Care and Support Plan template free to download, Action for ME

Yes I think symptom management is used as a term in many chronic conditions?
And it establishes that the symptoms exist, if they didn’t then why would you manage them?

 

sorry to be a pain but I think symptom management has been one of ‘original’ con phrases . It sounds so logical doesn’t it to be able to avoid the sticking point of the illness NAME but surely we agree on the proof eg blood tests and symptoms that can’t be denied. But I got conned there very badly. It’s disgusting. Because it’s just lying snd that offends me more than the offer no help/harm is the lying to themselves‘it’s help’or kind and not just bigotry. Then at least the enablers would have to make a conscious choice about themselves snd what they are offering.

like suggesting visualising away pain and reducing naps to improve sleep based on suggesting GPs can just focus on this and separate them from the cause being PEM and being ME

it’s a vicious circle thryve created by co opting the ‘general’ (functional or MUS = this tripe) as well as the specific.

I’m sorry but the sidesteps we suggest need to be much more precise and we do need campaigns to hold our ground on the vocab/does what it says on the ti terms we do develop and then we’ve got to not be soft in calling out when people deliberately try and attack them to make those ambiguous

 

Where does it end though? They can twist any words or meaning.

 

well this one is definitely one to avoid sadly.
You’d think a ‘symptom’ for which you had blood tests if a biopsy showing an issue would mean you were on the same page as to what ‘treating it’ would mean.

it needs a solid campaign to out this one because yes it’s a straight lie and deliberate mislead. For a Gp to be told to say this phrase of 'treat the symptoms' when secretly mean CBT (because it's CFS after all or something) when the patient is thinking why are all my joints aching then or have something that isn't even necessarily ME-related.

I think we need to knock out all the nonsense film flam ‘therapies’ offered because that’s what some prefer to offer as a job vs writing letters about adjustments and the awkwardness of that vs their new skill from a 2 day course on gongs or reiki or just using their ‘knowledge’ from being a parent and their innate manner of getting their kids to bed etc


Don’t get me wrong I think this thread getting all this out is so very important so we know the issue and hurdles we are dealing with - and I agree it’s a basic we need to reclaim medium term (just wouldn’t recommend it to most right now as they’ll be sent off for sleep hygiene for healthy people and other wellness things for healthy people right now under a claim that’s ’treating symptoms’ due to all the old initiatives co-opting these basic terms).

because yes just like we can’t just pick another name for the illness without some branding it with playground rumour stuff we are going to need to work out the terms that we need, how they can be as specific as they can and then work on reclaiming them AND showing up the ‘alternative sell’ as not just a con but harmful and bigotry leading back to that harmful paradigm which the new guidelines technically outlaws (with its ‘in spirit’ phrase).

 

Pinning my hopes on Decode ME

 

Just been trying to distil what managing ME actually involves—what the verb is—and I think it's waiting.

It's what I spend most of my time doing.

I'm not sure how to fill out and communicate all that implies, but (for me at least) it's the essence of it. And I have to do it, there's no alternative.

 

I think you are right though. And this is absolutely where taking this issue seriously and focusing on example care plans for actual medical professionals with input from clinicians and good HCPs who know their stuff on adjustments could be very important to make headway. And symptoms, and properly treating them in a way that is relevant to pwme should absolutely be on there. SO it can't be suggested to CBT your fatigue and pain and here's a generic sleep hygiene course (and say its OK because its courses for those) as per some generic pathway.

I mean the fact we need something like this because there is so little actual medical care says it all really. And I assume no clinician can write things in without seeing the person. So effectively it shows up a thing about 'rights'. We can only ask for things that the specific professional-type dumped on us could/would deliver? And these tend to not match the codnition or the needs of it at best, and undermines it even. And if you list a symptom then the approach offered ends up being counter-intuitive to the new guideline and/or the condition.

Sleep however is one of the things that is very opposite, at least in a certain proportion of pwme, to all the generic hygiene assumptions due to it being linked to the nature of ME/CFS (PEM and needing to rest/sleep off a crash and so on) - so there are certain things that can't be separated from a good definition of the condition.

SO there is something interesting here that if it was an experiment to see what this flagged up, this is certainly revealing and making us think on. What should be the basics that pwme should be able to access and have written down in these if they were genuine documents that would be followed etc. And what is the gap 'backwards' stopping some of those needs from being written down.

@Kitty has some good posts along these lines, and I'm curious to see what the equivalent is for other serious conditions and what is written and in what (is it letters from clinicians/clinics or certain pathways or extra offerings?)

It does almost feel like the start of a way to communicate the issue in a campaign. To take a straightforward example or two and what is straightforwardly actually needed. Then putting alongside the 'and we've got this instead'... still. Then comparing it to the phrase on 'no treatment based on the paradigm of false beliefs or deconditioning' and compare and contrast how that really meant any made-up tosh inferring it wasn't straightforward medical stuff but a made-up weaponising of mental health insinuations to claim the behaviourists' supply-led 'offering' has worth based on patients' not knowing their own mind/body.... apparently, still, but apparently in a different way with a different name covering up that one.

