NHS England web pages on ME/CFS updated 29th October 2021 (NICE publication date)

Very grateful for highlighting Foggydog etc
I too feel like a 'hamster on a wheel' as described at NICE Engagement 5 years ago.. . !

 

Thank you to all engaged in this seemingly endless soul destroying work to get even the NHS follow the NICE guidelines.

 

How an S4ME formal complaint?

 

Moved posts

edited.
it has been indicated on twitter that the NHS website has already had a rewrite as part of the DHSC plan. What we now read & what has been quoted this week, IS an update written for the DHSC. Whether what’s there now is interim or supposed to be the End result constituting the March 24 update, perhaps other can say. Presumably It had had some General agreement. One can only hope the descriptions of tiredness and there being some treatmentS (On the nhs website, CBT is one) will be removed As part of a review, given they’ve been quoted in all the media Recently and viewed as generally unhelpful.

 

This page, https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/, says

Page last reviewed: 29 October 2021
Next review due: 29 October 2024

Perhaps what was meant on Twitter was that following the new NICE guideline the page was rewritten, as that would then seem to fit with the timelines indicated. The DHSC effort didn't start until 2022.

 

Twitter thread on this topic from @PeterW

"A few people asking about this, so here’s some more info. The NHS website text was updated 18 months ago by two people well placed to do so who are, I believe, fully supported by the ME community, one of whom has ME. This was done as part of the DHSC workgroups…"

"The text is much better than the previous one, but people feel it does not communicate the disease well. That is fair. It attempts to describe the disease to people who do not know anything about it. That is not easy. The charities do not (I believe) have a good solution"

"Texts such as “chronic complex multi-system neuro immune disorder” are difficult for people to understand, and don’t help people get to grips with the disease, or whether it fits their experience. We need to be able to describe it in easy English."

"This has been discussed, but replacing the text of 2 well-intentioned people with 2 other well-intentioned people is unlikely to solve the issue, it could just create another controversial description."

"I think we need a project to build a consensus description which organisations can roll-out when needed. It would need to be short and comprehensible enough for journalists and social media to copy/paste (think ‘would it work in The Sun’), and their readers to understand"

"I think that would actually be a significant piece of work… …But a necessary one. I think it’s a bit absurd that ME orgs do not have a good, accepted definition of the disease that others can copy / paste. I think it needs doing."

"It has been discussed, but apparently there is lack of willingness to do it as a stand-alone project. This is not due to lack of funds (there is a lot of money sitting in ME charity bank accounts), but lack of willing."

"In summary - yes, it is possible to do better, but it needs to be done properly and support needs to be sought from the patient community. Replacing one view with another, does not resolve the issue, and risks furthering existing mistakes."

 

I'm utterly flabbergasted to read that the NHS website text was written by 2 PwME. I am thankful for their effofts and intentions, and i agree the bits about GET that were in the previous edition having been removed is a good thing. But... How anyone with ME could describe it as 'extreme tiredness' & 'still feeling tired after sleep or rest', is just beyond me. Unless they are at the very mild end of the spectrum of severity. Its astonishing. The fact that it was written for people who know nothing about it & in easy english just makes it worse. Even replacing the word with fatigue or exhaustion would have been better.

As it is, looking at the symptoms list, every adult with a child under 5 will think they are suffering from CFS! For goodness sake, how does it feel to be bedridden, tube fed & catheterised, in constant agony, and have your situation described as tiredness. Sorry to whomever the authors were, i appreciate you tried & its a difficult task, but really... 'tiredness'???!!!!

If it must be described as if you're talking to a 4 yr old, then at least add in (in the symptoms list) something to clarify that it can be much more severe than this.

 

I agree, but I can see the caveat as well: it needs to be in line with descriptions of other diseases.

I looked at the page for endometriosis, and that doesn't adequately describe the life-trashing symptoms either. If this distanced style (which does border on glib sometimes) is an approach they've decided on, it might limit the traction we'd get on arguments for change.

I'm more worried about it listing CBT under treatments. If it's not even recommended in the management section for other long term illnesses, let alone treatment, it has to go.

 

You have a good point there @Kitty , well 2 good points, the CBT issue is a concern i agree.

 

For me the main problem is that PEM is not under the main symptoms on page 1. I have no idea how this happened. None of the statements are a description of PEM. The main problem as I see it is that nobody understands the characteristic symptom of the disease which is key to what it involves, what it is like to live with (or attempt to) etc. "Taking a long time to recover after physical activity" is not a PEM description and the others aren't even close to PEM. For me, this is bizarre and harmful and could be corrected in the interim by adding a bullet point on page 1. Nobody is clicking through to page 2.

