United Kingdom 2022: Action for ME (AfME) Consultation on media guidelines

I agree with @CRG, it's unclear to me whether the 10 point guideline is being replaced, supplemented or is the draft handbook. I agree with @Hutan's points. A few additional ones on the content from a quick read through this evening.

Why these guidelines are necessary

Makes it sound that being considered to have a 'psychological condition' is worse than having one that is not real. Probably best to steer clear of statements like this and instead highlight stigma and disbelief.

'Enforced exercise' isn't accurate. Perhaps better to explain in plain language that graded exercise was previously recommended, but leads to deterioration in many according to patient surveys, and is no longer recommended for pwme.

About Myalgic Encephalomyelitis (M.E.)

Categorised as neurological by the WHO but not correct to say it is neurological. Also not sure what the basis for stating the neurological and immune systems are most commonly affected is.

Use of language

Emphasis on 'wide variety' could be misleading without providing specific information about symptoms. It might be better to suggest focusing on the core criteria required by NICE for diagnosis and to refer to some of the NICE additional symptoms also experienced in other illnesses if there is room in a piece.

AfME ask not to refer to fatigue in the language section but then refer to persistent fatigue when describing ME in the 'About ME' section, contradicting the former recommendation. I think it's fine to refer to fatigue, which is part of core NICE criteria, for instance.

I don't think it makes sense to insist that even mildest cases have at least 50 per cent reduction in usual capacity in this context, as pwme may be high functioning but still experience pem and other symptoms and are at risk of deterioration to a more severe level, especially if they read this regurgitated in the media, which could also lead to scepticism about the illness in higher functioning pwme from family members etc.

Perhaps could add to this to suggest avoiding inclusion of anecdote that attributes recovery to a particular treatment or alternative therapy, as there is no evidence for this.

Bit about supporting people of all ages probably stems from the merger with AYME and the support and services they offer specifically for children and young people. It says similar on the AfME website homepage. I agree re Forward ME and this could also serve to open up the image bank suggestions. The MEA produced a short guide to the NICE guideline which might be a useful supplement to send out with this.

 

Those figures are way off. Even with fraudulent loose criteria like CDC 1994 the prevalence of ME is about 1 in 500 or 0.2%. With the CCC it's 0.11%. Google tells me the worlds population is 7.753 billion, 0.2% of which is 15,506,000.

 

As a side question to all that your point about "be careful about referring to mild":

I've seen it written here that the mild, moderate etc might be better described in 'stages'. I can see the benefit of this for these types of comms, I can also see the important of it in lobbying for/changing services to ones that treat a disease that waxes, wanes, progresses etc.

There are a number of other things (more examples below) where I think that whilst we have these working groups them all signing off and nailing down better vocab which has more clarity and is intuitive and diagrammed would help leaps and bounds. But only if the weight of all organisations around it also adopted these terms - to stop all this damned confusion and message-mixing.

Can these working groups do this - would it be allowed in their remit? At least then they would have it in all their docs and ForwardME could also and if it is more logical and understandable than the touchy-feely terms of BPS we'd make headway?

I mention it now because whilst this doc does clearly need updating it has brought up some bigger questions for me - and coherence across the 'friendlies' is a biggie.

And yes I'm divided on answering this because there is the picking round the edges vs really they need a good diagram box to say what it is, and a clear list of terms and words. Note all the various other terms are just rude discriminatory tropes now, call it what it is. Even the press must be getting bored of the same 'click-bait' pretending 'it's a debate'.

Do they really get more clicks and comments/shares from bigots who want to write malingerer and people selling their mind-body wares than they would from people who know someone with the condition or are interested in it looking for grown-up content?

But I know I need to be a bit more measured to the task at hand and context re: question above..

Example:
I also think a lot of the ME/CFS vocab is muddled (where Crawley changed relapse+crash into 'flare' for both, but also people use their own terms), doesn't 'stack' e.g. it should be possible by know to have logical terms that follow each other for baseline, over-baseline exertion, PEM, rolling PEM, the bit in-between these where people can get wired before they need to rest, crash and the rest needed with that, relapse. So that these have terms that make it more obvious on a diagram form that one is worse than the other and is 'intuitive'. But also relapse doesn't necessarily make sense when it means 'get worse' rather than most would read it as 'weren't ill before as it was dorment, then it came back'.

I find the most important need to know for anyone about our illness is: we have a baseline, it will be different for different stages (so a diagram useful here), going over it has increasingly great consequences for which rest is needed but no guarantee of recovery. Pacing involves rest breaks, crashes/PEM and so on is a different kettle of fish requiring not pacing but 'recovery-rest'. That last bit seems to have been hidden as a message.

 

Excellent question. I could hazard a guess or two, but it probably wouldn't be very scientific or constructive..