UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

By being so absurdly vague, they're missing a golden opportunity to estimate what proportion of pwME/CFS need support with essential daily living tasks but are having to manage without it. Those people may be at risk of poor nutrition, unsafe living conditions, injury from falls, further deterioration in their severity, etc.

If that all-too-familiar struggle were made visible via a project like this, it should be a good advocacy angle for charities like the MEA.

It wouldn't be un-useful when it comes to arguing for provision of actual healthcare for pwME/CFS, either.

 

I despair at how the extreme vulnerability of people with ME who don’t have money and a dedicated family capable of fully supporting their physical existence, is just vagueness off screen somewhere far far away.

This something really useful charities could point to. Like the proper poverty ones do. Hit harder. I really think that its not taken seriously or prioritised, is because the charities are run by relatively financially comfortable professionals and middle class people who happened upon their own misfortune in life via a connection to ME rather than the sharper edges of capitalism and so they don’t have a background of political struggle for survival behind them.

Charities do acknowledge that people with ME struggle for material survival and they do produce welfare guides to help people for material support.

But I don’t think these charity leaders have ever been prepared to face up to and give sustained attention to the dangers for any person with ME who doesn’t have the cognitive or physical capacity to fight for life in these circumstances. These cases are bound to be a whole lot more common than cases of severe illness where a dedicated parent or partner is available and ready to give 24 hour care and keep the partner or child housed and fed.

I wonder if charity leaders also really haven’t been keeping up with the changes in available services over the last two and a half decades. Like where do they think a carer can be found nowadays or an accessible flat…

I have never been able to understand why these decision makers think saying a few words about how they know things ‘can be really difficult’ is enough.

 

That’s Trish. I have t read it properly yet as it’s already hacked me right off. I do not “overdo it” I am forced to do more than I can comfortably manage.

 

With other conditions do charities eventually get funds from non-sufferers to support those who aren’t the can pay membership and interact demographic but are what I dread to imagine given enough might have GPs who are hostile and not be believed by anyone close to them.

the load with taking that situation from desperate to sustainable is so huge because at every single service and stage there is doubt and huge communication issues prevarication and then turns out nothing on offer ‘fir you’

but because no big charity is holding someone’s hand continually (or maybe they are but just have written it down) we dont have the ‘blueprint’ (service management term - and you put in ‘moments of truth’) showing where each of these services falls apart and the pitfalls are. It’s done subtly often so hard to get across the attrition being used to stop access hitting us particularly hard without that surveillance

and that would be important for targeting change and working out what would be needed. There’s almost the issue of taking someone’s energy and starting help then not being able to finish the job or do it properly being risky as to whether you leave people worse off too. And people can get utterly buried by so many things to be sorted and peeled off that working out what someone could help with in an hour slot doesn’t work. Plus the issue of us having no infrastructure to hand back to once x has been sorted because things are so crap that it’s not just setting them up with x service and alls forever well.

But the too difficult box makes it even more urgent. And the blueprint is the start. Then the landscape could look at the tasks/need within that and start the mission . ATM I’d say getting somewhere like every main advocacy org others can access aware of what me/cfs actually is, and the key issues. Or helping to like other conditions have set up local specific advocacy that can strongly do all the touch points. The risk there is getting good people who also don’t want to revert to old fatigue understanding and ‘pat in the head’ help.

I often think a tv programme about ME/CFS that focuses not on the patient but on the bigotry they get daily (and limitations/obstructions they face daily with trying to access what should be or could be accessible) or the camera walking in their shoes and pointing the camera at those they see rather than them - having explained the energy limitation issue - would be something I’d like to see. To show it up as bigotry and not just the ‘little things cos that person was also busy and his were they to know’ excuses but the ongoing , invited by the misinformation of the bps cfs mis sell of ‘a bit of fatigue’ creates something far more huge than micro-aggression/ everyday sexism but a huge block on accessing life and a message you aren’t welcome

 

@bobbler I guess I am thinking that maybe charities want to show a positive picture and not scare people but that leads to taking the edge off the truth of how hard it is to survive with ME since most people can’t support themselves financially.

There are few safety nets in what’s left of a diminished welfare state. I think it’s important to take account of this wider context, as to do so would leave less room to criticise patients for not pacing hard enough.

It should be understood that people with low income or doing hourly wage labour people not on salaried work, have to go to work sick, don’t get sickness pay just work until they drop. That’s how it is now. Let’s start from there.

Rather than getting people to rate how well they managed to not get sicker each week month year. It should be about rating availability and accessibility of vital support, not ability of sufferers to just somehow make do and not make themselves sicker.

