United Kingdom - Suffolk and North East Essex ME/CFS services

Thanks Daisy. We are hard nuts to crack.
Jointly, an impossible task for opposition!
But we have been blessed with some exceptionally committed Transformation Commissioning and Contract staff.
Lovely people who have given us respect, hope and empowered us to keep fighting.
They are the stars in all this. J, N & A.
Recently, the ICB have listened and have taken us seriously too.
So fingers crossed for a good committed provider interest!

 

https://healthwatchsuffolk.co.uk/ne...r-new-combined-post-viral-condition-services/

 

'Combined post viral condition services'

That looks pretty unhelpful. It asks people whether they have ME or CFS, and claims that both are post-viral conditions (which they may not be in any meaningful sense) suggesting that whoever set it up doesn't even know what the condition is.

It asks a lot of questions about what people have found helpful but that isn't a way to plan a service since people are not necessarily to know whether things are helpful or not. They will know if they are presented in a friendly way but for all they know they may have been made worse.

I guess we have to accept that the people running this simply have no idea and just hope that some useful support for severe patients might come out of it?

 

Your guess is correct.

As you would expect, our complaints fell on deaf ears.....

They did the survey without consulting or co producing..
They made no attempt to align it with the one done for this purpose in 2022 thus rendering results incompatible potentially......

 

A problem with that is thinking of pacing in terms of a technique, rather than very generic convalescence advice. Pacing is not a technique. It doesn't make people better. It simply avoids us getting worse in some ways, without guaranteeing it.

Do people undergoing severe illness and body-harming treatments like cancer need trained therapists to teach them the technique of not doing much while they rest? Of course not. No one even thinks about that (ignoring the identical junk attempts with cancer-related fatigue, it's just one example anyway). They need people to assist in making it possible. Family, if possible. Otherwise they need help at home. Real, tangible, physical help involving hands and feet and so on. Hours per week, not just here and there.

And this is the whole difference here, in terms of attitudes and intent. It's like a food delivery service for people who can't cook, but we're diverted to the grocery delivery service, which only leaves them at the door. Doing that to a cancer patient convalescing hard from chemotherapy would not be considered especially useful unless they have someone able to do all the other steps leading to a meal that isn't just ready to eat, but probably needs significant adjustments in terms of diet, and likely have to be assisted in eating it. And that's just food.

There is nothing to teach anyone about convalescing. Everyone can do this with their eyes closed. It's everything else we can't do. Where everything else is basically everything in daily life. It's true that there is nothing to recommend here, just as there is basically nothing to recommend to someone who has broken all their bones and is in a full-body cast for months. It's not realistic to expect someone like this to live alone and do all the normal activities of daily living using some 'technique'. They need help, will not survive it otherwise. No one would ever think of how to teach such a person how to do this. But with us they do, because there's a readjustment away from reality and onto fantasy land stuff.

No therapists needed here. Everything that exists around this only exists to make up for a failed understanding. It's the equivalent of "turn on the heater to compensate for the A/C making it far too cold in 40C weather". It's just grossly illogical and ignorant. It makes no sense to make up an evidence base around anything this ridiculous.

 

and instead many did the opposite and put up misinformation that meant those closest to them believed they needed to not be sleeping during the day or resting. And that having a go at them because they must have boom-and-busted or in some way it was their choices 'in how they managed themselves' that were causing everyone to have to put up with this.

I'm also afraid that my experience is I suspect there are very few (old staff) who would be able to stick within the bounds of the clear message listen to your body, and that really understand the issue is cumulative exertion, PEM and at best energy conservation in a world that isn't forgiving to that. Instead there will just be another programme suggesting to everyone if only the person stuck to their micro-managed time-table their behaviour shouldn't be weird. When that isn't how the illness works at all I suspect. Some people are going to have to limp through two days where they get certain things done or get to see others, and spend four flat on their back or with their sleep all over the place from it. And it isn't their fault. I really think that most people don't understand this but particularly those with this mindset.

And such courses delivered in such ways have the potential for great harm just for doing this. Years and years, and it never really healing or going away of family members suspecting it's just a bit of 'how they manage it' because 'we all have something' and not acknowledging that the argument they made of it ironically was what put them through2 weeks of the PEM and sleep all over the place in the first place.

Because hey, it isn't treated as a proper illness, and all these people can do is suggest things 'that work' and things only work for the very mildest. Because once you've lost what 20% (maybe more if you've a more buffered life housing, finances, those around you wise due to the impact of noise and exertion like can you afford deliveries or have to drag yourself on a long commute vs able to ask for home working or part time) well what does that equate to in 'disposable' energy. And what gets taken from others, unplanned, uncontrollable. And what do human beings need in their lives. But which need to be adapted because it isn't enjoying human contact and being not lonely if you end up being made ill and having the mick taken out of you inadvertently by a phone call or being dragged to a noisy coffee shop or what not.

These people don't do the maths. Because they do this [pseudo CBT] because they themselves believe in the reframing reality to 'positive' for their own reasons often (I can see very well why it works for those not ill who want to put themselves first in live and reframe others problems as less). Which means their mind is programmed to not see the full 'bill' of everything or the full 'deficit' despite the tenacity of the person in front of them. It's a really inappropriate personality type to have near someone new to the illness.

Optimistic is someone working out how you can really adjust things early and with support to try and have a genuinely liveable life (walk to office from car/bus giving someone back 'being able to watch TV', shower chair). And make the most of planning not ducking reality so things get worse and worse and windows are missed with no help. The above is just silencing by others who want the issue to 'just disappear if you ignore it'. And I'd say that's the most accurate description of having ME. Just dropping through the floor as others watch you saying it won't happen so doing nothing and then hating you a bit more and ignoring you a bit more as you become less and the next thing you will lose unless someone helps comes up and the same ignoring happens again. Often you've done all the work despite its toll just to try and save yourself this devastating further drop and just need back-up to stand next to you and everyone whistles. That's the blatant misinformation and bigotry showing its impact.

And yes that is completely different than for what I've seen for almost everyone else. Partly because the instruction manual that has been put out gives all the even emergency resources a red herring. And undermines everyone. Puts question marks about us. And those aren't coincidences to this. Pacing in behavioural hands is still behavioural.

It's not telling people that when you say you need a lift to an appointment or work because you feel that ill to help you, it's suggesting that you having to ask is a deficiency.

It's a deliberate distraction from symptoms stopping people into 'overcomeable'. What happens when someone is making decisions about 'can' vs the truth of ME/CFS which is choosing because if you worked 4 days in the office you would have no social life and no chance of a future all others assume for themselves like family or partners. Because all you'd be is in bed and pain the rest of the time. Then get slowly iller with no safetynet and no family or friends as you age.

These courses don't challenge any of these 'practitioners' to understand and learn about these realities, or about the nuances. That people sometimes also just get iller. Sure newbies can't easily process it all if 'worst case' is thrown in their face either. But positive is someone feeling like help is on the way, like something will be a bit more doable and them understood by those around them, like the ends come nearer to meeting energy-wise.

I don't think these people come near to understanding that energy-limiting illness is closer to financial, with all the 'spiralling debt' cliches. and because of the all-encompassing everything you do including think costs something and nothing like their mindset encapsulation of 'whether it is happy or sad matters'. Having someone telling you to think happy thoughts when you need them to sign off something time-limited that will stop you financially or physically falling to a new low , and that could have taken the same amount of time and energy as their sing-song to help with but they chose not to - is the most heart-breaking experience of loneliness and not existing. And that's what they cause.