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

"Although fatigue as a symptom was considered for inclusion, chronic fatigue syndrome was considered out of scope since there was another PSP addressing this."

 

Link to the full paper : https://bmjopen.bmj.com/content/bmjopen/12/7/e061263.full.pdf

Link to full paper with supplementary material : https://bmjopen.bmj.com/content/bmjopen/12/7/e061263.full.pdf?with-ds=yes

I was hugely disappointed in this paper. I completely misunderstood what it was about and assumed that it was going to list 10 actual medical conditions [Edit : that were diagnosed late or rarely] that had had little research funding and then suggest that they get given more research time and money. But no. It's just wishy-washy psychological/mental health stuff, instead, which never fixes anything.

 

Oh wow this is awful. Almost none of those priorities have anything to do with medicine, medical care or research. Just full BPS. They are all phrased in the perfect way that makes them sound like they mean one thing, but clearly have the alternative BPS meaning. Fully generic, zero strategy or big picture. There will be zero research out of this list of priorities, they are entirely focused on what matters to healthcare systems that want to eliminate those costly complaints and have no other interest in it.

Sad. This will condemn patients to more years of failure. What a contrast to the ME one, shows the difference of a more knowledgeable community that managed to keep the focus on what matters. This is basically a wet dream for CBT therapists and BPS woo in general.

 

The funders and make up of the Steering Group meant this PSP was never going to help anyone except the Psychs

 

James Lind Alliance
Medically Not Yet Explained Symptoms

https://www.jla.nihr.ac.uk/priority-setting-partnerships/medically-not-yet-explained-symptoms/