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

Looks doomed from the start with a steering group stacked to the chimneys with psychiatrists and psychologists.

 

I've answered the survey. In reply to the question about what research I would like to see in response to Medically Not Yet Explained Symptoms:

• Why so many medical professionals seem unable to sit with uncertainty, resorting to psychosomatic explanations to explain away conditions that they can't otherwise diagnose.
• Quantifying the harm caused by labelling people as having psychosomatic disorders

You can put as much or as little as you want for an answer; there's just a few more demographic questions, mostly optional. I reckon it's good to give them some ideas of what we want to see.

Another one might be analysing the problems that plague MNYES (MUS) research.

You can register to later vote on the top ten priorities.

 

I filled it in. If you're a bit foggy it is probably worth having a good think before you start. I was expecting to have a bit more guidance about what sort of thing they were looking for but it's completely open ended. I didn't mention biomedical research. I can't remember exactly what I said, but it was along the lines of:

how can it be ensured that research on psychological treatments for physical symptoms uses only objective primary outcome measures that measure meaningful benefit to patients

how can medical education can be improved so doctors don't treat patients with unexplained symptoms as 'heartsink' patients and take symptoms seriously and don't fob them off with useless therapy

Research the medical care needs of patients so severely impacted that they are housebound and too sick to access the medical care they need.

Research how those care needs of severely affected patients can best be met.

Edit: I've just remembered I said something about researching how to ensure patients can get referral to a consultant physician to do a thorough diagnosis rather than being shunted off to psychological therapy.

 

What patient organisations are involved in this? It should of course be a wide range. But if this is the first we’ve heard of it looks like they are attempting to fly under the radar. How did they recruit the patients?

the survey needs sharing by ME organisations. People with ME need to understand they are in this category’


MUS is a Trojan horse for BPS mentality to maintain influence in the NHS. If ME remains bracketed as MUS it will be difficult to change anything even if the NiCE guidelines drop GET.
I would like to know if ME Association @Russell Fleming and @Action for M.E. have even been informed of this work by the James Lind Alliance.

 

This is making me fume they are just blatant. And it doesn’t give much faith in James Lind surely they should be insistent on the patient engagement side that’s supposedly what they are there for.

wondering if @dave30th would be interested in this latest snake from the MUS hydra head.

 

Perhaps someone could write a letter to them telling them to publicise the process properly through all the patient organisations that cover all the conditions they are including.
I suspect they will say there aren't any, as they are talking about unexplained symptoms not named syndromes.

 

http://www.jla.nihr.ac.uk/documents/medically-not-yet-explained-symptoms-psp-protocol/24954

Organisations can volunteer to be partners.

 

So somebody or some organisation is keeping a tight control on who is allowed to participate. I think it should be made public which organisations are regarded as having a conflict of interest and why.
Something else to write to them about.
@dave30th.