MUST Fight MUS

I was just posting thoughts in another thread about illnesses banding together to get things done.

It's clear BPS people have been deliberately using their significant PR arms and networking to pepper the world with the MUS fantasy. We need to nip this in the bud before it gains any more traction!!!!

There are so many other illnesses that will be devastatingly affected by this bullshit, like Mito disease, Late-stage Lyme, Fibro, MCAS, CIRS/Biotoxin Illness, and on and on.

Would it not be prudent to come together and call this out for the garbage it is in a loud and relentless way?

Professionals are falling for it the way they fell for "refrigerator mothers" in the early 80s.
We can't let this go undisputed, and without a very public flaying.

I am not good at organising etc, but please let's brainstorm on how to put MUS away forever.

 

We absolutely must. I think both this forum and 'the other one' have some quite detailed 'MUS' posts already.

 

@Trish do you have any info on this?

 

Maybe like a full-page spread in multiple high-profile newspapers that is half comprised of signatories from huge organizations that value actual science and actual medicine. Letters appealing to all the world's medical councils and science orgs, with the same massive list of signing agencies from as many organic diseases as can be mustered.

We need to be more organised and more dogged than they are.

 

Great advocacy project @Allele. And it can have many catchy names:

MUST FIGHT MUS
MUS MUST GO
MUST MUTE MUS
NO MORE MUS
US vs MUS

 

I did make a few initial moves last year to try to set up a website with a few people with other conditions that get lumped together as MUS, and misdiagnosed. The idea was to try to educate doctors. We didn't get anywhere - we were all too sick and didn't have the resources to make it big enough to have any real impact, so it was abandoned.

Looking back it was unrealistic to try to do anything without a strong organisation with resources.

I think the only way we can fight being lumped into the dreadful MUS dustbin is to keep pushing on the political front, NICE guidelines, supporting David Tuller and others work on debunking PACE, and getting more biomedical research and good education for doctors. There is lots of good stuff happening, which makes it hugely frustrating seeing NHS funds being wasted on MUS junk therapy.

I have no answers.

 

Perhaps it would be worth contacting other patient groups/organizations and clubbing together with them to fight it?

ETA crossed posts with @Trish . Thanks for looking into this. It's typical isn't it? The sick and vulnerable fighting to defend themselves against the very people who are supposed to protect and help them.

 

i was REALLY REALLY pleased when an ms organization in the uk fought for us and said we needed access to their hyperbaric o2 machines. i hope i remember this correctly. this made me feel really really good.

ms is an accepted disease. they fought for us. this means smoething!

 

This may not be the right thread, but may be of interest
https://dpac.uk.net/2018/02/protest-against-iapt-therapies/

 

From what I've learned recently, I fear that we've been fiddling with PACE etc while Rome burned around us.

We have no choice but to immediately turn our attention to MUS and use all our means to expose and combat it, time is running out.

How much worse can it get in the UK?

Very much worse I'm afraid.

 

PACE is the engine that drives the perception of ME/CFS as psychogenic and makes us easy to shove in the MUS binbag. I think the attention on PACE is more than justified and that if PACE falls, it might be the start of bringing down the whole MUS edifice.

 

started a new thread on this:
https://www.s4me.info/threads/protest-against-iapt-therapies-march-21st-2018.2630/

 

To continue with the analogy, PACE may be our Pudding Lane, but the fire is now burning all around us and we're still trying to put the PACE fire out. Yes, the attention on PACE is more than justified, but the BPS School has moved on and engulfed us with MUS and, in England, with IAPT.

 

Unless we put the fire out in Pudding Lane, we'll be dead and won't be able to help fight the fire in the rest of London...

But maybe I just broke the elastic on that analogy.

In my view, this is a war and PACE is a battle within that that war. You do right to point out the war. Some of us will need to fight the PACE battle and some will need to address the wider war.

 

Slightly different analogy; oil well fire.........you can keep trying to put out the fires from all the oil spewing all around but until you shut off the well.............

 

I dunno... This sods just morph their ideas smoothly on and let's not forget they don't have to worry about reality, or truth etc.

We do have to fight PACE or at least the philosphies that spawned it. We can't afford to ignore the MUS battle while we do it though.

It strikes me that some of the folk who will be targeted by the MUS label have no idea how bad this is going to be. They may have previously been well treated and simply think it's going to be a supportive adjunct treatment.

How can we reach out to some of these other patient groups and inform them? Bearing in mind that some of them would not want to be associated with the type of malingering shirkers they have always been told we are.

Boy, wont they get a shock in that therapist's waiting room!

 

"PACE is the engine that drives the perception of ME/CFS as psychogenic and makes us easy to shove in the MUS binbag."


In my opinion the PACE battle has now most definitely been won, thanks to the valiant effort of lots of people. There may be a few embers still smouldering and worthy of attention but our backs are now getting very warm indeed from the MUS fire that we've been blissfully ignoring. Personally, I'd rather not get burnt alive.

We have already been shoved in that MUS binbag whether we like it or not. They are no longer using PACE to justify this move, the argument is now an economic one based on how much the NHS will save if they can expunge MUS resource wasters, including CFS/ME sufferers, via the IAPT programme (thankfully, for me, only in England at present). It isn't about CFS/ME any longer, this is a national transformation of healthcare, in fact a political revolution. Just a quick look at the new list of stakeholders for the NICE review and it is clear as day that this has already been stitched up. They will no doubt fix it that the evidence that they are so busily collecting from IAPT for CFS/ME patients will be more than enough to ensure that the NICE Guidelines remain exactly the same as they are (or are even more damaging), especially when it is combined with the evidence from the Cochrane lot , Chronic Fatigue Research Unit at King's College London etc. We can't leave this to a 2020 NICE review behind closed doors. By then all designated CFS/ME clinics will have disappeared and the pathway for all CFS/ME patients will be via IAPT with CBT and perhaps GET too. Those who don't comply will be deemed to be CBT-resistant and will lose any benefits they have; all will be no doubt be labelled as psychosomatic so that they can't get any decent NHS care anywhere else for any other problems they may have.

 

Add to all this the fact that as we speak the UK NHS is forwarding the worldwide trend of corporatizing health services, which is a gigantic motivation for instantiating MUS. We can't let this be one tiny David against a many-headed Goliath. There are so many patient groups worldwide that could get behind exposing the whole way psych has morphed/is positioning itself further into state control of individuals' agency.

 

I see PACE as a cornerstone supporting other psych/MUS ideas.
Also as a wall behind which the Psychs are hiding whilst thinking up more income generating ideas.

PACE needs to be shot to pieces/annihilated/exposed for what it is and its inventors/perpetrators exposed.

As long as PACE is around in the UK, minimal progress will be made.

The reanalysed data needs investigating by NICE and/or others.
The rest of the data needs to be exposed and evaluated by independent scientists, not psych cronies.