It's very good to hear that this is sensible. Based on the quotes provided by Nightsong though, this document could have been refined with the input of patients.
For example, here's some thoughts about that paragraph about PEM:
It would be better to refer to cognitive activities than mental activities (but it's good that emotional activity was not listed separately)
The impact of post-exertional malaise is always felt straight away - if you have it, you know, right now. I think the suggestion that the impact of post-exertional malaise is not always felt straight away was an attempt to talk about the delayed impact of activity. Therefore, it is the impact of the physical and cognitive activity that is not always felt straight away, not the impact of PEM.
And actually, the symptoms of PEM do significantly improve with rest. Rest is the only thing we really know that helps PEM to end and reduces symptom load. If we say 'symptoms do not significantly improve with rest' then there is no point getting the person with ME/CFS some help with housework or making it possible for them to reduce work hours, for example, because they could carry on with the same level of exertion that they managed before becoming ill.
I think it's a shame to use the illness name 'ME'. I thought we were moving to a consensus of using ME/CFS? ME as an abbreviation makes the community a sitting duck for accusations that this illness is a result of rumination about oneself and one's symptoms - 'it's all about me'. ME does not sound like an illness, it sounds like a pronoun.
I also hate seeing 'distress' used in this context. I've seen clinicians with BPS views say things like 'I'm sorry that you were distressed'. The word puts the responsibility for us feeling concerned on us, the inference is that I could have chosen not to be distressed. Distress is just a short stop from hysteria, it's the domain of damsels sitting in towers waiting ineffectually for someone to rescue them.
By saying that the healthcare professionals are only adding to our distress, it implies that we are currently distressed. And sure, sometimes I guess we are. But, we are not always emotionally beleaguered, we also have self-efficacy.
It would be much more powerful to focus on the action of the healthcare professional in that paragraph, to say that the dismissal and discrediting of the healthcare professionals is harmful. These are things that the healthcare professionals can stop doing, must stop doing. It is not about our emotional reaction to what they are doing, which might be portrayed as out of proportion, it is that what they are doing is fundamentally wrong and unprofessional.
I think it is okay to offer suggestions for improvement to our advocates. These are mine, adding to the points that Nightsong made, based on the quotes I have seen. I think we can acknowledge the effort and commitment, and the successes of our advocates, while still working towards making advocacy better.
Agree it isn’t good enough
And particularly because it hasn’t sought to find the most experienced patients (some of whom might have been nurses or had experience of good care) to be writing and checking these. Though thumbs up to this being exactly where we’ve our best chance of getting support that makes a difference I think is via nurses it’s really vital we are getting this right as a project. Changing words later will just confuse messages and many might have tips on what really helped and it’s the ‘how’ things are done as much as what with our illness (like having a consistent appointment time so you can plan) and will give insight so they get what we have and we stop giving out the ‘fatigue’ message inadvertently but bring alive the payback and limited ability etc.
We only get a few chances of getting these right and whilst ‘design by committee’ often leads to bad design if it is just focused on the politics of it, there is such a thing as having a good process where those expert on x are asked to input on x ( and read overall doc for concerns regarding their angle) and those on y for y and so on.
Something along these lines has been needed to be done properly for decades so there really is no excuse for there not to be skeleton drafts looking at the issues and key phrases like those you’ve highlighted for these types of areas so that they are ‘pre-addressed’ - it’s all still very rush around amateur hour if we’ve one or two people having to ‘bung something together in a few days’ starting off what by fishing out the old one done by someone who mightnt be good it might be out of date. When those in charge of these things could be being given time to have had that old one out and checked as soon as it was just a week old so that notes in ‘what could have been done better’ are always being collected ahead of that next one.
So that banks of collateral are being built up so these phrases and nuances are being nailed. I’m sorry but it’s really poor stuff for the charity to be getting the ‘rest doesnt help us recover’ part wrong still… it’s a one-liner that’s bugged me for decades bringing said in my name. Those types of lines are so key to get the nuance ABSOLUTELY agreed on that I have to be cynical when charities keep not nailing it (another one that drives me mad we haven’t as a community nailed down to a ‘say as rote’ one liner is people still calling it an illness of exclusion - when it’s more complex than that so needs to be nuanced better because many of us have comorbidities and saying that just plays into the old cfs label being used as a way to deprive us all of medical care for any other illness we get instead of ACTUALLY the opposite message being intended which is that we continually need to be being checked for the things that can be sorted that we might have on top and aren’t going to help the me/cfs if we’ve eg b12 or iron deficiency on top).
