Discussion in 'Advocacy Projects and Campaigns' started by Trish, Jan 30, 2019.
"...It makes you wonder if there will soon come a time when all neurological patients – perhaps indeed patients of all kinds – will be expected to undergo the search for buried trauma – just in case..."
They should be looking at the real-time trauma they are inducing.
Bloody terrifying. And I have no bright ideas about how to convince ill people that their life's traumas are very likely not what's causing them to be sick.
I wish I understood what underlies the impulse to believe in that. Though again I get the thought that if science were better taught from grade school on up we might be less vulnerable to such nonsense. Although we know so little about the brain and it's functions that all this mind/body woo isn't likely to dissipate soon which is why MUS FII can flourish.
I have no doubt that the MUS project is intended to burst the riverbanks and flood medicine. However, I retain some of my initial scepticism. Note that the instance mentioned is of someone on an inpatient unit. That will be costing about £500 a day - £50,000 for three months. And more if the nice young graduate therapists really are being paid a decent wage.
Flagship projects like this have been built, closed, and risen from the ashes, for decades but they have never spread to widespread use - for obvious reasons.
What I agree looks likely is that sausage machine clinics with sub contracted therapists are likely to be commissioned all over the place. However, we are already seeing papers pointing out that the real results are probably lousy.
There may be a small number of people happy to have 'MUS' and sit on a special ward but I suspect they are rather heavily selected.
I may be proved wrong but I still see this project containing the seeds of its own destruction. There is very rarely anything new under the sun and we have had projects like this before come in with a bang and go out with a whimper.
I totally agree.
There was a program on MUS (called SOLK in the Netherlands) on the television here. It was about an inpatient SOLK clinic, it focused on pain-patients. There were some very enthusiastic reactions from patients and therapists. It was a 6 month program, with lots of talking and things like painting and music therapy. I was pretty shocked that that was covered by healthcare actually, how ridiculously expensive is this? The one person they followed was a pain patient, she was there for 6 months and her pain was not gone after that, but she was happy with the therapy anyway, because she learned "how to deal with the pain".
I guess the people that go to these places have a lot of other problems in their life (and I absolutely don't judge them for going to a place like this, I just don't think they go there for their MUS). There would be no way that I would leave my partner and (very limited, but otherwise very nice) life to live in a clinic for 6 months, just to paint and listen to music
In the alternative therapy world, this is actually starting to be very popular. I had a wonderful physiotherapist, who suddenly did some course in trauma that causes pain (based on the theory of Sarno). I can not go there anymore, because he wants me to do a very long and expensive therapy, because he is convinced that I will be better after 5 weeks It was all dressed in semi-scientific reasoning, so it was hard to debunk it in our conversation.
So annoying, it was actually a really good physiotherapist, so I really don't get why he went this way.
I don't paint! I knew I was doing something wrong.
You have an inside long view so you are no doubt right. The problem that still exists as I see it is that, as you point out, they come to nothing after a while-- but then they reinvent themselves and the whole thing starts all over. It's a bit like whack -a-mole. We can never be truly rid of them.
My extremely simplistic take is MUS is mainly an issue around the ethos it promotes among GPs to avoid diagnosis of conditions and deal with symptoms only. As I was directly told by a young GP we don’t find it helpful to give that diagnosis- CFS - it’s best to treat the symptoms. In my opinion this promotes seeing the thing that is obvious - the insomnia, sore throat, fatigue or whatever the patient comes with on that day and not going beyond that widget. This lends itself to simplistic approaches like SSRIs, tricyclics and CBT as the tick in those boxes.
As the Agenda on ME/CFS is moving away from BPS control FND seems like a good option for BPS “specialist”people to keep patients (and associated resources) on their patch by rediagnosis
Yes, but I think it is important to note that 'FND' is a rare problem. I came across maybe half a dozen cases in my career. I had colleagues who were making 'MUS' type diagnoses several times a week. If MUS represents 10-20% of GP consultations as they claim then that has nothing to do with FND, which a GP will see once every five years.
What is genuine FND like?
Sure we can. If there's no money to be made from MUS diagnoses then they will stop inventing these diagnoses. That can be achieved by demanding that clinics must not offer treatments that haven't passed a well designed RCT.
Non-epileptic 'seizures' come under FND. The other main group I am aware of are abnormal movements, often called dyskinesias - quite often shaking movements. I used to see shaking movement problems in association with something called algodystrophy, where there is severe local limb pain with local calcium loss from bone.
I agree. The problem will persist as long as it is convenient for doctors to offload patients on to 'cheap' therapies and get them out of their clinics. And those therapies will persist as long as we have the current legal and administrative anomaly that neither licensing nor NICE require therapist-delivered treatments to be based on the reliable evidence that is needed to license or recommend a drug treatment. I thin a key issue for the Guidelines committee is to flag this anomaly up as a general problem. Part of medicine has not moved into the second half of the twentieth century.
I hope you are right and that it destroys itself before it destroys too many 'patients'.
Well, it finally loaded on my slow connection and I have read it.
I am horrified by:
I totally agree @Snowdrop
The wider damage these constructs do is in diverting attention, time and dollars away from other potentially productive avenues for ME — while yet another rabbit hole is explored.
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