Blog: Spoonseeker: Probing the Holes in MUS

https://spoonseeker.com/2018/07/29/probing-the-holes-in-mus/

 

"...do we have a situation where a massive new initiative is being rolled out to promote therapies with exaggerated efficacy for the purpose of combating an imaginary epidemic, at the same time encouraging doctors to overlook and under-investigate genuine pathologies?"

The sad, frightening irony is that while the health care system is pursuing 'an imaginary epidemic' in MUS, they continue to ignore and cover up medical errors that are the 3rd leading cause of death (in the US, won't be much different in Europe).

Medical error: that's the epidemic they should address.

 

https://twitter.com/user/status/1023829044138332160

 

NIH?

 

https://twitter.com/user/status/1023951905192464385

 

Indeed. Sadly learnt of third local teenager in my daughter's year ( over past 3 years timescale) diagnosed with a form of lymphoma - 2 out of 3 not picked up by GPs.

 

Yes, we do.

Rheumatological symptoms that did not have a reasonably clear explanation were less than 5% of my referrals. Symptoms that looked as if they arose from beliefs or fears were 0.5% or less.

It would be interesting and fairly easy, as someone says, to check this if old letters still exist. I could pull up 500 consecutive letters and see how many involved symptoms I could not explain. I could do it for colleagues too - which might be interesting! The hassle would be the ethical committee approval and all that stuff. It really needs an enthusiastic trainee wanting to write a paper to do the spadework. It would actually be best to get someone else to do the assessment. I might even be able to get someone interested, although I am not in touch with my department so much now and the old records may all be destroyed.

 

Thanks for the various comments on my blog and for this one in particular, Trish. You have identified an issue which slipped past me. Of course, if it works how it appears to work, patients could be identified as MUS if they had any one of those 27 symptoms on the questionnaire and they weren't 'explained' in the clinic notes within 3 months - even if it wasn't one of the symptoms they went to the clinic about. So maybe the clinic wouldn't even know about the symptom - so how could they explain it? Could it really be that ridiculous? Maybe not. But it could be....

So yes, I would really like to see some people with more academic clout than I have take a look at this. I think it would be well worth the time and effort (always assuming the necessary energy is available!) The whole MUS enterprise is resting on these dodgy statistics and it's entirely possible that they haven't been properly checked. It would be worth looking at the GP stats too...

 

from https://fndhope.org/

“FND is due to a problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly, rather than disease.”

So a problem with brain signalling is not a disease? Rules out myasthenia gravis then.

Reading about FND would make you weep. It mixes in reasonable things with BPS buzzwords and lots of conditional statements that leap out at the likes of us but can be easily missed.

This mixture of truths and half truths is hard to counter. They say that it used to be thought of as caused by emotional trauma but now they know that that is not true of everyone, CBT and psychotherapy will not help everyone (so "it doesn't work" can always be countered by "we did not claim it would work for everyone") They have learned a lot from the ME community and are getting their defence in first.

To say that physio helps is not controversial, the brain can learn to accommodate damaged parts and the idea that the brain can reset itself to a wrong normal setting is getting looked at by scientists in the eye and possibly other areas. It is plausible as constant adjustments are being made in our bodies all the time and they could easily go wrong. I think of it as a sort of autoimmunity in the brain; the immune cells get normal wrong and in the brain the homestatics are set wrong.

But where is the need for psychology? To think psychology is the answer with no proof at all just means that no one will look for what is actually going wrong. And if you refuse to believe you will never get better.

The websites are incredibly patronising, they set my teeth on edge. Everything is being done for the poor patients nothing about building empires.

 

It is all a bit circular as well. I went to my GP and asked if I had MS, then if I had Parkinson's. I described more and more symptoms, mentioning funny feelings I got and pains as I pored through medical texts all in the hope of finding the thing that would be the right clue to get a diagnosis. So she decided I had hypochondria and health anxiety.

What I actually had was a disease which was making me more and more disabled. I was struggling to bring up children while collapsing with pain and exhaustion, my walking and balance was gone, my temperature was all over the place - well I now know I have ME with all its horrendous symptoms but I had to ask a different doctor if that's what it was and he took the brave step of sending me to a neurologist who confirmed it.

But, of course, when no one is taking you seriously or offering any explanation of what is happening and you are getting fobbed off when you are correct that you have a disease it would make anyone anxious and distressed. The "refrigerator mother" of autism fame was the consequence of the disorder not the cause!

Friends with MS talk about knowing something was seriously wrong even before they were diagnosed little realising how lucky they were that their disease had got past the psychogenic description it once had.

 

MUS = Medically Undiagnosed Symptoms.

 

Patients are being dismissed with new symptoms because of having a diagnosis of ME previously. My acute diabetes was (at first) missed and I was given the telltale signs of MUS by the GP.

Seven months later I was told by another GP to get to hospital immediately, where I was finally put on insulin indefinitely.

I could have been dead eighteen months ago because of MUS.

 

I'm expecting the MUS cult to blame patients when death rates rise and life expectancy drops for the whole population. It will be all our own fault because we don't exercise enough, we eat too much fat and don't eat enough carbohydrate.