Sorry but as getting large amounts of rest is our only lifeline to surviving then I’d be illogical not to question why anyone representing us wouldn’t be making sure that is emphasised as necessary throughout any document produced ever. It’s a can’t mince your words on that point message and there’s no excuse anymore for it being left ambiguous and not having an assigned person just proof-checking for that bit (does this document make clear our one take home is: if your pwme needs two weeks if hypersomnia after an appointment to recover that’s normal and the right thing to support, just learn if you can reduce how much exertion the next appointment is).
And I’m bored of being told that for the hundredth time I have to assume it’s accidental or good intentions or will be gotten right next time when given if never is I should logically be allowed to assume and ask the question whether it’s deliberate and what they really think.
Because that’s the impression they will be giving those without me/cfs who read it and those lines will undermine my words when I try and say them now because it is ‘in my name’ and so even if we had someone prepared to read these then ‘fluffing’ - if that really is what it is- these important lines is screwing me speaking for the next 3yrs
It’s like taking an advocate to an appointment because you assume they get it and will help you and finding in front of the nurse or doctor they haven’t practiced what I had instructed them to say for me and instead either engaged in paternalism because they got peer pressure and wanted to be thought of well by that nurse (even tho how much harder do they think it is for us then if they even bend to the easy option and undermine us when they have that much more power than us) or just haven’t taken the task seriously enough that they’ve practised it to get it really right and make sure the message heard will be nuanced and really clear.
I’m not being grumpy here but I am saying either the resources has STILL not been put in correctly so there is a team getting the ‘what are our messages’ which should be task one fundamentals right. What’s the point of awareness of ‘any old message’ ??? And the next lot then contradicting those do the ‘awareness’ is turned into confusion?
But I think this is a charity ‘in our name’ and this stuff should be the bread and butter they’ve made sure has a proper team in doing it well, all the time. Not asking some person to just write something off the top of their head in two days and ‘run past a few people’
And I think when I contrast this with eg how we have been replying to Dr Cheston on her much more difficult and unusual situation (she was having to thread a needle dealing with difficult people and didn’t have the same ‘could have got many of these questions nailed years before’ type of title ) alone in her own name, then our replies seem very imbalanced as a comparison and this one we are having to still do the whole ‘wait for the next time, again’ because we are so used to it being fluffed but actually this one is one they should have anticipated as it’s bread and butter things that will come up for a charity.
Not that I don’t think both situations wouldn’t have benefitted from having and wanting input from those who are well-positioned to be seeing the big picture and spotting how bps uses things or those on the ground might mis-read one-liners. Though I know finding those who will make the job easier/done better rather than just be another layer of admin is another thing etc.
I’m sorry but I’m frustrated because I saw all of this that’s coming now with all the Burton and Deary and bps stuff coming and was flagging it but no one listened until after the fact, including people who were more well than me I think having whatever was in their head stopping them from getting involved when they could have had 6-12 months knowing this was coming and planning comms knowing their tactics but seem to want to choose to pretend everything is last minute and has to be done in a rush. We don’t have to believe the worst will happen but we do need to acknowledge the writing on the wall possibility and I don’t know what’s going on in the background where people wait until these deeds are done because they don’t want to themselves be accused of catastrophising so people like me suffer both where we are made to feel that by allies when we flag the risk is coming and then said allies hsvent prepped for that risk when it lands either so we get more strait-jacketed as if it has taken people by surprise than was ever necessary
When all it took was the horizon scanning and experience for me to see it so if these representatives aren’t seeing it themselves then why aren’t they hiring and listening to people like me if they can’t do it themselves?
I get that resources are tight but it’s often about ways of working and choosing not to plan ahead by having key chunks of collateral that will always be needed being discussed and planned regularly instead of just getting things written as if it’s a surprise at two days notice.
It feels like it’s time if the intention is there and these messages being wrongly nuanced are an accident then someone needs to sit down and have a proper chat and look at the processes and procedures and department for getting this right and planned for and horizon scanning and resourcing it properly with the right people so it stops taking them by surprise.
This type of article could have been anticipated a year in and had a really hot group including some good nurses and some experienced patients drafting what words not to use and what suggestions could really help. Very few have to be done in weeks ever as they can be prepped and so they can be made accessible to involving those more ill too by having those slower processes that involve qualified people who just need to spread things out.
So I think there is a difference between feedback if you assume someone got this dropped in their lap with a few days to do it
And my bigger question which is why so many years in aren’t bigger entities open to those who could stop it from being that and can see the upcoming issues and tactics but also the common messaging we need to be nailing and that can be planned for in blocks of collateral that can form the skeleton for these types of articles. If people start seeing these not as small tasks but things that should be being worked on year round with a team on the case not some awful committee ticking boxes but not giving more real headspace time than an individual on their own would.
Lots of these issues don’t really move that fast in our world and bacme who aren’t ill it turns out had five years to leisurely put together their battle plan and documents so why did the me/cfs community never get given that time to get an alternative that was better etc?
