United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

To be fair they let some of their more obedient patients turn up to do a poem or a song to the audience..

 

Great piece of investigation @bobbler

Walk and talk is a mental health therapy. Veterans have been doing this on an informal basis for years and years when they weren't getting access to any help for mental PTSD.

It's caught on with the civilian population a bit like the park runs, and now there's this The Walk and Talk Movement – The Walk and Talk Movement provides guidance on how local communities across the UK

Is this really appropriate for any ME/CFS patient who does not have anxiety or depression, which NICE states is not a mental health illness, and CBT must only be used to deal with any subsequent issues of anxiety and depression which may arise from any seriously debilitating health condition?

Those who are still trying to hold on to their jobs and probably on reduced hours, apart from all the activity management, mindfulness, form filling may have to include in their growing list of activities, this.

CYP the same, except substitute jobs for schoolwork.

'Feel' in control is not the same as 'being' in control, and this negotiation/collaboration is being done with people trained to coerce. I've had physio for an injury arising from an accident. Yes, this will hurt but you won't recover full use if you don't push through the pain.

I was re-watching this recently. Something old, something new, something borrowed, something blue: The true story of Gulf War Syndrome (gresham.ac.uk)

To understand where we are sometimes, it's useful to look back and see how far we've come. A few questions were allowed at the end and Prof Malcolm Hooper was one who asked a couple.

 

So... All the things ME robs us of, her company can give us back through

That is the most "jolly hockey sticks" way of describing CBT+GET I have ever heard.

This and the whole "NICEly" branding is the most patronising, paternalistic "we know best" approach possible.

I would be beyond incensed at this, but it is becoming clear that in the world of ME plus ça change, plus la meme chose no matter what we do.

God, this is frustrating. None so deaf as those who will not hear.

 

They have always travelled .
When my daughter failed to improve after 6 months the paediatrician suggested referral to specialist . When queried the specialist was E Crawley, who travels . I refused . When paediatrician asked why I asked if she had read any of her research. No further action taken.
The paediatrician was honest with us at the beginning, she did say not everyone gets better .
A mum in another area , with further input , was threatened with her daughter being fostered so her school attendance would improve. Tymes Trust were their salvation.
There was a messianic zeal to " save children" .

 

The very severely affected case In the news is in Lancashire. BACME list 2 services for Lancashire - one is called CENTRAL LANCASHIRE MOVING WELL ME/CFS SERVICE - that is only for the mild-moderate . I think that they have a theme going and it sums up what services they are delivering whilst failing to deliver the type of secondary care that others need. Whilst some might appreciate largely therapist support, before the 2007 the NICE guidelines & the NHS setting up its fatigue clinics AFAIU it was understood ,in 2002 chief medical officers report etc , that secondary care & specialist services were supposed to be medical & for severe and complex needs to be referred on for extra help. Today we have the opposite.

 

it seems they just are a bunch who cant think outside the behavioural model. Very old-school/fashioned underneath it all.

they can come up with different words in their imagination why it might be that their behaviour just needs fixing with behavioural training, vary how they sell the carrot and stick and pretend there is a clever model but they are cart before horse. Can only see the 'symptom' and think 'change that by acting as if it's bad behaviour or an aversion (again behavioural model)'

but just reminds me of those people who think eg autism they don't need to learn about just use a more polite term and carry on with the same trying to change their behaviour rather than do any learning themselves.

But then they'd have to learn the rest of the curriculum wouldn't they?

 

I wish they'd tell us what bodily systems are dysregulated...

...and how they know this is happening,

especially given that they don't appear to have read even the most rudimentary description of ME.

 

If only ....

 

Same for me. When I finished my six one to one sessions at my local CFS clinic they wrote to my GP stating that I had "successfully completed the course" but I hadn't improved at all and they never bothered to find out if I had either then or later on.
Their clinician had "successfully completed the course" is what they should have said which is really what this all about.

 

Thanks Kitty.

Going to plan so far

 

None of this is mental health strategy. Together or apart. It's neither mental health nor a strategy. This is leisure. Time off. Recreation.

And the more you look at mental health care and research in recent decades, the more the pattern becomes obvious: mental health has been redefined strictly as leisure, as therapeutic recreation in the right, optimized, amount. Which has enormous implications for all of society, for our obsession with work, for punitive social safety nets, for economic policies that force a huge % into poverty just so they don't have a choice but to do the worst jobs out there, and so on.