The description of PEM on page 2 is inadequate and hardly recognizable either. It's obscured by the words "usually" and "sometimes" as well - as in "exercise usually makes the symptoms worse... Sometimes the effect is delayed." The PEM *is* the symptom characteristic of ME. This needs to be the first sentence of any description especially for use by people who don't know anything about it and members of the media etc looking it up.

For me personally this is even worse than the other problems. Am I missing something?

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

 

Agreed. I can understand suggesting a GP looks out for it in a ten min appointment when the patient mightn't have heard of the term before is difficult (although it should be something they should then be able to suggest, or ask around at the time and then be able to identify or rule out more confidently at a follow-up where a patient has studied whether or not they get PEM if they take a rest then resume activity etc)

But it absolutely needs to be in such a description in order that those who are looking for information that is easily understood are able to look out for it and rule it out or in with themselves.

I had another condition that I can now be very sure it is what I thought it was, because when I was ill recently and upped certain meds and rested it was much better (having been much worse due to certain movement-related antagonising before that) and then of course when that was over it returned. This sort of thing is pretty standard in getting to the bottom of what something is.

I do not understand why there isn't some attempt at simple descriptors to a protocol like this - particularly given the talk about PROMS and 'psychometrics' and what not. And given that many are ill enough they have to take e.g. a week + off anyway and then might do a phased return of some kind to whatever they do. And that this could be worked out to ensure it catches the milder end etc.

 

Those are good points @PeterW

I haven't read much of this thread and haven't looked at the NHS page at all so the following are general comments based on general observations in the wider ME community, with my linguist's hat on.

We often forget that different contexts require different styles of communication. We spend a lot of time within the ME community arguing about the exact right way of formulating an accurate description of ME (and PEM). A difficult task due to the heterogeneity of symptoms experienced and opinions held but also an important task and one that requires precise and sometimes technical language - but that's in the context of research and clinical recommendations.

By contrast, in the context of communicating outwards to the general public this type of language is not suitable. This appears to be recognised by at least some of the charities and certainly by most of the medical writers tasked with writing patient or general information for major health organisations who expect writers to apply the principles of Easy English. Much of the time this is a good thing but Easy English is always a delicate balance act between on the one hand being simple and accessible to people without strong language skills and on the other hand being overly simplistic and causing rather than reducing confusion or worse, harm. The latter is especially likely to happen with complex and poorly defined beasts like ME. From the little I've read of this thread it looks like the Easy English balance act might have failed in the case of the NHS description of ME.

Long-term I think @PeterW's suggestion of developing a "copy/paste (think ‘would it work in The Sun’)" description to be widely used would be very helpful. Nuance would inevitably be lost but the chances of getting the key messages through would be increased (with the current muddled messaging pretty much everything gets lost in transit between writer and reader except for the prejudices the reader already holds - and these risk being strengthened, not the effect we're after).

The team to tackle such a project this would ideally include expert-pwME who consult throughout with a wide range of other pwME, plus medical writers familiar with Easy English and other requirements of writing for the NHS and similar institutions, plus communication experts - ideally some with and some without ME or close connections to ME - who can give feedback on how different audiences are likely to interpret a proposed text.

In the short-term I suggest this stop-gap solution to minimise damage until we get the long-term messaging sorted:

Don't talk about fatigue at all. Most definitely don't talk about tiredness. Instead talk about feeling ill. And yes yes yes I know, fatigue is in the diagnostic criteria and all that. Which makes things awkward. However, by talking about feeling ill we're not excluding fatigue, anybody who's ever been ill knows that includes feeling fatigued or tired or exhausted or wiped out or whatever you want to call it. Crucially, 'feeling ill' suggests a broader range of symptoms in addition to fatigue. And, while I haven't checked, I'm pretty sure 'feeling ill', like 'being tired', passes the Easy English test

 

Goodness me, if the NHS website, well to be honest almost any website giving a basic description, dropped the use of fatigue/tiredness & replaced it with ill... i'd be ecstatic.
But i think thats highly highly unlikely. Given they all think that 'the clues in the name', i cant imagine them ever not needing to talk about tiredness. (by They i mean the medical establishment, media & public at large), and so many people who've been dx in the last 10yrs only talk about their 'chronic fatigue' & how tired they are.... so

Yeah, i dont feel tired i feel ill, but i have just given up, i am sick of arguing with medics who are completely unable to hear anything unless you use the word fatigue. I have tried telling them 'doing XYZ makes me feel really ill' & they just ignore it, they only listen at all if i say it exhausts me. I have resigned myself to it i'm afraid. But we really cant allow it to carry on saying we are tired, because while ever it does, apart from the fact that anyone with more than mild CFS will think it cant be this that theyre suffering from, it will also simply cement in the minds of every nurse, dr, physio, and member of the public, that while they are knackered & just get on with it, we are knackered and go all 'snowflake' & take to our beds.
The refrain "i reckon we've got a bit of that 'chronic fatigue' lark, dont you"? (Accompanied by the requisite eye rolls & sneering) will continue to echo in every hospital ward where the poor severe patient is asking for a side room, in every ambulance, school (pity the poor child!), social services and benefits office, & by every Drs receptionist refusing to make adjustments or neighbours being asked to keep the noise down. Not to mention the family members and all the horrors there.

