This is for people who perhaps think they have Lupus or Hughes Syndrome/APS, but have not had a diagnosis, (medically not yet explained symptoms), I had a couple of relatives like this in my wider family, who had very similar symptoms to my own, which were eventually diagnosed!
The James Lind Alliance Priority Setting Partnership (PSP) for Medically Not Yet Explained Symptoms (MNYES) is currently running a survey to establish research priorities according to patients, carers and clinicians dealing with MNYES.
The initial question-gathering survey for this PSP opened in June 2020 and you are most welcome to fill in the survey at york.qualtrics.com/jfe/form...
It should be filled in by people with no formal diagnosis to explain their symptoms.
It can be filled in by people who think they may have Hughes or SLE.
MaryF
NEED DOCTOR in Southern California
Does Hughes Always get worse?
Do I need ongoing consultant support?
APS AND EYESIGHT PROBLEMS 
MP using me and my illness as a case study in debate regarding the way ATOS are treating people who are claiming sickness benefits