 

People are already shocked that I don’t have a consultant. Or an annual review. By people, I mean friends with MS, or Cancer. Imagine if they knew that the care and support plan, which they have themselves, one of the major ME charities acknowledges thousands of pwME cannot get anyone medical to complete one for them and are recommending patients write it for themselves.

No bed in the NHS anywhere
No services for pw S and VS ME in the UK
Many ME/CFS clinics not consultant led, few pwME will ever see a Consultant at a clinic
Discharged from clinic usually in a year or less, back to GP
Write your own Care and Support Plan annually for medical and social services and update on your condition

 

Great summary .
Worth a few social media posts .

 

On it. You made some very good points

https://twitter.com/user/status/1828321474022682682

 

Just leaving this screenshot here ....

 

thats a great tweet, can I suggest an edit though?

At the moment, it says "how many other conditions dont" & then the list underneath...

But the bottom bullet point (which is a 'do' have rather than a 'dont'), isnt differentiated.
So it currently reads as if we dont have interactions with HCPs who ask 'whats that' etc.

We all know what you mean, but those who dont already understand the situation may not

 

Yes...I spotted that,but you can't edit tweets and it is getting s LOT of interactions

 

ahh, didnt realise you couldnt edit. lol good jub i not on twitter i am always having to edit!

Obviously doesnt matter, glad its getting lots of responses

 

Well done @JemPD its got a bit of a wave going!

 

you mean @JellyBabyKid

 

In my defence I’m very tired! Sorry both

 

Moved posts

JUst to come back to this one, because there is a somewhat specific and succinct point of a very important thing to add to the list of what needs to be transformed for ME care:

The idea of 'behaviour' needs to be detoxed out of ME care and ME staff. I'd actually like to start calling it it's own 'ogyny' label. Because it is a manipulation and deliberate re-framing of when people are talked about or listened to making sure the facts aren't heard and are re-envisaged. And of course it is wrong and misleading and has led to the utterly terrible treatment we've suffered and the reason the whole subject hasn't moved on. It has also been the cause of huge harm.

All these subtle and not subtle tropes and messages need to be called out and de-toxed because they are feeding and perpetuating what we see all over the place.

To put it bluntly: the behaviourists have a behaviour issue, that noone is calling out due to their tactics (acting faux offended) and the target being generally the most vulnerable. But that paradigm and type of staff no longer should have any place in ME/CFS, and due to the history of it needs active action to remove its tendrels affecting our lives and interfering with any treatment or support.

Of course they want half-measures and little change. But the old tropey harmful 'guidelines' caused a huge amount of problems and need some black and white lines to be drawn on what is unacceptable to even begin giving people their rights as human being back. And the start of that is calling out the crap where people use old aggressions as an excuse in themselves to leave 'less bad aggressions' in as justifiable, instead of noting that means we need strong messaging calling out that any misunderstanding along those lines is now unacceptable.

They also don't seem to want to accept that their 'general' doing this speak to people like children approach was developed off the back of debunked research and ideas burdened onto pwme then spread under the guise and fake claims of 'MUS' and 'functional' and whatever other trend word. So those need kicking out too, because they never worked for anyone. So dumping pwme under the same old claiming its OK because it 'general' not specific means all of that needs sorting.



Describing how PEM affects people's sleep and debility and pain in terms of 'behaviour' - when normal medics would ask about eg how is your sleep quality, is the pain changing or affecting that and wouldn't dream of having someone with something else being assumed to just not be behaving right and needing some training in it. People who've learned something by rote and want to offer what they want to offer and 'make those people fit it'.


Terming it 'help' is the classic. Whilst refusing to offer help of the type we do need when we need it - or even ask us all as a starting point BTW! - but imposing what they want to offer on us and telling us it's that. A lot of the nonsense on these plans are about telling others 'who we are' which is both inaccurate and is suggesting things which aren't priorities for us, but sure as heck relate to suggesting eg demand to GPs who sit on a CCG/ICB to sign off more of that stuff. It's a vicious circle.

We don't want money spent on mindfulness over functional support with forms or adjustments, we'd rather not being stressed by tasks we can't complete due to having no support then told it's our attitude. Thanks. And others we need to hear our symptoms being suggested we'd benefit from therapies to help us 'keep calm'.

We want a form explaining what the condition really is. Consistently, so the misinformation gets slowly dissipated. A really good PEM description a la Workwell on everyone's plan could indeed work well from the advertising perspective of getting the penny-drop through. And we all know these people are the ones who one day might be involved with voting on what gets funded or not.

And I'd quite like at last these things to acknowledge I'm as straightforward, kind and objective as a person gets. You know 'who I am', I deserve to have that back please, without others being allowed to suggest nonsense that's all about them inferring anything else.

We have to desperately search for advocacy just to fight against the yelling telling us who we are and what we want and need. It's outrageous. And yes it is against informed consent because the very idea of behaviourism is removing the idea we deserve autonomy because 'they think they know better' based on suggesting and believing we 'lack insight', when turns out those are their false beliefs. But accept no accountability when the consequences time after time prove that is nonsense.