Sorry i know you know all that, but ijust had to say to remind those in charge that its not about some abstract description, the NHS has such authority that spouses are likely to get angry with a bedbound partner when they're having to look after the kids because their spouse is "tired".

I am beyond frustrated that anyone thought that putting it in easy english trumped protecting PwME

If the NHS require the use of 'tiredness' for dumbing down purposes, there could simply be a bracketed note after the 'main symptom is extreme tiredness' sentence saying (this is far beyond the usual type of tiredness healthy people experience after lack of sleep or excessive activity, and is overwhelming).

I mean i hate that, but it'd be better than letting people think that because they been up all night with their toddler, that they are experiencing the same as us!

Sorry i'm ranting, i'll shut up now

 

I agree with most of what you've said, but I think this would be problematic. It's such an overwhelming part of the experience, especially for people who're undiagnosed.

If people are brain fogged—and they may not know they are, let alone have a useful word for it—feeling tired, fatigued or exhausted is sometimes as much as they can communicate clearly. It's even harder for young teenagers, who might only have experienced colds, coughs and sickness bugs before.

Fatigue needs to feature in the easy-read description, but it shouldn't be presented as the main symptom. I'd been ill with ME for 27 years when I was diagnosed, but it wasn't until I read a list of symptoms that I even understood I had them—when you don't know what's wrong, you don't know how to attribute things. I felt as if I had a virus a lot of the time, so I assumed I did and the other symptoms were something else.

PEM, and an outline of how it works, is perhaps the best place to address the tiredness issue. It might be useful to differentiate between fatigue and fatiguability too, but perhaps not using those terms.

 

I am not clear whether the update constitutes the anticipated March update or not? The charities spokeswoman said on Facebook a quote that it’s in the plan but if nothing happens they will have another go. This really isn’t good enough. The charities would know if there is an imminent satisfactory further UK update planned for March , surely. If we are now going to have consultation - unconfirmed - it adds months onto something people wanted / expected to see sorted before or very soon.

 

For an illness which can be seen so easily and clearly by those who live with us, it is extraordinary how difficult it is to describe to others.

We have noted how often a new recruit to the supporters of those with ME has a family member with the disease. But we can't convey it to others who have never seen someone 'crash'. I wouldn't use either 'tired' or 'fatigued' to describe how I feel. I would probably say exhausted but maybe this is too run of the mill, too used in everyday language to be appropriate in ME.

My family will see eyes that have become slits; I don't have the energy to keep them fully open. They will see me become breathless if I try to stand and sometimes see me unable to stand or even lift my head. The worse I feel, the flatter I have to be, and they see this time after time after time.

And this will go on for days until I recover enough energy to start to function. This seems a crucial part of ME, that recovery is not quick. I remember telling the doctor who initially diagnosed me that it was like a kettle that had a water level in the side. You could put a little water in, boil it and make a cup of tea. But with ME, the "kettle " has to be full before it will function again. It was at this point that he "got it" and told me I had ME. I had no idea.

Are there such things as technical writers used to describing /explaining. new items? I feel we need to put aside our usual words and start afresh. I think zi may be repeating in a slightly different way what has already been written but tired/ fatigued/ exhausted just don't cut it.

We need explanations that will make sense of what we are experiencing, that can be seen by those who live with us.

 

Yes, of course fatigue - by whichever name you want to call it - is a huge part of the ME experience. Every time I suggest on some forum that we should drop the terms fatigue/tiredness I get pwME react with 'but I am so so so very very tired!' Yet they also, always, without exception, go on to say something along the lines of 'but ME is sooo much more than fatigue' and 'I wish people would understand it's not just being tired'.

That's why I'm not saying ignore fatigue but, as a stop-gap measure, fold it in under 'feeling ill'. This could be expanded upon by then listing a range of symptoms to describe 'feeling ill' and one of those symptoms could be feeling utterly exhausted for no good reason. [This may not be the best thread to discuss the finer details of exact phrasing but I want to give any NHS writers sneak-reading here something to think about ]

I think a big part of why everyone defaults so easily to using fatigue or, worse, tiredness is that that's what we - patients, doctors, everyone - have been 'trained' to do for decades via the name CFS and doctors asking us if we feel extra tired or fatigued - sensible when looking for other illnesses - but never asking if we feel extra ill let alone if that feeling extra ill has any strange relationship to exertion.

Calling our symptom complex fatigue or tiredness is a cultural habit that unthinkingly gets passed down the generations. Habits are hard work to break but we can try

 

Yeah.