they'll think they work for the right sort of person!] --- yet there is no evidence that they are effective.

Anything said in a media guideline needs to be very solid. It's better to have a gap than to say something that is incorrect or gives the wrong idea.

 

[bobbler]

That issue isn't impossible to manage.

Comorbidities are separate diseases that might be able to be treated; I don't think the fact that, for example, pressure bed sores and vitamin D deficiency are a possible outcome of being bed bound and that preventative actions and treatments exist for those problems invalidates the idea that there is no treatment for the core disease.

The fact that there are useful medical responses to symptoms (e.g. tube feeding when eating is too difficult; medication for pain) also doesn't invalidate that idea.

So, rather than 'no universally effective treatment', it could be said that 'only limited treatments for some symptoms', for example. 'No universally effective treatment' implies that there is an effective treatment for the disease for some people - and, as far as I know, there is no evidence to support that.

If people still think it's too hard to say whether there are effective treatments or not, then just don't say anything about that, and stick to just 'There is currently no cure. Treatments that were promoted as being useful in the past such as Graded Exercise Therapy and CBT aiming to fix false illness beliefs have been shown to be ineffective and are no longer recommended.'

Anything said in a media guideline needs to be very solid. It's better to have a gap than to say something that is incorrect or gives the wrong idea.

EDITED: There might be something technically 'correct' (but what others will read from it different matter) to write and cover it all. And agree on the importance of this area. But in a one-liner it can have bad impacts either way (and will be twisted anyway) so I think it is tricky when thinking about how this bit is best got across.

And how it can be achieved and whether working on this will change that much right now. vs taking that same energy to do that and putting into a supplement for a later stage that can do it properly.

I do think that the nuance is something that will take ages to work on, and would be hammered home better as part of a 'campaign' or press release or some sort of article that elucidates the situation (ie describe the full situation where some get sensible care where obvious helpful things are tried and some have literally been deprived of that for years - which a one-liner can't encapsulate the breadth of).

That's the only way you'll get people to understand the nuance of what is in it and then get traction in a one-liner that is heard and read to be as intended. Build up actual knowledge rather than hoping people notice the semantics.

I'm actually saying that this is a hard one 'that needs to be done properly'. and for right now, whilst we need to get the no-brainer stuff out of the door that can be one-line corrections, the better request on that one is that it is put on a priority list for being given focus in that way.

Maybe it is a one-sheet at a later point that includes what you have just put with some of what I've put. All this shouldn't matter but shockingly the NHS site does an utter red herring. So any one-liner with get twisted to assuming they meant that instead of converting a new reader without supplementary info. The boxing-in with this and the misinformation that line would be working against ...

 

[Sarah]

I had a look and compared the published document with the draft media guideline and the feedback email I sent. A number of the items of feedback have been incorporated or partly incorporated, albeit sometimes inconsistently, but a number haven't been taken up. In places, the English also needs brushing up.

It seems like more edits were made to the 'Why these guidelines are necessary' and 'Use of language' sections than to those of 'About Action for ME' (no changes), 'About ME', and '10 Key things'.

I didn't get a chance to read your draft email before you deleted it, @Trish, but I think it may still be worth giving feedback.

 

[Trish]

I didn't get a chance to read your draft email before you deleted it, @Trish, but I think it may still be worth giving feedback.

It was only the rough beginnings of a draft, and the points were covered more clearly in your submission. I concluded it wasn't worth putting a lot of effort into something likely to be ignored. I wasn't able to put in a comment in the consultation period.