 

Yep. And this tool could contribute evidence that we don't currently have, if it recognised that what it calls 'overdoing it' includes the very basics of living. Which means there's a cohort of people who have no choice but to invoke PEM, suffer the consequences, and risk exacerbating their ME/CFS. Some of them are severely affected, but not all; moderately affected people who live alone without support may well fall into the category. Currently we don't even know how many of them there are, or what proportion of the total they represent.

 

Whataboutery. The effort of having to explain from scratch to each person you interact with, what your illness is and what your needs are, just for them to start a debate about it.

 

Agreed. Telling people to do less when they are in a different situation to you and you aren’t giving their boss or family a good talking to that things will only get worse if they don’t give way now so they stand a fighting chance is the horrific plight of most.

I’ve always been sceptical of the way ‘pacing’ is sold. Like it’s down to the ill person to prevent when pacing doesn’t prevent anything and really the message is to let people be within their bodies weird limits (not to coach the person to behave) which for some no matter what they do might be vast difference between days ie do we know four half days is better than two full and being able to sleep fir the other two long term?

I think the charities needs a guide for occupational health as it does for anaesthesists to begin. Anything that can emphasise genuine energy SAVING adjustments (like parking spaces, work from home) and equipment- so it’s less down to someone holding their line manager each time to an awkward situation when it’s peak time etc. but some things that aren’t pulling on a relationship

I think the hard but is some of those we might only have recently some of us admitted due to the invisible disability that some of them apply to us, but I don’t know what it’s like ‘out there’

also wonder whether there is room for an ambulant wheelchair (and the rest needed to make them usable) that reclines charity and campaign. I remember seeing those fir the first time six years ago and thinking that’s the first thing that might have helped hectic the recline bit.

That wouldn’t be the sun total of what would help people but at least that is something other than advice that people can go broke (and get worse) or get worse then somehow feel responsible for ‘not making the right choice’ when even if they had choices that’s not all anyway.

If people are in terrible housing they will know the poor rest doesn’t help. Long commutes are impossible and finding a job with different hours of it isn’t a pro rats pay cut mightnt be less energy due to that and the person mightnt be well enough to do interviews anyway.

Of course i then worry about how easily made bigoted the public can be if it was a ‘some who need a wheelchair can walk sometimes’ and the messaging wasn’t nailed. And how cruel people are eg why a charity changed its name to scope.

 

Could we also recognise that anyone who needs and uses NHS medical care will be ' overdoing ' it? There is no choice because there is no care at home now even for winter flu vacc by district nurse. If you need to see a Consultant then you will need to prepare for several days and recover for several days. You will need to go to the hospital you are sent to. I have two appointments most weeks. I am always 'overdoing' it. No choice and I am fortunate.

 

Absolutely @Binkie4 and @Sean. So much capacity will have been already exhausted by the time a person becomes a patient in the clinic where they fill out this paperwork.

Firstly physically getting ready travelling and navigation of the building and then sitting and speaking.

But probably also much starting from scratch persuading doctors that there is any need for medical care at all. It’s utterly draining.

Even medical care arrangements at home as rare as they are are hard to organise and recover from do it will likely be a person feeling very unwell and un or under supported who sits in front of these forms.

 

I can feel and share the frustration and anger behind everyone’s comments. You’ve expressed things so well. I pulled out a few quotes which I think sum it up for me.

Above all it’s not patients than need monitoring or educating by healthcare professionals but the reverse. Because right now they fail at the first hurdle of ‘do no harm’. I don’t think this is deliberate but it does seem impossible for us to individually overcome. Most of us have tried.

I wish there was a PROMS or whatever for the NHS and other services. There is so much that could be done to make things easier for us. To stop making us worse. Really simple things to remove barriers. But we need something to measure their performance.

 

Yes @hotblack what you say and these quotes from @MrMagoo, we can’t overcome medical prejudices against us (and patients more generally tbh) or societies demands that most of us sell our labour no matter our physical condition, nor can we manage to maintain our social responsibilities to those we care for, nor can we participate in community life, nor can we care for our own bodies whilst being under unrelenting pressure to get ourselves well and do all the rest, simply by tweaking our self management techniques or monitoring ourselves more intensively. We require social and medical support. That’s it.

We don’t need to provide extra information about ourselves that can be used to reinforce the institution idea that the current bleak state of things has much to do with us. It has nothing to do with us.

 

They can’t ask 1. As they don’t agree with using wearable tech. They think they are going to provide 2 and 3.

No HCP is going to determine what my “energy envelope” is, the last time anyone tried to was in CBT and look how that worked out. Also I hate the term energy envelope what has an envelope got to do with anything? It’s a bandwidth.

 

Yes.

A coping strategy, for them.

 

And who cares what ticks are in the boxes? The subsequent advice would still be “pace better” and maybe “speak to Adult Services” (who will not provide help, but the assessment takes so long you will have been safely discharged from this clinician before you find that out)