Recently I saw some survey about what MDs do for their mental health, and without much surprise it was literally all recreational. The only part that isn't necessarily strictly recreation was exercise, but as we've seen over the years, it's a distinction without a difference, as the entire field seems to be obsessed with finding the perfect exercise, one that people will enjoy and stick to. But they don't even take human nature into account, they seem to believe that if people find "the one" exercise that they enjoy, even if it's dancing, then they can stick to it 2-3 times per week for the rest of their lives. Which is not how humans behave at all. Most people crave some level of diversity, of variation, do not enjoy doing the same things over and over again. And certainly not if they feel they have no choice, if they're told "do this or you will feel bad". Tastes and preferences also change with time, as do the people we spend this time with.

If any of this were actually believed, and not some deeply flawed ideology to get people to work as much as possible by offsetting its drudgery with the right amount of therapeutic recreation, it would lead to loud calls for major shifts in how we expect people to live, how much we expect them to work, and especially the obvious conflict between the fact that leisure time has become fully equated with mental health, in societies that do everything to reduce leisure time, to make it as costly and punitive as possible. But of course the mental health experts demand no such thing. They advise no such thing. They don't even mention it. People are supposed to work as much as possible, be bound by punitive economic and social systems while at the same time dutifully find the optimized amount of therapeutic recreation that they then need to stick to like it's another job. It's completely perverse and self-defeating.

And there's some really twisted bit in the quote above, the idea that the "psychological benefits will be compounded". That doesn't even make sense, it's not how humans think or behave, and that it's coming from the profession supposedly dealing with psychology is pure insanity. They have no idea what they're doing over there.

 

the sad thing is... what a life she has, now if only they'd step back and help us to be able to get some medical care and research breakthroughs ie actual treatment then I think there are a load of us who'd just go off and do any of these without any of the rest. The fact we survive and are just kind and generous about others still being able to enjoy that also shows we don't have any particular mental issues.

The idea anyone needs the 'rehab' or 'behavioural' that they don't seem to want to admit is all they can offer therefore they stretch their brain imagining must be the issue just shows their attitude to listening to or knowing a single patient they've apparently had. Which is terribly psychologically harmful, but hey we've been tough through that too even though it should never happen to anyone and noone should have their truth rewritten.

by now they must be able to find a new gravy train to make money from and give us a tiny fighting chance of having these tiny things in life after all this time, they do realise that you can't cure an actual physical illness with behaviour

nope and I think they know it when the rest of the spiel, with many bullet points of justification is also based on the same blah.

which makes it big psychology because they are not at all properly assessing what people have matching and checking it works.

the fact this is a generic course seen as ‘generally something good for all’ is about the attitude now. And don’t bother whether it is mental health or physical even diagnosing properly - because apparently it will do


I think that the problem is bigger than this individual course but is exampled by this is almost the exact blueprint showing the issue with the whole service.

The person running this course isn't responsible for it someone with an energy-limiting condition is harmed by having been sent on it. But as soon as a group like BACME put it in a conference then all those who are responsible for referring people onto things should be culpable. So Julia Sands maybe not responsible but Jess Sands (Bavinton) seems to be repeating history here if she is trying to sell as a good idea something that she is conflicted with and would have a harmful component to many pwme.

I suspect the blag on her part is playing the 'mental health' card, but on that basis it is like someone being so non-diligent advising those with diabetes that instead of working out what might be nice and safe for their birthday, they just give them the business card for their family bakery.

It shouldn't just be used as a get out of jail free card to use social prescription type things to shove into 'treatments' but with people who don't have a professional certificate or license they can lose for causing harm for certain conditions.

A focus on social prescription or add-on kind of things rather than beginning with what the problem is - properly. Although in this case I suspect BACME still think that it's behavioural and a bit of cognitive or mental is great - certainly on some sort of sliding scale within their ranks. I think part of this is people who have a menu they don't want to expand, and 'norms' and orthodoxies meaning that ways of measuring things aren't improving.

That there are certain areas now that neither the nhs nor private do - not properly. And I can’t tell if the blag from the ‘professions’ - and to be clear the way they now habitually act they are not anymore hence the outsource to local groups with old men leading walks - started first where they gave up their pride and dignity and became charlatans (selling treatments harder than measuring which ones work for whom) or if those dumping people in/onto them came first.

I suspect it started with people 'reframing' the measures like sarah and gladwell , stuff like Chalder destroying psychology and mental health with a push to ‘transdiagnostics’ ie making it a useless non area thinking what a wheeze to change the measures and sell how undeserving those whose lives would be toileted by their actions was.

EDITED for length

 

And it appears they’ve persuaded RCP that’s ok

people are happy to harm us as long as the situation allows them to not have to face up to what they did or take responsibility for it

 

Sadly I think it will take a court case to establish legal precedent before this gravy train stops

 

the therapists who won't learn about the condition dead-headedly insisting they get to be the one planning someone's life intimately because they know better. It is just the madness of the mindset.