Guidance for commissioners of services for people with medically unexplained symptoms - 2017

And their carers. Husband cut his hours for the last few (maybe 4?) years of his working life to look after me, so paid less tax. Of course employer saved there, as he got less pension from them.

 

That's just the standard length of time quoted by numerous scientists in numerous fields, especially if they are looking for funding. It is not usually accurate - nothing like accurate.

 

I won't get into a deep discussion about capitalism but by and large these arguments are I think bogus. An inefficient health care industry in the USA creates billions in taxes. It all goes round in circles.

Money is not an argument for governments because, as I said, the total money for a nation is zero. The only relevant argument for governments, as Plato pointed out, is that you only get elected if you cut taxes. So the incentive for governments is always to invest as little as possible in the common good.

 

I'm beginning to genuinely wish some undetectable undiscovered tropical parasite on these people.

 

But that is pretty much what the description says:

And it's unlikely anyone is going to be enthusiastic about the treatments on offer:

I think they're being rather naive to be so honest about their service. They're probably used to hanging out with their CBT buddies in an echo chamber and raving about how obvious and wonderful the BPS framework is They've been in place for over a year, so I'd be curious to see how the numbers look regarding their performance.

 

I can't believe I'm "liking" all this stuff! Time for a "hate" button methinks. Though appreciate the information of course, so I guess that's why I Like it. Makes me feel like tearing my hair out and screaming and weeping though!

 

You need to add Germany to that list.

Well, seems we might get a new Church - the Church of the Holy BPS Doctrine. Or maybe it is already established and now it broadens its influence. To flourish every seed needs to fall on good soil.

 

But if you asked employers and friends and family what ME/CFS was they would probably say 'not sure but I think it's what the call ME or Yuppie flu where people get really tired for ages - I don't think anybody really knows what it is but I guess for some people it is quite serious.' If you went o a 'medically unexplained symptoms' clinic and they were asked, what would they say? I suspect 'doesn't seem to make sense to me if they don;t even know what 's wrong - I heard someone whose mum is a GP say it's what they call people who have nothing wrong but think they are ill.'

I cannot see how MUS can survive as a medical term, when it will inevitably get talked about and given headlines in the Daily Mail sooner or later and everyone will know it means 'not really ill' because that is precisely what it is meant to mean. ME at least might mean there is something wrong. It is a bit like a bad forger setting up a bank and advertising to provide (badly) forged money at a very reasonable charge. Sooner or later people are going to start checking what the fivers look like.

 

To be honest not only are some people so uncritical, they will actively seek it out.

I found you guys in the other forum after I was absolutely sickened by some exchanges I read on an ME Facebook site.

Somebody started off going on about how therapy was helping them (fair enough), they couldn't understand what all the fuss was about. ME was obviously psychological in origin. Oh there may have been a silly old virus some where along the line, but the real issue was psych. If only other patients would listen .

The exchange then ventured into the childhood abuse/trauma stuff and various people then seemed to compete about just how traumatic their childhoods had been.

Some people actively seek out this kind of diagnosis and maybe for them it is correct.

It was impossible to counter these claims without seeming aggressive or to be picking on some traumatized individual so I left the site.

 

I still think the Daily Mail will latch on to PPS = nuts. Pain clinics were different because pain might be real but PPS are by definition not really there.

 

Notice how dualistic this is? Patients are accused of being mind-body dualists, but assuming medically unexplained disorders* should primarily be treated with psychological treatments and that medical investigations and treatments should be avoided shows you that it is the medical/psychiatric field that consistently reinforces the duality.

*if a disorder was found to be primarily due to mental factors then it is explained and not "medically unexplained".

This seems tautological. Unexplained means looking for explanations which means diagnostic investigations and referrals. To do otherwise will almost certainly cause harm when other issues are missed. Those with somewhat rare diseases including many less common autoimmune diseases frequently report how difficult it was to get a diagnosis. It is all to easy to say "medically unexplained" therefore we give up and will try CBT (which rarely has any objective or long term effect even on cognitions) as a last effort.

Notice how the outcomes are the usual PROMs that are fairly non-specific and have not been tested for patient relevance, acceptability and understandability in these specific groups of patients. Notice the total lack of objective outcomes beyond measuring health care utilisation and costs.

 

That's maybe the point. Saves a lot of money. One of the largest budgets is the one for health care. A better profit marge is wanted. In the EU, health care is part of services economy.

 

The same holds for Germany. It seems to be standard nowadays to not care about contracts. Because who will fight it? There is one humanitary scandal after the other, no government cares.

 

But we don't observe this with ME, and there are enough reasons to uprise; and wrt. doctors it would even be doable.

People tend to believe what they're told over and over again. If they are told "it's you, you just need to want", again and again - and that's happening - probability is high it will be believed. See how it goes with psychological doctrines, how people absorb it and reiterate it. See other topics where you can observe the same.

Catholic church fell because common people saw that even church folk died because of the plague, which could be used for an uprising. We would need something like that to overthrow psychological beliefs.

Looking at how things go politically (e.g. new laws) it seems that psychology will continue with their path.

 

When psychologists appeared on the stage (somewhere late 18th, 19th century maybe?), they talked about the "lunatics", "mentally ills". They realized some time later that this wasn't very liked - there were some rich "lunatics" - and they changed it to "psychologically ill". People understood that this meant he's a lunatic, lazy or a simulant. Over the time, it seems, people stopped knowing this. During this psychologists changed "psychological illness" to "psychological disorder" - because it sounds nicer; people accept it more easily. It is not so unrealistic to think they might make changes, again, in order to increase compliance. And today, nearly nobody believes that "psychological disorder" is another word for "simulant, lazy, crazy, weird, abnormal, non-conform".

That's why resistance gets up if you are called "psychologically ill". And doctors are educated to take patients seriously in order to introduce psycho stuff very carefully as to avoid resistance. The frog in the warm water...

But let's hope you'll be right!

 

You would think so right, but it's not true.
In the Netherlands we have SOLK clinics. It means somatic unexplained bodily complaints. I don't know how full these clinics are and what kind of people go there, but there's lots of interest.

I actually think these centers are not that bad (if you have other complaints and they would change the name). You get psychological help, group therapy, rehabilitation, ergonomic therapy, probably all very nice when it would be a secondary service next to actually being helped....