UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

Symptoms of brain and nerve disease have an overlap if you use only those symptoms it will not tell you anything.

A stroke, diabetes, MS can all cause numb feet but we do not say they are the same disease.

 

Fortunately the ME PSP had been given the go ahead before this one started, otherwise I am sure it would have been listed as an MNYES. That acronym always makes me think of enemies.

 

https://twitter.com/user/status/1441387147232116751

 

To me it belongs to this conversation:

"Did you go out into the garden yesterday evening?"
"MNYES (wait for it)"
"Did you lock the kitchen door when you came back in?"
"MNYES, erm, I think so, er maybe not."
"How many times have I told you...

And so on.

So it's:
"Do you know what's wrong with me doctor?"
"MNYES..."

 

Persistent Acronymia Correction Exercises?

 

A modern day condition that should be proposed for the DSM 6? Oh no, I forgot, it's only the psychiatrists who get to propose these new mental health problems...

 

That's like saying,

1) Which common treatment can we use to treat people who have sore, and disabling, feet, ankle and knee problems?
2) Which common treatment can we use to treat people who have recurring pain in the chest and/or back?
3) Which common treatment can we use to treat people who have severe, and disabling, headaches and/or eye problems?
4) You're only allowed to suggest one treatment to cover them all. Giving them all an aspirin would fit the bill. It won't help, but, after all, anyone who appears to be physically ill is really mentally ill and is trying to con the system to get pills or attention or benefits, and they are all lazy liars.

 

The problem with concepts such as "Medically Not Yet Explained" symptoms is that having been diagnosed with MUS or MNYES the patient will soon realise that no doctor will ever examine them again or suggest testing for anything (because testing tells patients they are really ill and they mustn't be allowed to think that because they might stop working and expect the state to pay them benefits).

I fear that most conditions that patients see doctors for in primary care is eventually going to be handed over to nurses and physios. No doctor required.

The assumptions about patients in this process ...

1) Sick people are all mentally ill.
2) Sick people are all scroungers who don't want to work and want to get all those juicy "secondary benefits", while in reality they struggle to find the money to keep a roof over their heads and keep food in the fridge.

The assumptions about doctors in this process ...

1) All doctors are excellent diagnosticians.
2) Doctors never get anything wrong.

Don't doctors realise that they are being de-skilled and removed from the process of healthcare, and their jobs being given to people who don't have their level of medical education and so cost less? Because one day doctors themselves may need medical treatment and I'm sure they would prefer to be treated by people who have high levels of qualifications.

 

clearly for medical staff, not patients.

I would think that if it had been patient orientated number 1 would have been trying to find out what is physically wrong with them, followed by possible meds to help with symptoms where appropriate.

The whole list reads to me as 'what should we do with these people'.

Is that what the purpose of this exercise is supposed to be?

 

One thing I realised a few years ago that is part of the whole "We won't believe you or test you or examine you" process is that doctors have told me many times over the years that they would do "full bloods", which (in my youth) always made me think that they would be thorough. (And I'm sure that was the intention.)

But when I finally bought a copy of my GP records I found that, in most cases "full bloods" meant that I got given a "Full Blood Count" which might tell them one or two things if they are there to be found but can't be remotely considered to be "thorough".

 

Nonetheless, making the distinction between "unexplained" versus "not yet explained" is very important. There is so much conflation and ambiguity touted around, to deliberately mislead - medically unexplained is so easy to then morph into meaning there is no physical illness, whereas it is much harder to pull that same con trick if clarified that an explanation is still pending.

 

I had assumed there was no difference, and they meant the same thing.

 

They do mean the same thing in reality, but the whole notion of MUS allows BPS'ites to imply (and they do) that MUS is synonymous with there being no underlying physical problem, ergo it must be the patient's unhelpful beliefs about their health that is the problem. Whereas the truth often being that MUS are merely indicative that no medical explanation of a physical problem has yet been found, and that it is therefore stupendously stupid to assume it is merely the patient's perceptions that are the problem.

But it suits the political narrative, because treating as MUS is a useful low cost cop out.

 

Let's not forget that ME was a distinct disease with the distinguishing symptoms of an abnormal response to exercise and a strange variability in presentation.

It has become MUS because the BPS people dropped all the distinguishing features and renamed it CFS where it became part of a spectrum of fatigue.

Basically they do not believe in ME so they do not diagnose it so they say our symptoms are unexplainable. If they will not test for ME it is inevitable that all tests will be negative.

 

Merged thread

Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership

Professor Christina Maria van der Feltz-Cornelis et al.

Abstract

Objectives
This study establishes research priorities for medically not yet explained symptoms (MNYES), also known as persistent physical symptoms or medically unexplained symptoms, from the perspective of patients, caregivers and clinicians, in a priority setting partnership (PSP) following the James Lind Alliance (JLA) approach. Research into such symptoms in general has been poorly funded over the years and so far has been primarily researcher-led with minimal input from patients, caregivers and clinicians; and sometimes has been controversial.

Design
JLA PSP method. The PSP termed these symptoms MNYES.

Methods
The study was conducted according to the JLA’s detailed methodology for conducting priority setting exercises. It involved five key stages: defining the appropriate term for the conditions under study by the PSP Steering Group; gathering questions on MNYES from patients, caregivers and clinicians in a publicly accessible survey; checking these research questions against existing evidence; interim prioritisation in a second survey; and a final multi-stakeholder consensus meeting to determine the top 10 unanswered research questions using the modified nominal group methodology.

Results
Over 700 responses from UK patients, caregivers and clinicians were identified in the two surveys and charities contributed from a broad range of medical specialties and primary care. The final top 10 unanswered research questions cover, among others: treatment strategies, personalisation of treatment, collaborative care pathways, training for clinicians and outcomes that matter to patients.

Interpretation
The top 10 unanswered research questions are expected to generate much needed, relevant and impactful research into MNYES.

Open access, https://bmjopen.bmj.com/content/12/7/e061263